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Author Topic: Harvoni Side effects  (Read 1963446 times)

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Offline Keanu2015

  • Member
  • Posts: 89
  • “Life: 10% what happens and 90% how you respond"
Re: Harvoni Side effects
« Reply #1400 on: March 03, 2015, 03:39:08 pm »
Hello everyone,

    Hi Nadewitt, people here have been sharing a lot on this subject. It seems to me that what is most common is that folks are getting clinical labs at 2 weeks and Viral load labs at 4 and 8.

I personally am on day 12 and no labs have been scheduled for me period.
So I'm not the authority on this by any means.
2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

Offline MEG

  • Member
  • Posts: 304
Re: Harvoni Side effects
« Reply #1401 on: March 03, 2015, 03:45:17 pm »
Hi @nadewitt, ya, I agree with @Keanu. There seems to be variation about when and how often labs are done depending on the physician treating.

Some people do get 2 week viral load(I got it done at 4 weeks-on-treatment) but they're not necessary. 

And like Keanu said, some folk don't get labs done until EOT.  My doctor now  wants liver function tests and viral loads every 4 weeks until 12 weeks after EOT. But, it seems to be his preference rather than standard of care. 

How often does your doctor want future viral loads and liver function tests done?  Are you on the 8 weeks or 12 week regimen?

Most importantly, how are you feeling?
Geno 1a. IL28B+ with TT polymorphism.
Diagnosed 1993.
Liver Biopsy 1993 --inflammation.
Fibroscan 2014---no fibrosis.
ALT range---60s
AST range---80s.
Platelets: 200K range.
Viral load--2 million range.

Began Harvoni on January 23.
Finished 12 week course on April 19.

May 18---4 week EOT labs:
VL: UNDETECTED.
AST: 23
ALT: 22...........These have not been this low throughout treatment and since my 20s.

12 weeks EOT on July 15---Undetected.

Offline Keanu2015

  • Member
  • Posts: 89
  • “Life: 10% what happens and 90% how you respond"
Re: Harvoni Side effects
« Reply #1402 on: March 03, 2015, 04:09:10 pm »
Hi again everyone!

      Meg, wow! just noticed you're undetectable! awesome! congrats to you! I do like the fact that your doctor is ordering the tests at the intervals you explained here. I wish that was the case for me. I'd love to know what's happening at 4 weeks-- bare minimum. Do you feel better?
And yes thanks Meg.. Nadewitt ... how are you feeling? Did you notice a drop in liver levels Ast.. Alt?
2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

Offline nadewitt

  • Member
  • Posts: 32
Re: Harvoni Side effects
« Reply #1403 on: March 03, 2015, 06:18:02 pm »
I did notice a drop in my liver enzymes. They are not normal yet but lower than before I started treatment. I am on a 24 week program. Not sure how often labs are going to be. I was surprised when the doctor's office called and scheduled the 2 week labs. At the beginning I was told no labs and no doctor visit until 6 weeks in. Like I've said before, not a good relationship with the doctor. There is a lack of communication.

Keanu2015 can you get lab tests ordered by your primary physician? When I thought I wasn't getting labs I contacted my regular doctor and she sent me a lab form. I plan to use it next week since they didn't check my thyroid and that is one of the things that were messed up in previous treatments.

I have had a headache since the first pill. Sometimes it is worse than other times but it is always there. I have also experienced a lot of discomfort in my stomach, a lot of acid reflux and other digestive issues. This is easier than my other treatments but it is still no fun feeling bad and having to go to work and stare at a computer all day. By the time I get home I feel worn out.

Thanks for asking.

Offline BG42

  • Member
  • Posts: 14
Re: Harvoni Side effects
« Reply #1404 on: March 03, 2015, 06:52:00 pm »
Day 2 down and I'm hanging in there. I am drinking an exaggerated amount of water (meaning I'm purposefully drinking just a little more than I probably need to). So far it seems to be working although it is only my 2nd day. Yesterday was rough with the fog though. I'm a teacher so you can imagine the frustration when I have to be "on". Yesterday I was struggling to keep sentences straight during my teaching. Luckily, today wasn't the case and I am hopeful that the fog won't be a constant as it sort of isn't an option with my profession and all. Today I feel great though. I hope the rest is like today, but that is probably naive.

Offline kate0b1

  • Member
  • Posts: 293
Re: Harvoni Side effects
« Reply #1405 on: March 03, 2015, 06:55:23 pm »
@bg42, I'm sorry I'm chuckling about having a foggy teacher, i don't really mean it though, it is hard to go to work everyday and have all your wits about. I felt the fog kinda came and went but after a few days it was fine. It all about the water right lol

kate

Offline Keanu2015

  • Member
  • Posts: 89
  • “Life: 10% what happens and 90% how you respond"
Re: Harvoni Side effects
« Reply #1406 on: March 03, 2015, 08:08:52 pm »
Hi All!
BG42... the fog and dizziness, sleepiness left me after just a couple of days. The first week was really it for that stuff. I took a lot of advice from folks right here and it really helped me. I haven't had much if any of those things in my second week. I'm on day 12 today and I felt pretty good all day long  :) Hang in there! Here are 2 great tips that made me feel better instantly. Make yourself some Quaker oatmeal with raisins for breakfast. Also mix a cup of Dannon Activia vanilla light yogurt with a cup of chopped up ripe strawberries on another breakfast day. Tuna and Salmon are good foods for the liver. Onions and garlic are great also. If you like cereal try Kashi or Puffins products. They help with fiber, are low sugar and don't blast you with iron totals. I always thought Fiber one was great. Little did I know the iron boost was off the chain so I'll have a bowl of that once a week now if that even just because I dont want to waste it! lol (it still has great fiber)
Nadewitt... are you drinking lots of water? water kills any headache when I feel one coming on. Also you should load the "my fitness pal" app onto your smart phone (BG42 also!). Watch your fat, sugar, cholesterol, sodium, vitamin A, C, Calcium and iron levels (among others) right there. Consume foods and drinks that will cater to keeping the sugar, sodium, Iron and A lower on a daily basis. They give you bench marks for what your normal levels should look like by the end of the day. I have been making sure my C is high because it helps against viruses and helps absorption. My calcium level is higher too but near normal on scale, because it usually is collateral (I drink a few cups of milk) to maintaining vitamin D which is important for us. The way you eat will go a long way in helping you reach your goal with less complications. You probably know this stuff already being down this road but sometimes it's good to hear all over again. I'm glad your liver enzymes are down! that's great! Also thank you for the advice! I will contact my regular doc tomorrow!
2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

Offline Islandgirl

  • Member
  • Posts: 295
  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Harvoni Side effects
« Reply #1407 on: March 03, 2015, 08:15:41 pm »
Katie, I've found a way to do many things using the same mindset - just not to the extent you have.  Maybe when my energy comes back I'll attempt a bit more adventurous do-it-myself projects!  You go girl!  hugs,  ....Islandgirl
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline MEG

  • Member
  • Posts: 304
Re: Harvoni Side effects
« Reply #1408 on: March 03, 2015, 08:43:49 pm »
@Keanu Thanks. As one of my British friends says when she's excited, "I was pretty chuffed when I saw the NONDETECTABLE results."

I'd want to know what was going on too, frankly. Are you on the 12 or 24 week regimen? If insurance isn't an issue, I'd ask your doc and hear what his/her rationale is for no more labs until EOT. Can't hurt, right?  I'm so glad to read that you're feeling better. Those first 2 weeks I had the H side's but since then, nothing. Just healing/recovering from this sinusitis/cold. Finally got on antibiotics late last week and they're making all the difference in the world.



Geno 1a. IL28B+ with TT polymorphism.
Diagnosed 1993.
Liver Biopsy 1993 --inflammation.
Fibroscan 2014---no fibrosis.
ALT range---60s
AST range---80s.
Platelets: 200K range.
Viral load--2 million range.

Began Harvoni on January 23.
Finished 12 week course on April 19.

May 18---4 week EOT labs:
VL: UNDETECTED.
AST: 23
ALT: 22...........These have not been this low throughout treatment and since my 20s.

12 weeks EOT on July 15---Undetected.

Offline MEG

  • Member
  • Posts: 304
Re: Harvoni Side effects
« Reply #1409 on: March 03, 2015, 08:55:09 pm »
@Nadewitt, I'm glad to hear your liver functions were down. It's most likely a proxy for your viral load being down too. I'm now remembering that your treating physician is not good with communication. That is so frustrating.

So do you have an appt for the 6 week mark?  If you're on the 24 week regimen, I'd want to make sure the viral load trajectory is downward at that point because they can always add Ribavirin if it's not.

I agree with Keanu re: drinking lots fluids(if you don't have a heart or other condition for which you have restrict your water intake) for your dull headache. It helped me enormously. The water worked like an instant pain killer. I've kept it going, into what is not week 6, and I've not had a Harvoni headache since week 2...

My gastric sides(nausea) also disappeared after week 2....hopefully, your sides also diminish....I trust they will.
Geno 1a. IL28B+ with TT polymorphism.
Diagnosed 1993.
Liver Biopsy 1993 --inflammation.
Fibroscan 2014---no fibrosis.
ALT range---60s
AST range---80s.
Platelets: 200K range.
Viral load--2 million range.

Began Harvoni on January 23.
Finished 12 week course on April 19.

May 18---4 week EOT labs:
VL: UNDETECTED.
AST: 23
ALT: 22...........These have not been this low throughout treatment and since my 20s.

12 weeks EOT on July 15---Undetected.

Offline MEG

  • Member
  • Posts: 304
Re: Harvoni Side effects
« Reply #1410 on: March 03, 2015, 08:58:18 pm »
@BG I remember losing my words during an interaction with someone who I couldn't tell that I was being treated for HCV...Oy vay...

The water truly, truly helps. A nice surprise has been having these periods of utter clarity---that I've not known in many years. They pass and my mind reverts to the "ole hcv" brain again, but they're a hint of what the future can look like once I'm completely cured.  I can't wait...
Geno 1a. IL28B+ with TT polymorphism.
Diagnosed 1993.
Liver Biopsy 1993 --inflammation.
Fibroscan 2014---no fibrosis.
ALT range---60s
AST range---80s.
Platelets: 200K range.
Viral load--2 million range.

Began Harvoni on January 23.
Finished 12 week course on April 19.

May 18---4 week EOT labs:
VL: UNDETECTED.
AST: 23
ALT: 22...........These have not been this low throughout treatment and since my 20s.

12 weeks EOT on July 15---Undetected.

Offline Keanu2015

  • Member
  • Posts: 89
  • “Life: 10% what happens and 90% how you respond"
Re: Harvoni Side effects
« Reply #1411 on: March 03, 2015, 10:17:17 pm »
Meg,
    It's just lovely that you have to fight a virus AND a freakin bug at the same time! geesh I'm happy to hear you're destroying them both- ha!
I'm on a 12 week regimen. Thanks for the inspirational words... "periods of utter clarity" --love it! I haven't experienced those yet but so looking forward to it! I do feel I'm close... getting better every day. I still feel like I'm in the middle of a battle though. Thanks! I will definitely ask my doc some of those questions if he ever talks to me! Island girl... good luck keeping up with Katie! she's found her gojo! however I say anything is possible for us ALL now once we whip this thing!
2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

Offline Islandgirl

  • Member
  • Posts: 295
  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Harvoni Side effects
« Reply #1412 on: March 04, 2015, 07:46:41 am »
Keanu, don't know that I'd ever be able to catch up with Katie or Kate, but it makes me feel good to know that they are able to do it!  I'm battling what I think are sinus headaches rather than Harvoni sides.  I've never been a "go to the doc" person for most things, but I may have to break down and do it.  I've ordered some Serrapeptase that SunIsOut said he uses, so I'm hoping that will help. 

On a fantastic note :)  I have much less joint pain in my right ankle which I'd broken many years ago and have had severe pain and swelling as I age - at times requiring cortisone shots just to be able to walk.  Looks like a  normal ankle now and no shots since Harvoni treatment.  I can hardly believe it but I'm sooooooo grateful!  Gotta take my dogs to the groomer - have a wonderful day,  ...Islandgirl 8)
« Last Edit: March 04, 2015, 09:18:29 am by Islandgirl »
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline Keanu2015

  • Member
  • Posts: 89
  • “Life: 10% what happens and 90% how you respond"
Re: Harvoni Side effects
« Reply #1413 on: March 04, 2015, 06:05:22 pm »
Hi everyone!

     Island girl I totally agree.. Its fantastic to see those ladies working like they are. It definitely shows us that the arrow is pointing upward! I'm glad your joint pain is gone! that's an awesome story! Thank you. Did you call doc about sinuses?
Katie & Kate btw...since your names came up... Great job! lol
Meg and Nadewitt... I called my gastro again and pressed him this am and so... I picked up my script for 2 week labs today! ;) I'll get to see Alt, Ast, D, and platelets. VL will have to wait until 4 weeks. I'm going for blood work tomorrow on day 14.
Hope you're all well today!
2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

Offline nadewitt

  • Member
  • Posts: 32
Re: Harvoni Side effects
« Reply #1414 on: March 04, 2015, 07:14:15 pm »
I am so glad. Let us know your results!

Offline Islandgirl

  • Member
  • Posts: 295
  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Harvoni Side effects
« Reply #1415 on: March 04, 2015, 07:19:48 pm »
Keanu, I'm glad to hear you got your orders for lab work!  Good job 8)  Yes, I called my doc (thanks for your encouragement) and have an appointment for 8:15 in the morning. 

While it's a long shot, I did slip on wet leaves the 12th of January and my feet went straight out from under me and I wound up flat on my back and gave my head a pretty good blow.  When they heard that they made a spot for me to come in...  Could be they'll want me to have a CT scan or something?  Anyway, I'll report back when I hear something. 

This really only started in the past couple of weeks, so hopefully it's related to sinus or Harvoni and not the crack on the back of my head :-\  I did pick up some Sudafed today and that relieves the pressure somewhat.  I called my ortho doc this morning and cancelled my cortisone shot since my ankle is so improved - this is the second month I've cancelled since it was time I could have one!  It's not perfect, but man what an improvement!  We jointly decided not to make another appointment but to just call if I decide I need it.  Good luck on your bloodwork, I just know it will be UND!  ...Islandgirl 8)
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline Katie

  • Member
  • Posts: 784
Re: Harvoni Side effects
« Reply #1416 on: March 04, 2015, 07:38:41 pm »
Thanks for the compliments and encouragement everyone.  I had a list of TO DO's upon retirement and had saved money for those projects for the last 5 years I worked.  I had to make improvements to ensure I could stay in my loved home considering my mobility issues and they are all about done.  Then the real work comes on purging all the STUFF and keeping just what I need, and of course a thorough cleaning as there has been so much dust , so it is far from over.  Over the past 3 years I have remodeled my laundry room, had a garage built so I can access my house without steps, updated and tiled my bathroom (that was a first) and now the 2 back bedrooms.  My home will be lovely when finished, although the kitchen, dining room and living room needs paint.  It is going to wait for awhile as I am burnt out.  Other than building the garage I have done at least 75% of the work myself and really enjoy it.  It is difficult for me to have someone else do work that in the past I would have done by myself, but I have limitations now. DARN!

I don't want you to think it has been easy, as it hasn't but to be honest, when I am active and move forward it is beneficial both physically and mentally, in spite of the pain.  The orthopedic doctor is amazed at how well I am doing and what I accomplish.  I figured out how to modify how I do things to get a Bang for my Buck (ie: work done for pain endured)  HA!  I was told I needed a knee replacement and back surgery 10 years ago, and I have had neither.  I just want to encourage you all to stay as active as possible.  You don't have to tear out a ceiling or paint your siding, but use those muscles and keep moving. 

Being sedentary is the worse possible thing you can do to yourself.  That old saying, the more you do, the more you can do is so true.  Start with something very small and work up to a goal you have set.  It won't happen overnight and it shouldn't but you will feel the positive difference.

I will try and figure out how to post a picture.  I got one to post, but it was way too big so will re size so you can see my pride and joy...my home.  I've been working on it since 1992.  WOW!

I get my EOT on Friday, I hope.  So keep your fingers crossed for me.  Good Luck to all of you in this battle we are all fighting.  I am honored to be in your presence.  You are all so brave, compassionate and true warriors!

Here's a big Atta Girl for Kate too!

Katie
« Last Edit: March 04, 2015, 07:44:21 pm by Katie »
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline Katie

  • Member
  • Posts: 784
Re: Harvoni Side effects
« Reply #1417 on: March 04, 2015, 07:41:32 pm »
Island Girl....WOW, I didn't know you fell.  Sorry to hear that.  I hate that!  Glad your joints are doing better.  That is GREAT news.  Good luck on your appointment and hope everything is OK. 

It's a bad time of year for falls, so everyone be careful out there!

Katie
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline Katie

  • Member
  • Posts: 784
Re: Harvoni Side effects
« Reply #1418 on: March 04, 2015, 08:16:25 pm »
I will try and figure out how to post a picture.  I got one to post, but it was way too big so will re size.......

OK I tried to post a picture and it takes up an entire page even when I down sized it.  I was going to start a New Topic under Off Topic Forum but I couldn't figure it out.. Hey Sun Is Out...how did you post your beautiful picture of your boat?

Thanks,

Katie
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline Islandgirl

  • Member
  • Posts: 295
  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Harvoni Side effects
« Reply #1419 on: March 04, 2015, 08:18:26 pm »
Thanks Katie!  What a shock - one minute I was walking toward my car, looking forward with both anticipation and trepidation to my GI appt to discuss my lab results, and the next thing I knew I'd slipped on a wet leaf and was flat on my back!  I literally "saw stars" and thought I was going to back out, but didn't.  I was able to get up after a minute to determine that I didn't think I was really hurt, and went on to my appointment where I received my "undetected" on viral load and the best ALT/AST I've seen in years!

I thought later, that if I'd blacked out, I would probably have been laying on the sidewalk in the rain when the mailman found me!  Mom thought I was already gone and never even knew what happened until I got home :)  I had an appt with my chiropractor the next day so I told him about it and made sure everything was still in place.  He said it looked like I'd lucked out and was fortunate I hadn't wound up with a subdural hematoma - I'd never even thought about that!  Maybe I should have called my pcp, but I thought I was fine and I'm really hoping these headaches are not any big deal. 

Yep, we all need to be careful of falls!  I'd love to see a pic of  your home, Katie, and thanks for your good wishes 8)  ...Islandgirl
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline Katie

  • Member
  • Posts: 784
Re: Harvoni Side effects
« Reply #1420 on: March 04, 2015, 08:31:35 pm »
Glad you are following through with another check up because of the head aches.  Better safe than sorry! :-[

CONGRATULATIONS ON YOU EOT UD!  THOSE MAGIC, WONDERFUL WORDS. Keep me in your thoughts, as Friday is my D-Day.  All tests are sent out so it takes a week to get them back.  Have you heard from Nicole, at all.  I am worried about her and we are the Three EOT 2-25-15 Musketeers!  HA!

Katie

Tried to post a picture but couldn't figure out the "trick".   :o
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline JK9348

  • Newbie
  • Posts: 1
Re: Harvoni Side effects
« Reply #1421 on: March 04, 2015, 09:08:55 pm »
I am on week 5 of my Harvoni treatment. I am Genotype 1B with a low  83,000 viral load. My tests at week 4 were all positive. I am on a 12 week treatment.

I have no significant noted side effects at this time. Sine I am 71 years old there are side effects of being old that can mask any side effects related to the treatment.

http://www.militarytimes.com/story/military/pentagon/2015/01/07/hepatitis-c-sovaldi-cost/21334481/

My treatment is at a local VA hospital. I am served by a team of dedicated professionals entirely dealing with Hep C. My cost is 0, nothing. I have no co pays nor do I have to deal with an insurance company.
If you are an older veteran get tested. You may qualify for treatment. The only way to find out is to ask.
See link above.

Offline Katie

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Re: Harvoni Side effects
« Reply #1422 on: March 04, 2015, 09:17:09 pm »
Hi JK.. Thank you for your service and you deserve to have the treatment at no cost.  Your advice to your fellow veterans is GOOD and thank you for saying that.

When you say "positive" do you mean they were good or that you are still detected.  What we are all hoping for are negative tests for the viral load.  I am hoping you just meant your test was going in the right direction.

Good luck and keep us posted on how you are doing.  I am 68, so am right behind you!  :)

Katie
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline Islandgirl

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  • Posts: 295
  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Harvoni Side effects
« Reply #1423 on: March 04, 2015, 09:55:07 pm »
Thanks Katie 8)  I think the last post I saw from Nicole was 2/28 on one of the "post treatment" topics.  My doc tests a bit different than most on the forum - I have one coming up on March 25 and the last one will be September, but she says she doesn't really see anything changing.  Sure hope she's right!  Keeping my thoughts positive and fingers crossed for you!  For all of us!!

@JK ditto what Katie said, and welcome!  Katie is right behind us and I'm just ahead of you guys - a young 73 - also 1b, like you - just completed 12 wks Harvoni.   I'm really lucky that I have very few sides related to my age - other than some arthritis in an ankle that I broke when I was 21.  The Harvoni actually helped the swelling and inflammation in it!!  These recent headaches have really gotten to me as I'm not normally a "headache person" and they are different than the occasional headache while I was still taking the Harvoni.  I'll keep you posted after I see what the doc has to say.   BTW, Katie, my LT(15 yrs) boyfriend is also your age ha ha.  In our minds we are all young ;) 

OK, I'll stop joking around.  JK, I sincerely hope you have a successful and smooth treatment with the ultimate outcome of being able to say you are CURED!   God bless you and thank you again for your service.  hugs to all, ....Islandgirl 8)
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline kate0b1

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Re: Harvoni Side effects
« Reply #1424 on: March 05, 2015, 06:39:00 am »
good morning girls (and guys), island girl, you did not tell us that you fell  :-* i hope you are ok and a CT scan is never a bad idea. keep us posted, @katie pics please lol, i have no idea how to but id love to see lol. I am thinking i will be done the cabinets by next week witch is my EOT also (labs on friday). my kitchen apparently got MUCH bigger after i started this project lol. but it is super clean now and almost organized (i still have to repaint and do my pantry but I'm excited to do that while I'm waiting for the BIG labs on june 5th.

good day everyone

kate

Offline BG42

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Re: Harvoni Side effects
« Reply #1425 on: March 05, 2015, 09:30:41 am »
So now that I am on treatment, I'm reading even more about harmful things to the liver (besides the obvious alcohol etc.)

Looks like from things that I'm reading Niacin can be toxic to the liver and isn't recommended to have over 100 mg per day of Niacin.

Bummer because I like to drink "Spark" sometimes. It's an energy drink that gives me my caffeine fix when I'm not in the mood for coffee.

So I guess I'm not going to have more than one Spark in a day from now on.

What else is bad out there? I hear Vitamin A also?

Offline Islandgirl

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  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Harvoni Side effects
« Reply #1426 on: March 05, 2015, 10:38:04 am »
good morning girls (and guys), island girl, you did not tell us that you fell  :-* i hope you are ok and a CT scan is never a bad idea. keep us posted, @katie pics please lol, i have no idea how to but id love to see lol. I am thinking i will be done the cabinets by next week witch is my EOT also (labs on friday). my kitchen apparently got MUCH bigger after i started this project lol. but it is super clean now and almost organized (i still have to repaint and do my pantry but I'm excited to do that while I'm waiting for the BIG labs on june 5th.

good day everyone

kate

I had a CT scan after my doc appt this morning.  It may be only sinus pressure, but did the CT just to rule other things out.  Yep, I did the classic "banana peel slip", except it was wet leaves on the slightly sloped sidewalk.  I was on the ground, flat on my back before I had time to realize it was even happening!  Should get results on the scan tomorrow, hopefully since I'll have to wait until Monday otherwise.  Good luck on your labs!  ....Islandgirl 8)
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline TTSP

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Re: Harvoni Side effects
« Reply #1427 on: March 05, 2015, 11:42:12 am »
Now that I have gone a full week, I can say I have not experienced any side effects outside of what was expected. Since I have dealt with Meniere's disease for quite some time. The symptoms are so similar! Of course the worst discomfort of Meniere's is the dizziness and nausea. It also degenerates the ability to hear.

I have gotten the dizziness and nausea somewhat under control with vestibular therapy. I also have become well versed in things that cause tinnitus (ringing in ears) and have had to constantly drink water to flush sodium out of my system with Triamterene-HCTZ (diuretic) So actually having Meniere's has in a round about way been a blessing in prepping me for Harvoni!

1b naive/Harvoni 12 weeks/Clean and sober 25 years.

I'm not suggesting what I do is the answere for anyone else, what has worked for me is to avoid all stimulants. I can't even drink any amount of coffee let alone any sort of energy drink. It all causes tinnitus. Like Lucinda the RN/moderator here say in her article, even decaffeinated coffee has caffeine in it.

Best Wishes to everyone. 8)

Offline Keanu2015

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  • “Life: 10% what happens and 90% how you respond"
Re: Harvoni Side effects
« Reply #1428 on: March 05, 2015, 01:04:20 pm »
Hi Everyone!

     Just got back alive from my drive in the blowing snow. 2 week labs are done- I'm looking forward to my results in a couple of days! Hope the Liver enzymes are down big time! Nadewitt -Thanks for your well wishes!

   Agreed TTSP decaff does have caffeine in it, however because it has little to no effect on me I can drink more  ;) Outside of that I drink absolutely nothing with caffeine or carbonation in it.

Island girl so sorry you fell.. oh my goodness! that doesn't sound good the way you hit! Perhaps you had a mild concussion, (headaches?) Good call on the scan! Hope you check out ok.

Hi BG42 Try to keep your iron, vitamin A, sodium, sugar and processed foods (fats etc.) in range or low according to you daily intake (MG or %) totals. Vitamin C from natural sources is good. Vitamin D and Omega 3 are good too. You get those from fish such as salmon and tuna along with some grains. low fat yogurt (with probiotics) is good to help digest food better. That takes strain off your liver. I'm brainstorming from my own diet right now. Just throwing you a few tips I'm using which I learned here and various other credible sources.

Katie and Kate Hang in there! sounds very promising on the projects!...waiting for pics!

JK Thanks for serving brother...I can say they do take care of us vets! Good luck!

2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

Offline Islandgirl

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  • Posts: 295
  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Harvoni Side effects
« Reply #1429 on: March 05, 2015, 04:44:33 pm »
Thanks Keanu, Kate, Katie and everyone. :) 

My doc did a lot of checking my reaction to light, sound, reflexes, walking a straight line - you name it - and couldn't find a clue to my pressure and headaches and ordered the CT Scan STAT.  I got a call about 2:00 telling me the results are negative!  So we're treating it like sinus and will see how it goes.  I was able to take a long nap as I had little sleep last night and am taking OTC pain/sinus meds plus a presc steroid spray (don't plan to use the spray much if I can help it), along with good ole salt water.  He does think I had a concussion but thank goodness no sign of subdural hematoma.

Looking forward to hearing your 2 wk lab report, Keanu, I know it's gonna be great!

Yes, they do take care of our vets!  And as a mom who's son died from Hep C that went into liver cancer, our family is eternally grateful for the help and support he/we received from the VA even though he didn't make it though. 

And thank God for the advances we have in HCV treatment today! 

Blessings to all 8)  ...Islandgirl
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline SunIsOut

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  • Posts: 60
  • I wasn't born a wiseman but I'm learning the trade
Re: Harvoni Side effects
« Reply #1430 on: March 05, 2015, 06:01:52 pm »
Hi, I saw the note asking how I post pictures and the instructions are below.  I hope this helps if not let me know and I will try to explain it a little better.



To post a picture like the one above. You need to click on the Photo icon that is supplied when you do a reply on the forum and that will open a bracket so that you can paste the URL.  You must have the photo on the internet in a site like www.flickr.com in order for you to copy the image URL.

Code: [Select]
[img]put your url address here like flicker.jpg[/img]


I am lucky to not get sinus infections anymore but do use a Netti pot at the first sign of a cold or allergy and find that little device to be heaven sent.  Not sure if others use this as well.
« Last Edit: March 05, 2015, 10:25:48 pm by SunIsOut »

Offline Katie

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  • Posts: 784
Re: Harvoni Side effects
« Reply #1431 on: March 05, 2015, 06:10:27 pm »
Hi, I saw the note asking how I post pictures and the instructions are below.  I hope this helps if not let me know and I will try to explain it a little better.



To post a picture like the one above. You need to click on the Photo icon that is supplied when you do a reply on the forum and that will open a bracket so that you can paste the URL.  You must have the photo on the internet in a site like www.flickr.com in order for you to copy the image URL.

Code: [Select]
[img]put your url address here like flicker.jpg[/img]


Thanks Sun Is Out. That's my problem. My photos are just on my computer and don't have them in that format.  Guess I can't share my photos.  :(

Katie

I've been using a Netti pot for years and even use it after I do my woodworking due to the dust...in addition to a dust mask.  It really is a help!
« Last Edit: March 05, 2015, 06:14:54 pm by Katie »
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline SunIsOut

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  • Posts: 60
  • I wasn't born a wiseman but I'm learning the trade
Re: Harvoni Side effects
« Reply #1432 on: March 05, 2015, 06:53:17 pm »


Thanks Sun Is Out. That's my problem. My photos are just on my computer and don't have them in that format.  Guess I can't share my photos.  :(

Katie

I've been using a Netti pot for years and even use it after I do my woodworking due to the dust...in addition to a dust mask.  It really is a help!

Hi Katie,

Flickr is free and you can open an account and make your pictures private so no one can see them in Flickr but you can share them with friends like on the forum using the technique I just described.  I will admit that it takes a little effort to learn this but I am far from doubting your DIY skills.  I too am working on my home and did all my crown molding, recessed lights, and have taken my kitchen cabinet door off to replace hinges and repaint.

I have new appliances coming next week and the refrigerator has a water line coming from underneath where they drilled a hole in the hardwood floor instead of through the wall and did not put a shut off valve in place so I have to rip that out and do it right which back to your point is you cannot trust the contractors and this was in place before I bought the home some 10 years ago.

Here is a picture of what my backyard will look like later in spring;



But......................Here is what it looks like now and it is snowing like crazy outside today;


Offline SunIsOut

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  • Posts: 60
  • I wasn't born a wiseman but I'm learning the trade
Re: Harvoni Side effects
« Reply #1433 on: March 05, 2015, 07:00:47 pm »
Okay, Back to our regular scheduled programming.

I have been on Harvoni for one week now.  I have been taking some time off from work to adjust to this medication.  I do computer work pretty much all day but I fatigue out.  I did have some of this brain fog last week and had a really hard time conducting a meeting and felt like I just got out of high school and was not constructing thoughts and sentences as I normally do.  I have used this time to work about 4 hours a day on the house remedial labor inside and doing light project planning work.

I do not have headaches or nausea and I really think you could not ask for a easier treatment than this.  I have all my vacation and sick time available as I rarely take time off.  Once again only fatigue and not feeling like I have optimum control of my thinking faculties but life is good none the less. :)

Offline MEG

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  • Posts: 304
Re: Harvoni Side effects
« Reply #1434 on: March 05, 2015, 08:00:11 pm »
Hi Everyone! My goodness. Gone for a day and Keaunu is getting labs done(!), Island girl, thank God, has a good CT scan---my head hurt when I read your description of how it happened.!   I hope you get relief from the sinuses pain. For me it lingered for so long this winter that it turned bacterial, but I feel so much better as I finish my antibiotic script. I'm so glad to hear how your ankle improved while on the H...that's amazing. I suppose the chronic inflammation we had while hcv positive may have made inflammation in other places in our bodies worse? It does make sense. What a pleasant surprise for you.

Katie Fingers crossed for you tomorrow...how long will it take to get the result?

JK Yes, thank you for your service and you deserve every H pill available to cure you.!  It sounds like your treatment is going smoothly....may it continue.

TTSP  Nice to meet you. It sounds like you're managing great too. What is vestibular therapy?

Peaceful evening everyone!




Geno 1a. IL28B+ with TT polymorphism.
Diagnosed 1993.
Liver Biopsy 1993 --inflammation.
Fibroscan 2014---no fibrosis.
ALT range---60s
AST range---80s.
Platelets: 200K range.
Viral load--2 million range.

Began Harvoni on January 23.
Finished 12 week course on April 19.

May 18---4 week EOT labs:
VL: UNDETECTED.
AST: 23
ALT: 22...........These have not been this low throughout treatment and since my 20s.

12 weeks EOT on July 15---Undetected.

Offline Keanu2015

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  • Posts: 89
  • “Life: 10% what happens and 90% how you respond"
Re: Harvoni Side effects
« Reply #1435 on: March 05, 2015, 08:42:52 pm »
Hi Meg! lol yes I finally got my doc to listen to me. He wouldn't allow VL for some reason?... That's happening at 4 weeks, so 2 more. Maybe he doesn't want to risk me seeing little movement? Not sure why. He did allow me to see Alt, Ast so that's in there. That's fine with me as mine were off the hook before I started this medicine! I think there's only one way for those to go. I requested vitamin D and platelet levels as well. I did that because I saw where some folks on here had found issues in those areas and I want to know! I'm happy to hear you're feeling better... finally! :)

Katie sorry you can't show your pics. Maybe you can move a few of them to FB? (If you're a member that is?) and load from there? I'm not sure how this works either though I haven't tried.
Island girl- glad things are ok with you! scary stuff!
Also thanks for the encouragement! I'm praying to see some downward movement.
Sunisout I hope you start getting a bit more clarity sooner than later! Sounds like your professional life really depends on it! I'm sure it will come soon. I'm starting to feel those moments here at 2 weeks. Hope everyone is doing well tonight!
2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

Offline Islandgirl

  • Member
  • Posts: 295
  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Harvoni Side effects
« Reply #1436 on: March 05, 2015, 09:54:13 pm »
Thanks!  The experience was a wake up call in more ways than one.  My 91 year old mom has lived with me for the past 6 years and if something happened to me....  I have longer term plans made but need a better interim pain. 

I do use the squeeze bottle version of the netti pot and it works extremely well.  I think I hurt so badly that I really didn't think about getting some relief that way. 

Great pics, SunIsOut!  I need to replace my kitchen appliances and cabinets, but first may be involved in a house rehab my BF and I are looking at as a rental property potential.

I'm off for bed to see if I can catch up on lost sleep!  Sleep well everyone - I slept so well while on Harvoni that I miss that bene :)   ...Islandgirl
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline Katie

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  • Posts: 784
Re: Harvoni Side effects
« Reply #1437 on: March 05, 2015, 09:56:39 pm »
Just trying this out.  Thanks Sun Is Out...Beautiful groomed yard.  Mine is  a bit more natural.  :)

I joined Flickr as Sun Is Out suggested  and will try to post a picture of my deck flowers.  Can't wait to have their beauty again this year.  Hopefully it will work!



I get my EOT results tomorrow.  So will let you know how that goes!

Here is a picture of a stream walk I took and you'll notice two young brown bears on the shore.  This was back in 1992.  I miss my field research.




Katie  (fingers crossed I figured out the photos)  Doesn't look like it's working.  hmmmmmmm
« Last Edit: March 05, 2015, 10:04:17 pm by Katie »
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline MEG

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  • Posts: 304
Re: Harvoni Side effects
« Reply #1438 on: March 05, 2015, 10:20:20 pm »
Haha, Keanu....I don't think you need 2 week viral loads. No matter what they are(neg or some hcv critters still around) the treatment protocol won't change...your ast and alt will give you a hint. If they're down at all, then you know that your kicking hcv outta the house ;-)

Katie, shux. I can't see your pix...hmm. Looking forward to learning that you're UNdetectable!

Sunisout I'm so sorry that I forgot to mention how beautiful your yard is.  Ahh, the snow. I lived in the DC area a few years ago and we had a pretty snowy winter. This one is breaking all records, I think.  Your H brain fog may begin to fade out. It seems that the first couple of weeks are hardest for people re: brain fog. It is really weird isn't it when all of a sudden you can't manage a conversation.  During my first week of H, I had to make flight plans which involved landing in one city and departing from another. I could not do it. My brain became overwhelmed and couldn't figure out what was a pretty simple task. I've not had those kinds of episodes since week, 2....




Geno 1a. IL28B+ with TT polymorphism.
Diagnosed 1993.
Liver Biopsy 1993 --inflammation.
Fibroscan 2014---no fibrosis.
ALT range---60s
AST range---80s.
Platelets: 200K range.
Viral load--2 million range.

Began Harvoni on January 23.
Finished 12 week course on April 19.

May 18---4 week EOT labs:
VL: UNDETECTED.
AST: 23
ALT: 22...........These have not been this low throughout treatment and since my 20s.

12 weeks EOT on July 15---Undetected.

Offline SunIsOut

  • Member
  • Posts: 60
  • I wasn't born a wiseman but I'm learning the trade
Re: Harvoni Side effects
« Reply #1439 on: March 05, 2015, 10:31:42 pm »
Just trying this out.  Thanks Sun Is Out...Beautiful groomed yard.  Mine is  a bit more natural.  :)

I joined Flickr as Sun Is Out suggested  and will try to post a picture of my deck flowers.  Can't wait to have their beauty again this year.  Hopefully it will work!



I get my EOT results tomorrow.  So will let you know how that goes!

Here is a picture of a stream walk I took and you'll notice two young brown bears on the shore.  This was back in 1992.  I miss my field research.




Katie  (fingers crossed I figured out the photos)  Doesn't look like it's working.  hmmmmmmm

Hi Katie,
I well document it in a reply tomorrow then delete it after you get it.  You have to make sure that the pic url has a .jpg for it to be recognize as an image.  When you click on your photo after you upload there is a download icon. If you press that download icon you will see options for large, medium small picture.  Right click on the size you want and choose the options that says copy image location.  Each browser (firefox, Internet Explorer, Google) all have a different phrase  but you will figure which one.  If you do not get it I will do screen shots that map it out.  Everyone has to learn sometime.  :)

Offline Katie

  • Member
  • Posts: 784
Re: Harvoni Side effects
« Reply #1440 on: March 05, 2015, 10:37:51 pm »
The brain fog Keanu and Meg are describing is exactly what I felt before treatment for a few years.  It was horrible with my responsibilities at work.  My verbal skills diminished at least 50% and sometimes as bad as 75% and is one reason I retired before I was planning on it, as I did like my work training technicians and analyzing the data.  I also had severe insomnia and fatigue and looked ragged all the time.  Fortunately my writing skills remained in pretty good shape so I was able to do what needed to be done, but feeling terrible the entire time.  Was so frustrating as I was always a competent public speaker.

With Harvoni all of that disappeared after the 2nd pill.  It took a little time to improve substantially but immediately I felt better than in years and years!  Week 9 and 10 the fatigue came back and then one morning I woke up and felt good again.

It is interesting how things differ from person to person.  I am confident that I will be OK, but waiting for this test and then for another 12 weeks will be difficult.

As for the pictures, evidently I have to change the format and didn't want to spend more time figuring that out.  I will try again down the road but that's it for tonight.

Glad you're OK Island Girl.  Glad your doctor is giving you some results Keanu.  It's important for your mental wellness if for nothing else.  Meg, I love hearing from you and hope you are feeling better too.  Hopefully the brain fog will lift for both of you soon.  It is horrible.  I know I worried about Alzheimer's those years I fought it, but right now I am doing terrific in that regard.  The only thing bothering me is my endurance.  I wear out easily, but then, I've been working hard with dust and fumes so that may have something to do with it.

I'll let you know how it goes tomorrow!

Katie
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline Katie

  • Member
  • Posts: 784
Re: Harvoni Side effects
« Reply #1441 on: March 05, 2015, 10:40:44 pm »
Hi Katie,
I well document it in a reply tomorrow then delete it after you get it.  You have to make sure that the pic url has a .jpg for it to be recognize as an image.  When you click on your photo after you upload there is a download icon. If you press that download icon you will see options for large, medium small picture.  Right click on the size you want and choose the options that says copy image location.  Each browser (firefox, Internet Explorer, Google) all have a different phrase  but you will figure which one.  If you do not get it I will do screen shots that map it out.  Everyone has to learn sometime.  :)

Thanks Sunisout!  I really appreciate it.  I was in a hurry so I will try again tomorrow.  I can easily miss a small step as I get impatient with different apps I am not familiar with.  I really do appreciate it.  Thank you!!!!
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline Mugwump

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  • Posts: 777
  • My number of posts means nothing, piscor ergo sum!
Re: Harvoni Side effects
« Reply #1442 on: March 05, 2015, 11:03:17 pm »
Here is what happens when you reach for an or and the battery slips sideways in a small boat. I needed a bath anyway!


On Monday I will be getting my 12 week test results just the liver panel and depending on that result the doc will decide if he wants to do a VL test.

It is going to be a nail biter until I know for sure that I am sustained UD but I am sure I can wait another 8 plus months before I know for certain.

Till then I will go fishing! For fish like Walter. I released him on this very same lake last year and he is most likely now over 15 lbs. I hope he doesn't get too mad at me for taking him out of the water again!

« Last Edit: March 05, 2015, 11:23:23 pm by Mugwump »
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline TTSP

  • Member
  • Posts: 38
Re: Harvoni Side effects
« Reply #1443 on: March 06, 2015, 11:32:40 am »
MEG
Vestibular Therapy is a group of balance exercises. As I stated in the original post, I'm not sure they would be helpful to anyone without Meniere's. If dizziness becomes an ongoing problem, then maybe it could. I just felt because I am doing them and have been for quite some time, they could be helpful to me dealing with additional dizziness caused by Harvoni.
I've only been taking Harvoni for a week. I have moments of the fog, and a few aches.This is not unusual for me. I've had these for a few years. Who knows?

As for my previous comment about any form of stimulants. I know first hand how difficult change is. I would not suggest anyone or myself go "cold turkey" on anything. Because of my situation I had to. After some time I got used to not having coffee or energy drinks, and was able to work 12 hour days including a 1 hour commute to and from work. It was not easy, and I'm happy those days are behind me. ;D
Best wishes to all for a speedy recovery!  8)

Offline Keanu2015

  • Member
  • Posts: 89
  • “Life: 10% what happens and 90% how you respond"
Re: Harvoni Side effects
« Reply #1444 on: March 06, 2015, 11:57:05 am »
Good morning friends!

        Meg, I know, I know LOL! I guess they don't like doing the VL a lot because it's more expensive and not really important at that interval. My rationale was that "hey if I"m here why not add in one more test?" ;)

**Anyway, amazingly enough I got my ALT, AST results back today! ALT 37 (Reference range= 0 - 50) amazing! AST 28  still had the flag though because: (Reference range 8 - 27) But oh my lord! 1 point high! I'm astonished!  :) Those stats were crazy high for years before beginning Harvoni tx. I also feel almost no pain in my side anymore here at 15 days either... It truly is a miracle!

Katie thank you, I agree, watching levels progress really does a lot for the psyche! I'm glad I pushed for the tests! Thank you for the guidance everyone! Hope you are all well today!
2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

Offline Keanu2015

  • Member
  • Posts: 89
  • “Life: 10% what happens and 90% how you respond"
Re: Harvoni Side effects
« Reply #1445 on: March 06, 2015, 12:14:24 pm »
Hi Nadewitt,

     I wanted to thank you also personally for encouragement and helping me figure out these testing intervals and such. How are you?... Hope you're doing well today!
2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

Offline nadewitt

  • Member
  • Posts: 32
Re: Harvoni Side effects
« Reply #1446 on: March 06, 2015, 02:58:11 pm »
Hi everyone! I am doing a lot better with the headaches. I go in for some blood tests on Monday for my regular doctor. After I get the results I will post them. From the last tests it showed my platelet level was only 98 where regular is 150-450. The nurse said this was expected with Harvoni. Thank you to everyone for your support and help. I am amazed at what you have been accomplishing! I am no where near as DIY as it seems everyone else is. I loved the pictures of the spring and winter. I've got to get back to work now so I hope everyone has a great weekend!

Offline MEG

  • Member
  • Posts: 304
Re: Harvoni Side effects
« Reply #1447 on: March 06, 2015, 03:34:17 pm »
@TTSP Thanks for explaining the relationship between the vestibular exercises and that it's for those who already have problems. I think you're right about doing them while you're adjusting to the H...Ya, when I got diagnosed 20+years ago, I had to slowly wean off on the caffeine. I do drink one mug of Decaf a day because I miss the taste.  Although it has a little caffeine in it, I don't feel it...

Wishing you continued healing.

@Keanu....LOVE those LFT results.  Your viral load is assuredly significantly down....how wonderful!

@Nadewitt, I'm delighted to hear that you're feeling better. Yes, keep us posted on the results!




Geno 1a. IL28B+ with TT polymorphism.
Diagnosed 1993.
Liver Biopsy 1993 --inflammation.
Fibroscan 2014---no fibrosis.
ALT range---60s
AST range---80s.
Platelets: 200K range.
Viral load--2 million range.

Began Harvoni on January 23.
Finished 12 week course on April 19.

May 18---4 week EOT labs:
VL: UNDETECTED.
AST: 23
ALT: 22...........These have not been this low throughout treatment and since my 20s.

12 weeks EOT on July 15---Undetected.

Offline Katie

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  • Posts: 784
Re: Harvoni Side effects
« Reply #1448 on: March 06, 2015, 05:01:57 pm »
I am still missing something for sharing photos as it didn't work so I will try again later.  I think I am just not seeing all of the options I need to fromat the photo correctly or I am doing it out of proper sequence!

I picked up a copy of my EOT test results and spoke to the nurse and am STILL Detected less than 12 IU/mL.  Disappointing to say the least, but my battle is far from over.  I have a doctor appointment next Thursday.  I just stopped by the office for the results today as I didn't want to wait another week.  All of my other blood work is perfect, which is good news.

During week 9 & 10, when horrible fatigue hit me and depression (which I've NEVER had before) I felt something wasn't going right as I felt so good for the first 8 weeks.  Weeks 11 & 12 I felt back to being my happy self and accomplished a lot on my remodel.  Who knows.  The nurse said she would call and speak to Gilliead to figure out what the next step is and would have the information on Thursday.  I did pose some questions for her to ask.

I am having some discomfort in the liver area, and I wear down fast.  Another thing I noticed is my eyes look tired and like they do when I am sick so stuif is still going on even though I feel so much better.  I really hate this alien monster parasite!

She reminded me that this is such a new drug that everyone is learning and this is NOT considered a treatment failure at this point.

So there it is!  I am going to finish the last of my trim today and do some cleanup as the carpenter will be back on Monday.  I must keep busy and progress is good.  This is just a small step backwards but it will all work out!

You aren't rid of me yet!   ;)

Katie
« Last Edit: March 06, 2015, 05:20:57 pm by Katie »
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline SunIsOut

  • Member
  • Posts: 60
  • I wasn't born a wiseman but I'm learning the trade
Re: Harvoni Side effects
« Reply #1449 on: March 06, 2015, 05:19:22 pm »
I am trying again...My stream walk with brown bears.  We'd walk this creek every other day and count the salmon spawning and sample the spawned out carcasses, looking for missing adipose fins and recover the head along with taking scale samples to age them and length measurements.  Our walks were always shared with both brown and black bears and most of the time they were just interested in the fish.  Young grizzlies like to "fake charge" you which was always a bit concerning as we would be very close and you have to stand your ground.  They would love a chase!




Katie, The url has to have a .jpg at the end.  I looked at your link and it is not there. Your link ends in "Photostream" without the .jpg . When you click on your picture in Flickr it will expand.  In the lower right corner is a download icon. Press that Icon and it will give you choices for Large, Med, Small, .....  Right click on medium and chose the phrase that most resembles "copy location/image address".  Then paste that between the
Code: [Select]
[img][/img] like you did before.  You are almost there!

Here is a screenshot but it blocks the download Icon but that is the absolute bottom right icon when you click to expand your picture.



Ha!  You got it.  Okay I will delete this post tomorrow so I do not junk up the forum but in case someone else wants to learn  Beautiful picture!
« Last Edit: March 06, 2015, 05:29:50 pm by SunIsOut »

Offline Katie

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  • Posts: 784
Re: Harvoni Side effects
« Reply #1450 on: March 06, 2015, 05:23:59 pm »
Thanks for your patience Sun!  Here I go:
My stream walk with brown bears.  We'd walk this creek every other day and count the salmon spawning and sample the spawned out carcasses, looking for missing adipose fins and recover the head along with taking scale samples to age them and length measurements.  Our walks were always shared with both brown and black bears and most of the time they were just interested in the fish.  Young grizzlies like to "fake charge" you which was always a bit concerning as we would be very close and you have to stand your ground.  They would love a chase!
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline Katie

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  • Posts: 784
Re: Harvoni Side effects
« Reply #1451 on: March 06, 2015, 05:31:16 pm »
My house and porch flowers from last year:



My bathroom:  I built the vanity Tiled the tub/shower and put in a tiled window sill.



My laundry room:  I put in a stackable unit, painted with chair rail and built a folding table which has turned into my sick plant ICU.  I really need to stop that!   :D


That's enough of that!  I don't want to show you what a mess my house is in with this project and will wait until it is in better shape!

Katie
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline MEG

  • Member
  • Posts: 304
Re: Harvoni Side effects
« Reply #1452 on: March 06, 2015, 05:41:50 pm »
Oh, Katie. I'm so sad with you about still having a few hvc's hanging on. I've heard of people(Lucinda, I think) say that they've tested slightly detectable and then went undetectable on the next blood draw..

Meanwhile, keep busy, hang out with us and stay in faith that something will come through 

Here's a HUGE HUG. Meg.
Geno 1a. IL28B+ with TT polymorphism.
Diagnosed 1993.
Liver Biopsy 1993 --inflammation.
Fibroscan 2014---no fibrosis.
ALT range---60s
AST range---80s.
Platelets: 200K range.
Viral load--2 million range.

Began Harvoni on January 23.
Finished 12 week course on April 19.

May 18---4 week EOT labs:
VL: UNDETECTED.
AST: 23
ALT: 22...........These have not been this low throughout treatment and since my 20s.

12 weeks EOT on July 15---Undetected.

Offline Karen1124

  • Member
  • Posts: 76
Re: Harvoni Side effects
« Reply #1453 on: March 06, 2015, 05:42:32 pm »
Hi Katie,
You have a beautiful home and you do excellent work!! Life is Good!! Karen
Your a brave lady those bears would scare me!! Lol
Geno 1a
VL 2 million
DX May 1 2014
Bio June 5 2014
moderate fibrosis
Start Harvoni 2/5/2015
EOT 4/1/2015
 7/22/2014 alt 186 12/30  64  3/5/15  39
7/22/14  ast 114    12/30.  41  3/5/15  27
Don't know how I got hep C in my 20s I did snort coke a few times.
3/5/15 undetected
4/2/15 less than 15 VL ferrin levels normal
4/9/15 undetected!!
6/24/15 relapse VL 424,000
7/26/16 Started treatment today Harvoni and Ribavirin 24 weeks

Offline Keanu2015

  • Member
  • Posts: 89
  • “Life: 10% what happens and 90% how you respond"
Re: Harvoni Side effects
« Reply #1454 on: March 06, 2015, 06:04:05 pm »
Hi Everyone!

Oh Katie ...My prayers are with you. You're a strong, positive person I know that either way you are going to pull through this. I have read already that several folks had a small amount detected at EOT but ended up cured at the end. Not sure how that happens or works but that means there is still hope! Beautiful pics and home! ...will be thinking of you.

Thanks Meg! I've been feeling very positive all day today. Hope you are well.

Nadewitt, Im happy you're feeling better.. great news! I'm praying we can all pull through this thing cured!
2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

Offline Islandgirl

  • Member
  • Posts: 295
  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: Harvoni Side effects
« Reply #1455 on: March 06, 2015, 06:49:02 pm »
What Keanu and Meg said plus me!  I'm thinking positive for you; for all of us, and the battle is not over.  We will win!  Please keep on posting what you find out and feel a big hug from me.

I love your home and flowers.  Like you, my yard is more natural, and in places whimsical.  The live oak trees here would never allow a truly manicured look - think free leaf mulch :)  In my Florida room I have orchids in two areas and just outside papaya trees, bird-of-paradise, a Meyers lemon, Limequat (tastes like key lime only better) bananas and a tangerine tree.  I love growing flowers that feed butterflies and hummingbirds and always grow extra parsley, dill and fennel as caterpillar food.  Yes, I too have a "sick plant" area and one orchid on the back fence (in all weather) was from a nursery sick table - it thrives and has been on the fence 3 years now :)

I'm happy to hear that most of us are doing/feeling better and I see us all as moving toward "Cured" - no room for negative I keep telling myself.  I do confess to being a bit apprehensive as I move toward my own next test on the 25th and doc appt on the 2nd of April.  We Will be cured!  Hugs to all, ...Islandgirl
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline Karen1124

  • Member
  • Posts: 76
Re: Harvoni Side effects
« Reply #1456 on: March 06, 2015, 06:54:14 pm »
Katie I'm sorry I didn't see your post before the pictures and I'm praying for you also hang in there you got the most positive attitude of anybody I've ever seen.I'm praying for you!! Keep the faith!....Karen
Geno 1a
VL 2 million
DX May 1 2014
Bio June 5 2014
moderate fibrosis
Start Harvoni 2/5/2015
EOT 4/1/2015
 7/22/2014 alt 186 12/30  64  3/5/15  39
7/22/14  ast 114    12/30.  41  3/5/15  27
Don't know how I got hep C in my 20s I did snort coke a few times.
3/5/15 undetected
4/2/15 less than 15 VL ferrin levels normal
4/9/15 undetected!!
6/24/15 relapse VL 424,000
7/26/16 Started treatment today Harvoni and Ribavirin 24 weeks

Offline BG42

  • Member
  • Posts: 14
Re: Harvoni Side effects
« Reply #1457 on: March 06, 2015, 07:14:31 pm »
So today was day 5 for me. I've realized the importance of water. I know, everyone has said how important drinking water is for side effects. I got busy at work, forgot to drink water for a couple hours, and my body immediately felt it. Headache, mild nausea, and fatigue. After lunch, I just kept slamming the bottled water at work and I'm just now feeling better. So I've learned today to really just keep drinking water! And when you feel like you're not thirsty, drink more water! It keeps the sides away... for me anyway!

Have a good weekend all!

BG

Offline Keanu2015

  • Member
  • Posts: 89
  • “Life: 10% what happens and 90% how you respond"
Re: Harvoni Side effects
« Reply #1458 on: March 06, 2015, 07:15:59 pm »
Hi Karen,

      I was checking out your stats... Are you doing 8 weeks of therapy? Are you treatment naive?
2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

Offline Keanu2015

  • Member
  • Posts: 89
  • “Life: 10% what happens and 90% how you respond"
Re: Harvoni Side effects
« Reply #1459 on: March 06, 2015, 07:17:40 pm »
Hi BG,

So true my friend! keep slugging it down! lol Have a great weekend yourself!
2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

Offline Karen1124

  • Member
  • Posts: 76
Re: Harvoni Side effects
« Reply #1460 on: March 06, 2015, 07:47:26 pm »
Hi Keanau,
Yes this is my first time on treatment. I should add that to my profile.I go to the doctor on Wednesday the 11th to see what my viral load is and I'm a little nervous to say the least. I seen your numbers came down! Good job!! Best wishes! Life is Good! Karen
Geno 1a
VL 2 million
DX May 1 2014
Bio June 5 2014
moderate fibrosis
Start Harvoni 2/5/2015
EOT 4/1/2015
 7/22/2014 alt 186 12/30  64  3/5/15  39
7/22/14  ast 114    12/30.  41  3/5/15  27
Don't know how I got hep C in my 20s I did snort coke a few times.
3/5/15 undetected
4/2/15 less than 15 VL ferrin levels normal
4/9/15 undetected!!
6/24/15 relapse VL 424,000
7/26/16 Started treatment today Harvoni and Ribavirin 24 weeks

Offline Keanu2015

  • Member
  • Posts: 89
  • “Life: 10% what happens and 90% how you respond"
Re: Harvoni Side effects
« Reply #1461 on: March 06, 2015, 08:58:56 pm »
Hi Karen,
   Thank you! I'm really eating clean with an eye on liver health and sucking down the water! I also have a couple of fave drinks a day of a concoctions I enjoy. Half a cup of Welches light grape juice and half a cup of Knudsens "just cranberry juice" in am. Also a decaff green tea with silk light vanilla almond milk in pm. Been alternating healthy breakfast choices. One- mixing a cup of strawberries into Dannon activia vanilla light yogurt. Another is Quaker oatmeal "raisins and spice" half a packet mixed with 1/2 cup of Quaker old fashioned oatmeal and then adding some Sunmaid raisins and a bit of extra McCormick cinnamon. If it's still too bland I'll add a packet of Truvia to sweeten it up. Anyway thought I'd throw the forum a few of my secret weapons I use to help my Harvoni clobber the dragon! Also one final tip...Keep moving...exercise as much as you can handle. It keeps the blood moving and carrying the dead little suckers out!

Thanks for sharing.. Hopefully your test on Wednesday will be amazing!

Hope everyone is feeling well today! ~ K
2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

Offline kate0b1

  • Member
  • Posts: 293
Re: Harvoni Side effects
« Reply #1462 on: March 07, 2015, 07:49:22 am »
@bg42, water, pee, repeat, that is your new mantra. I notice right away if i don't drink enough, i started carrying a bottle around with me all day to refill and have a six pack in my car. (i even gave up my midmorning coffee for water  :'().

guys the yards are so pretty, my yard is a hot mess, we have been putting in a new fence for the last two summers/fall and it is completely torn up, I'm excited for the spring to get here so i can start replanting, that is actually why i have been trying to get the kitchen done so i can get outside. and @eric I'm glad you are clean lol

kate

Offline BG42

  • Member
  • Posts: 14
Re: Harvoni Side effects
« Reply #1463 on: March 07, 2015, 08:16:10 am »
@Kate, I can't seem to get enough water! When I woke up this morning I felt like I had a hangover, and I haven't drank alcohol in a couple years. (Stopped after I got the HCV diagnosis.) I am just trying to feel "normal" this morning, and I'm having a really hard time. Add to that the feeling of just being frustrated. It's slowly getting better today, but now I'm clutching that water!

@Keanu, I had the oats, cinnamon, and raisins this morning. Delicious! I also had a couple slices of Ezekiel Bread with honey.

Today is the worst that my "Harvoni Hangover" has been and it's only my 6th morning on the drug, but the air is dry because it's cold outside and the heat is pumping. 15% humidity in my house! Luckily, our Ohio weather is turning the corner for spring and it's supposed to be in the 50's this week!

So as soon as my headache goes away I'm going on a long run today to try and clear my head and reflect a little. I'm going 8 miles today. I committed to a half marathon before I knew that this treatment was available to me. The half marathon is about a week or so after my treatment ends. I figure maybe this goal will help distract me and see me through. Plus, that finish line will feel so much sweeter after I come out of the other side of this!

Offline Karen1124

  • Member
  • Posts: 76
Re: Harvoni Side effects
« Reply #1464 on: March 07, 2015, 08:30:14 am »
Hi Keanu,
Thanks for sharing you secret weapons lol!
But my doctor is very Bossy and I have been of smoothies since July! 20 grams of sugar a day or less! Exercise daily! He say this is !UST do!! So I am following his orders. Colorado girl shared a link you should check out. Everyone have a great day!! Having a massage today!! Life is Good!..... Karen
Geno 1a
VL 2 million
DX May 1 2014
Bio June 5 2014
moderate fibrosis
Start Harvoni 2/5/2015
EOT 4/1/2015
 7/22/2014 alt 186 12/30  64  3/5/15  39
7/22/14  ast 114    12/30.  41  3/5/15  27
Don't know how I got hep C in my 20s I did snort coke a few times.
3/5/15 undetected
4/2/15 less than 15 VL ferrin levels normal
4/9/15 undetected!!
6/24/15 relapse VL 424,000
7/26/16 Started treatment today Harvoni and Ribavirin 24 weeks

Offline Keanu2015

  • Member
  • Posts: 89
  • “Life: 10% what happens and 90% how you respond"
Re: Harvoni Side effects
« Reply #1465 on: March 07, 2015, 12:12:28 pm »
Hi Karen,

      Thank you for sharing also! Wow only 20 grams! I wonder if that counts for me too at 6'1" 230? I've been around 30 to 40 grams. Fitness pal allows for 56 as a daily bench mark to lose 2 lbs per week. Where can I find this Colorado girl link? which forum? I'm very interested. Enjoy your massage and day!

Great mantra Kate! it works lol

BG42 Great job on the oatmeal! I would watch the honey though. It's very high in sugar. If you are doing everything right and still have a headache you can take some acetaminophen if you'd like. I keep Bayer around. I take a 325 miligram tab and break it into a few pieces and just take like a 1/4. Lucinda Porter posted a good article about the misconceptions of acetaminophen. In my opinion, just use it seldom and in small amounts and you'll be fine.

#16 for me. I had some Kashi Berry crumble cereal with milk for breakfast and I feel good :) (11 mg sugar but I'll watch the rest of the day) Hope everyone is having a great day!
2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

Offline Karen1124

  • Member
  • Posts: 76
Re: Harvoni Side effects
« Reply #1466 on: March 07, 2015, 02:07:09 pm »
://www.hepatitiscentral.com/news/the_not-so-swee/

Hi Keanu,
 
Here the link on sugar.   Karen
Geno 1a
VL 2 million
DX May 1 2014
Bio June 5 2014
moderate fibrosis
Start Harvoni 2/5/2015
EOT 4/1/2015
 7/22/2014 alt 186 12/30  64  3/5/15  39
7/22/14  ast 114    12/30.  41  3/5/15  27
Don't know how I got hep C in my 20s I did snort coke a few times.
3/5/15 undetected
4/2/15 less than 15 VL ferrin levels normal
4/9/15 undetected!!
6/24/15 relapse VL 424,000
7/26/16 Started treatment today Harvoni and Ribavirin 24 weeks

Offline TTSP

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Re: Harvoni Side effects
« Reply #1467 on: March 07, 2015, 03:16:15 pm »
And here is another post on the same web site. (I copied and pasted because the link does not open to this article)

SODIUM and HEP C

Salt can be sneaky, abundant in curious places. Thus, identifying the following sodium-hiding spots can help with salt minimization. For those with cirrhosis from Hepatitis C, health professionals typically advise restricting sodium intake to 500 to 1,000 milligrams per day.

Reading all food labels is necessary to circumvent excess salt consumption. In the real world, we are sometimes lax in our label reading routine. Nonetheless, the following four food groups require this practice to avoid consuming unnecessarily high amounts of sodium:

Soda – Whether diet or regular, many sodas have a surprising amount of sodium. An investigation of one popular soda manufacturer’s website revealed several of their products contained between 40 and 65 milligrams of sodium per serving. Considering many people consume several sodas per day, that can add up to a lot of excess sodium.
Soup – Canned soups contain extremely high amounts of sodium for a supposedly healthful meal. Make sure to check soup labels, because just one cup of soup can harbor close to or over 1,000 milligrams of salt. While reduced sodium soups are better, they can still have more sodium than most people realize. Always check the sodium content in canned soup.
Beans – Loaded with fiber and protein while low in fat and cholesterol, beans are a staple for many health conscious folk. However, the canned versions often have extraordinary amounts of salt. One cup of plain baked beans can have over 1,000 milligrams of sodium, while ½ cup of black beans can have nearly 500 milligrams. Despite being less convenient, cooking dried beans is a great option. Otherwise, seek out low sodium beans, restrict serving sizes and always check the label.
Condiments and Sauces – While some condiments and sauces are obviously salty, the amount of sodium hiding in these refrigerator staples is surprising. For example, a leading brand of soy sauce contains 920 milligrams of sodium in just one tablespoon and ½ cup of some marinara sauces has upwards of 500 milligrams. The problem is that most of us go far beyond the serving size quoted on the label.
The four food categories listed above pose a problem to anyone who must restrict their salt intake. Representing the need for vigilance in reading nutrition labels, these foods are not the only high sodium consumables. Living with Hepatitis C that has progressed to cirrhosis is far from easy, but reducing sodium amounts will eventually become second nature. To minimize complications from ascites, ease the pressure in your blood vessels and keep a damaged liver from wrecking more havoc, avoid (or at least reduce) your inclusion of foods that pack loads of salt into your body.

I applied BOLD to the recommended daily sodium requirements. Most Americans are shocked when they realize how much their daily sodium intake is. I was.

I have been researching all aspects of Hep C for 14 years. There is an awful lot conflicting ideas. I have read this thread in its entirety. I don't remember who said it, (and its not really important who said it) "You must be your own advocate"

When I was diagnosed March 2001 a couple of things that Dr. Bacon Lead Hepetologist at St. Louis University Medical School said was, exercise but don't over do it! Salt can be sneaky, abundant in curious places. Thus, identifying the following stimulating spots can help with salt minimization. For those with cirrhosis from Hepatitis C, health professionals typically advise restricting sodium intake to 500 to 1,000 milligrams per day.

Reading all food labels is necessary to circumvent excess salt consumption. In the real world, we are sometimes lax in our label reading routine. Nonetheless, the following four food groups require this practice to avoid consuming unnecessarily high amounts of sodium:

Soda – Whether diet or regular, many sodas have a surprising amount of sodium. An investigation of one popular soda manufacturer's website revealed several of their products contained between 40 and 65 milligrams of sodium per serving. Considering many people consume several sodas per day, that can add up to a lot of excess sodium.
Soup – Canned soups contain extremely high amounts of sodium for a supposedly healthful meal. Make sure to check soup labels, because just one cup of soup can harbor close to or over 1,000 milligrams of salt. While reduced sodium soups are better, they can still have more sodium than most people realize. Always check the sodium content in canned soup.
Beans – Loaded with fiber and protein while low in fat and cholesterol, beans are a staple for many health conscious folk. However, the canned versions often have extraordinary amounts of salt. One cup of plain baked beans can have over 1,000 milligrams of sodium, while ½ cup of black beans can have nearly 500 milligrams. Despite being less convenient, cooking dried beans is a great option. Otherwise, seek out low sodium beans, restrict serving sizes and always check the label.
Condiments and Sauces – While some condiments and sauces are obviously salty, the amount of sodium hiding in these refrigerator staples is surprising. For example, a leading brand of soy sauce contains 920 milligrams of sodium in just one tablespoon and ½ cup of some marinara sauces has upwards of 500 milligrams. The problem is that most of us go far beyond the serving size quoted on the label.
The four food categories listed above pose a problem to anyone who must restrict their salt intake. Representing the need for vigilance in reading nutrition labels, these foods are not the only high sodium consumables. Living with Hepatitis C that has progressed to cirrhosis is far from easy, but reducing sodium amounts will eventually become second nature. To minimize complications from as cites, ease the pressure in your blood vessels and keep a damaged liver from wrecking more havoc, avoid (or at least reduce) your inclusion of foods that pack loads of salt into your body.

Another thing of interest: My original Hepatoligist was Dr. Bacon at St.Louis University Medical School. Got my DX their in March of 2001. Some of the things he emphasized were exercise (do not over do it!), avoid stress for me this included not over thinking stuff, I am a worry wart by nature), drink lots of water, research the disease as much as you can, and be careful. (there is a lot of misinformation out there)

Peace, and best wishes to all.  8)

Offline TTSP

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Re: Harvoni Side effects
« Reply #1468 on: March 07, 2015, 03:21:01 pm »
Sorry for the double post within that article.  :-\ My operating system or browser is not getting along with the posting aspect of this site.

Offline Karen1124

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  • Posts: 76
Re: Harvoni Side effects
« Reply #1469 on: March 07, 2015, 03:33:26 pm »
Hi ttsp,
Thanks for the post on sodium that was very interesting! Over the exercise I've already did it its called oxidation something to do with free radicals! you feel like you can't breathe and you get real weak I felt bad for two days so don't do it. Have a good day all!! Life is Good....... Karen
Geno 1a
VL 2 million
DX May 1 2014
Bio June 5 2014
moderate fibrosis
Start Harvoni 2/5/2015
EOT 4/1/2015
 7/22/2014 alt 186 12/30  64  3/5/15  39
7/22/14  ast 114    12/30.  41  3/5/15  27
Don't know how I got hep C in my 20s I did snort coke a few times.
3/5/15 undetected
4/2/15 less than 15 VL ferrin levels normal
4/9/15 undetected!!
6/24/15 relapse VL 424,000
7/26/16 Started treatment today Harvoni and Ribavirin 24 weeks

Offline Keanu2015

  • Member
  • Posts: 89
  • “Life: 10% what happens and 90% how you respond"
Re: Harvoni Side effects
« Reply #1470 on: March 07, 2015, 09:52:07 pm »
Hi Karen and TTSP,
       Thank you for the sodium and sugar articles. As far as the sodium TTSP...like you I have been very aware of it myself. Unfortunately, I haven't been sticking to 1000 mg but I try to keep it down as much as possible. As far as sugar is concerned Karen, I do way better on that. I don't add it to anything and my sweet tooth has all but gone by now. The most I see is in my cereals but I don't eat them very often and I choose healthy brands. I could do better on all of this stuff and I will do my best..Thank you! Karen for the new year I decided no more mr fat guy. I was sticking to a 30 minute plan of walk/run every other day or 2nd day depending how sore, increasing my runs by one minute every run (starting with 3 minutes first run in Jan. and ending up at 19 mins end of Feb.) I eventually fell off my goal. The reason was that after the 19 my heart started hurting a lot for a few days. When I started out for my 20 I had to quit at like 15. It would hurt when I coughed or took in a deep breath etc. I tried doing the usual things like taking low dose acetaminophen, reducing cholesterol (even lower!) etc. My blood pressure was perfect 121/73, pulse 50, but I was still having pain. Things were running through my mind like, "oh no is this from Harvoni?", I didn't want to even consider that! I don't want ANYTHING to stop me from finishing my course. I did some research and I realized that I must be suffering from costochondritis. I realized that perhaps it was because I had a car accident a year and a half ago. I had such rib pain in the back left area of my ribs that I couldn't exercise after that. Since then I fell into a rut and started gaining a lot of weight. Now I believe it caused my Hep C to advance like crazy. So Anyway here I am trying to fight all of it and regain my physique and health simultaneously. I put 2 and 2 together and it all made sense. I took a few days off and heart area (not heart!) started feeling better. I'm so glad that was the case. So yes ...take it easy is great advice for anyone! I ran for 13 today and will slowly work my way back up. Of course now I am already down 11 pounds so the runs will be less stressful  :) Hope everyone is well today! I'm looking forward to waking up to my 17th pill tomorrow am! Good night all!
2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

Offline TTSP

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Re: Harvoni Side effects
« Reply #1471 on: March 09, 2015, 09:19:44 am »
Hi Keanu and Karen,
All of the changes are pretty overwhelming to me. I just do the best I can and keep moving towards the goal. I have not given up my blueberries yet! It seems like every meal is give and take. Its a lot better than it used to be.

Keanu, sorry to hear about your accident.

I had the weirdest day yet yesterday. Just completely out of it and worn down. I woke up this morning feeling OK and like it was just a bad dream. 12 pills down 72 to go!

Best wishes to all. :)

Offline Katie

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  • Posts: 784
Re: Harvoni Side effects
« Reply #1472 on: March 09, 2015, 03:31:06 pm »
Update on remodel:  grrrrrr  carpenter called and said a big job came up that he couldn't turn down so I am on HOLD.  Not happy.....but I really like him and he does great work.  He's just branching out on his own and can't afford to pass up on a good paying job with duration.  I even baked him an apple pie, from my home grown apples!  He groaned when I told him that.  Serves him right!  HA!

Just had to share that as I have been talking about my remodel on and off for quite awhile now.

It will get there and I'll be a happy camper.  It just hasn't been that good of a week for me.  That's 2.  Wonder what is coming next?  (The old saying about trouble coming in threes!)

Katie
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline SIXFOOTFOUR

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Re: Harvoni Side effects
« Reply #1473 on: March 09, 2015, 04:48:15 pm »
Im new to the forum, first post. But have been on and reading for a couple months.

I felt I needed to post now to thank everyone for sharing, all of your experiences have helped me work through the stress etc of starting treatment.

Short history , severe trauma put me in hospital in 1971 for 6 months had a few transfusions and recall having non A non B hep.  later in the 90s found out I had Hep C. Ive had cronic pain due to spinal damage and transient joint pain, periods of weakness and "brain fog" I sused to think it was all due to the main injury but a lot of my symptoms fall into what Ive read here so im hoping to feel better overall if I can kick this.

Was 2 times recommended through UCLA to start treatment over the last 10 yr but due to many other problems (CNS and cronic pain) did not and kept hearing for the past 10 yr there will be a better treatment available . One that I would be able to tolerate the side effects. Im Fibrosis 3-4 with viral count over 6 million and elevated liver enzymes for years .

Well it happened and after 3 months of my MD fighting with Express Scripts that I needed to go on Harvoni not their choice of Viekira Pak (that they want to use do to a cost deal) I was approved and started last Friday on Harvoni.

Im very excited and so far the side effects have not been to bad , headache ,light nausea and a little tired but Im following all of the advice from this thread , water, Tylenol etc and its very bearable.

Any way I wanted to thank everyone you are doing a great service to us new comers by sharing.

I hope that Ill be done with this in 12 weeks.   
« Last Edit: March 09, 2015, 04:54:12 pm by SIXFOOTFOUR »
Sixfootfour
* Contracted Hep C 1971 post transfusion (non A - non
   B Hep dx in 1971)
* Dx as Hep C early 2000
* Geno 1b
* Stage 3-4 Fibrosis by Biopsy and FibroScan
* VL at start of TX > 6 mil
* ALT/AST High normal range at start of Tx 
* Started Harvoni 12 week course 3/6/15 -
   completion 5/29/15
* Undetected at 6 weeks on Tx
* ALT/AST Mid normal range at 6 week blood test
* Completed 12 weeks (84 pills) 6/28/15
* Undetected at 11 weeks & 6 months EOT

Offline kate0b1

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Re: Harvoni Side effects
« Reply #1474 on: March 09, 2015, 05:40:06 pm »
@sixfootfour, welcome i hope it goes easy for you.
@katie agh maybe you could send the pie my way (you know how i feel about cooking and it goes double for baking lol)

kate

Offline Karen1124

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  • Posts: 76
Re: Harvoni Side effects
« Reply #1475 on: March 09, 2015, 06:11:46 pm »
Hi sixfootfour,
Welcome to the family! We are in together. Today is my 33rd day of 56. I find out Wednesday what the viral load is I'm expecting to be undetected!! I haven't really had any side effects except for cold hands and feet. drink lots of water watch your sugar and your sodium and you should be good to go!! everyone here is very helpful and knowledgeable so if you have questions don't hesitate to ask.Life is good!.....Karen
Geno 1a
VL 2 million
DX May 1 2014
Bio June 5 2014
moderate fibrosis
Start Harvoni 2/5/2015
EOT 4/1/2015
 7/22/2014 alt 186 12/30  64  3/5/15  39
7/22/14  ast 114    12/30.  41  3/5/15  27
Don't know how I got hep C in my 20s I did snort coke a few times.
3/5/15 undetected
4/2/15 less than 15 VL ferrin levels normal
4/9/15 undetected!!
6/24/15 relapse VL 424,000
7/26/16 Started treatment today Harvoni and Ribavirin 24 weeks

Offline SIXFOOTFOUR

  • Member
  • Posts: 89
Re: Harvoni Side effects
« Reply #1476 on: March 09, 2015, 06:49:40 pm »
Thanks again too all on the forum. I'll update at the end of a week to see if nausea ,headache and fatigue are improved. But as I previously posted its tolerable
Sixfootfour
* Contracted Hep C 1971 post transfusion (non A - non
   B Hep dx in 1971)
* Dx as Hep C early 2000
* Geno 1b
* Stage 3-4 Fibrosis by Biopsy and FibroScan
* VL at start of TX > 6 mil
* ALT/AST High normal range at start of Tx 
* Started Harvoni 12 week course 3/6/15 -
   completion 5/29/15
* Undetected at 6 weeks on Tx
* ALT/AST Mid normal range at 6 week blood test
* Completed 12 weeks (84 pills) 6/28/15
* Undetected at 11 weeks & 6 months EOT

Offline Keanu2015

  • Member
  • Posts: 89
  • “Life: 10% what happens and 90% how you respond"
Re: Harvoni Side effects
« Reply #1477 on: March 09, 2015, 10:14:28 pm »
Hello everyone!

Today was day 18 for me. Doing well so far. I'm looking forward to day 28 when I can get my VL checked. I have a plan if it's UD. I'm going to keep exercising hard and flush any more of those little bastards out! If they're hiding in my fat cells they're toast! Gotta get em into my bloodstream to meet up with more of my Harvoni warriors! lol To be honest, it's been tough trying to stay disciplined on my new diet. I'm not doing great in the sodium area. I hope I"m not messing up my program with that.

Welcome 6'-4! You can whip this thing and you will! It's been in you for too long, time to go!! I'm glad you got Harvoni. It's a shame they are giving folks such a hard time with approvals. Hopefully that all changes soon. Best of luck to you!


Katie I'd like some pie also :) I"m sorry things aren't going as well as you'd hoped. I know you re doing your best to stay strong. We're all pulling for you. Please keep the faith. Oh and keep a baseball bat close also... so when that 3rd thing comes you can bat it out the window!  >:(

Hope everyone has a good night's rest... I'll check back soon! ~ K
2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

Offline HHburme

  • Member
  • Posts: 117
  • Harvoni start 12/13/14 12wks UD/24wk DET
Re: Harvoni Side effects
« Reply #1478 on: March 10, 2015, 01:47:58 am »
6F4 and Keanu....welcome !!!  You're on the way to HCV freedom. The orange magic pill works wonders. Just finished my 84 days last Friday. It really went by quickly. Was UD after 4 weeks and go for 12 wk BT tomorrow. Hopefully still UD.
Fight the Good Fight !
John
infected age 19, blood transfusion 1977, detected 2003  GT 1a, Harvoni relapse 06/15, Clinical Trial Study for SOF/VEL GS-9857 start 02/16. SVR12 Cured 08/16

Offline MEG

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  • Posts: 304
Re: Harvoni Side effects
« Reply #1479 on: March 10, 2015, 02:04:55 am »
Welcome 6'4" ;-)  This is a wonderful group of people from whom I've learned and shared so much....It sounds like your sides are manageable...Coming here kept me "honest" about my fluids---and that advice has been invaluable. Ya, keep us posted...

@Keanu It's great to hear that you're feeling well. Don't beat yourself up about the sodium. It's the intent and what matters most is that your conscious of and attempting changes. We can't, nobody can be 100% every day.

I'm feeling better from the sinusitis but have this residual fatigue---what is Harvoni's fault and what is my needing more recuperation time is impossible to for me to tease out. Not even going to try!

I do worry, however, re: my activity level. I love cycling, hiking, but I don't have the stamina to do more than slow and casual walks with my dog.  I think I'm going to get a massage to make sure my blood is circulating and that Harvoni scavenges every one of those @#%$@#%$!

Good nite to you and all,
« Last Edit: March 10, 2015, 02:07:08 am by MEG »
Geno 1a. IL28B+ with TT polymorphism.
Diagnosed 1993.
Liver Biopsy 1993 --inflammation.
Fibroscan 2014---no fibrosis.
ALT range---60s
AST range---80s.
Platelets: 200K range.
Viral load--2 million range.

Began Harvoni on January 23.
Finished 12 week course on April 19.

May 18---4 week EOT labs:
VL: UNDETECTED.
AST: 23
ALT: 22...........These have not been this low throughout treatment and since my 20s.

12 weeks EOT on July 15---Undetected.

Offline SIXFOOTFOUR

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Re: Harvoni Side effects
« Reply #1480 on: March 10, 2015, 11:14:29 am »
Yesterday was the fourth day on Harvoni but first day back at work. By end of day I was exhausted to ththe point of weakness and nausea got home and passed out  woke 2 hr later still not felling well but it was time to take my next dose (I'm doing them in evening about 9 pm) I noticed that less than an hour after taking the Harvoni I felt better.  Has any one noticed the at as they approach the 24 hr mark between pills they drop off and feel worse

Anyway thw is for th info and feedback
Sixfootfour
* Contracted Hep C 1971 post transfusion (non A - non
   B Hep dx in 1971)
* Dx as Hep C early 2000
* Geno 1b
* Stage 3-4 Fibrosis by Biopsy and FibroScan
* VL at start of TX > 6 mil
* ALT/AST High normal range at start of Tx 
* Started Harvoni 12 week course 3/6/15 -
   completion 5/29/15
* Undetected at 6 weeks on Tx
* ALT/AST Mid normal range at 6 week blood test
* Completed 12 weeks (84 pills) 6/28/15
* Undetected at 11 weeks & 6 months EOT

Offline bud345

  • Member
  • Posts: 7
Re: Harvoni Side effects
« Reply #1481 on: March 10, 2015, 11:49:39 am »
My firts ever POST!!!..Today is also my fifth day and what a difference a day makes. The first 4 days I felt no side affects but today...damn I'm hurting. Aching and feeling week and I read that the side affects were minimal. Hopefully it gets better.

Offline TTSP

  • Member
  • Posts: 38
Re: Harvoni Side effects
« Reply #1482 on: March 10, 2015, 12:19:08 pm »
@BUD345 It will hang in there. Day 13 for me. Just have let the stuff run its course.

Offline bud345

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  • Posts: 7
Re: Harvoni Side effects
« Reply #1483 on: March 10, 2015, 12:21:07 pm »
Hopefully...I went from someone that went to the gym 5 -6 days a week to having difficulty moving. Just a quick question...when does the initial effects were off? Or do they?

Offline Karen1124

  • Member
  • Posts: 76
Re: Harvoni Side effects
« Reply #1484 on: March 10, 2015, 01:34:37 pm »
Hi Everyone!
Just got my 4 week results!! Undetectable!!!
Whoooooowho!!!!!!! Life is Good!!! All you newbies hang in there, Harvoni works!! Karen
Geno 1a
VL 2 million
DX May 1 2014
Bio June 5 2014
moderate fibrosis
Start Harvoni 2/5/2015
EOT 4/1/2015
 7/22/2014 alt 186 12/30  64  3/5/15  39
7/22/14  ast 114    12/30.  41  3/5/15  27
Don't know how I got hep C in my 20s I did snort coke a few times.
3/5/15 undetected
4/2/15 less than 15 VL ferrin levels normal
4/9/15 undetected!!
6/24/15 relapse VL 424,000
7/26/16 Started treatment today Harvoni and Ribavirin 24 weeks

Offline SIXFOOTFOUR

  • Member
  • Posts: 89
Re: Harvoni Side effects
« Reply #1485 on: March 10, 2015, 02:03:31 pm »
Hi Karen

Congratulations on your results!

I noticed in your profile you were VL<2 mil is that why your on a 8 week treatment?
Sixfootfour
* Contracted Hep C 1971 post transfusion (non A - non
   B Hep dx in 1971)
* Dx as Hep C early 2000
* Geno 1b
* Stage 3-4 Fibrosis by Biopsy and FibroScan
* VL at start of TX > 6 mil
* ALT/AST High normal range at start of Tx 
* Started Harvoni 12 week course 3/6/15 -
   completion 5/29/15
* Undetected at 6 weeks on Tx
* ALT/AST Mid normal range at 6 week blood test
* Completed 12 weeks (84 pills) 6/28/15
* Undetected at 11 weeks & 6 months EOT

Offline TTSP

  • Member
  • Posts: 38
Re: Harvoni Side effects
« Reply #1486 on: March 10, 2015, 02:12:13 pm »
@bud345 If you look at some of the earlier posts, you'll find that different people have different experiences. I'm fairly early in Harvoni treatment myself. I have read enough on the subject to know that my biggest enemy is fear. I look at all of the evidence and try to make the right choices. Here is a link to help from Gilead, if you register you can then get assistance from RN's on their toll free phone lines.

Personally, I keep in mind 98% of what I read on internet threads does not come directly from a healthcare professional.

Best wishes, stay positive.  :)

Offline Mugwump

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  • Posts: 777
  • My number of posts means nothing, piscor ergo sum!
Re: Harvoni Side effects
« Reply #1487 on: March 10, 2015, 02:14:43 pm »
My firts ever POST!!!..Today is also my fifth day and what a difference a day makes. The first 4 days I felt no side affects but today...damn I'm hurting. Aching and feeling week and I read that the side affects were minimal. Hopefully it gets better.
You are right at the point where Harvoni is starting to effect the liver.  Make certain that you keep well hydrated. For the next week or so you might feel fairly weak but it will quickly pass. For me after the initial phase of the liver starting to create new cells I started to feel like superman after about 10-12 days. Also pay careful attention to your diet, eat foods that are easy to digest. Yes Harvoni can cause an upset stomach and without a doubt it will effect every one differently depending greatly on the level of liver damage.
I have stage 4 cirrhosis so it effected me more heavily than some. I became very dry mouthed, could not sleep for more than two hours at a time because of the need to urinate but all that passed as my liver started to get rid of the infection. And that is the way you have to think of this treatment, your liver is exchanging cells that were killed off by HCV and as it heals you will start to feel better than you have in years.
I noticed that if I did not drink enough fluid I became anxious and dry mouthed quite easily for the first 4 weeks of treatment. Hang in there, yes you might feel slight headaches, muscle weakness and other minor effects but they are not severe at all. I just caught a cold and so did my wife and it is a nasty bug that is going around, one of the ones that makes your muscles feel like someone hit you but over all after 13 weeks of treatment my strength is good and the side effects are minimal compared to other treatments.

@Karen1124
DO SOMETHING SPECIAL for yourself you deserve it, new shoes, whatever it does not matter. Keep up the good work, we all deserve this and need to be happy about ourselves. Beating this disease is no small thing and by being kind to ourselves we in turn can be kind to others.

@Katie
I know you will beat this disease, I want to see pictures of you catching a nice silver slab this summer smiling from ear to ear!

Eric
« Last Edit: March 10, 2015, 02:26:57 pm by Mugwump »
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline TTSP

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  • Posts: 38
Re: Harvoni Side effects
« Reply #1488 on: March 10, 2015, 02:16:38 pm »

Offline Katie

  • Member
  • Posts: 784
Re: Harvoni Side effects
« Reply #1489 on: March 10, 2015, 02:35:00 pm »
Karen: YAY...great news and yes to Eric's suggestion....treat yourself and celebrate!

Welcome Bud! You'll find this forum helpful in so many ways.  It's good to have the support of those who have gone through or are going through the same journey and understand the treatment and the ups and downs!  Be kind to yourself and rest when you need it and yes, stay hydrated.

TTSP:  It is good to research and become informed but we are the true test and our experiences are important to share.  I think Gilead is very interested in how everything is going in the real world too.  I am sure they are following and will modify future treatments based on our results.

Meg: Glad you are feeling better.  Sinititus can be hard to overcome so sending you healing, colorful light to give you an energy boost!   :D

Eric and everyone:  Thanks for the encouragement.  I am doing good!  I am still sleeping good and that is a bonus and my fatigue and brain fog I experienced prior to treatment hasn't returned so I am hopeful.  I am going in for acupuncture today and see my doctor tomorrow.  I am disappointed Gilead has not responded to my email but am trying to be patient.  Keeping busy, gave away most of my apple pie and hopefully the carpenter will be here on Sunday so I can get all of my clothes out of the living room!  I did fix a drawer runner on my antique dresser yesterday which I have been fighting the saggy drawer for a decade!  HA!  Closes like a dream now!

In just a couple months salmon season will be here and I am excited to go fishing.  I still have lots in my freezer and canned up.  I love canned salmon and think I'll have to make some salmon patties for dinner tonight.  and Eric...I LOVE Coho fishing.  One of the best things about living in SSE Alaska!

Enjoy the day everyone, and keep up the battle!

Katie
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline nadewitt

  • Member
  • Posts: 32
Re: Harvoni Side effects
« Reply #1490 on: March 10, 2015, 02:47:03 pm »
Welcome to the newbies and hello to everyone else! On Sunday I started my 4th week of treatment. The headache went away for a while on Friday morning but came back with a vengeance Friday afternoon and brought nausea with it. I called my doctor yesterday and got a prescription for Zofran. It seems to be helping. When I received my second bottle of Harvoni I was looking through the paperwork that came with it and learned something scary. "Hepatitis C virus can develop resistance and fail to respond to treatment if you don't take your medicine as directed by your doctor. Resistance can happen if you miss a dose, take your medicine at the wrong time, or take less medicine than directed. When medicines are taken incorrectly, the virus doesn't get killed completely and viral mutation can happen." Makes me want to be very very careful to never miss a dose!

Offline TTSP

  • Member
  • Posts: 38
Re: Harvoni Side effects
« Reply #1491 on: March 10, 2015, 04:24:30 pm »
@ meg I agree with you. My concern is generalities. I have cirrhosis, some don't. Some things are more of a concern to me. Some aren't.
I wish nothing but the best for everyone here. When I posted sodium info, it seemed to upset a few. That info was specifically for older folks with cirrhosis. Not to overwhelm anyone. I struggle to do the right thing every day. Like I said before a positive attitude goes a long way. The less I stress out the better.

Best wishes to everyone!  8)











Offline Keanu2015

  • Member
  • Posts: 89
  • “Life: 10% what happens and 90% how you respond"
Re: Harvoni Side effects
« Reply #1492 on: March 10, 2015, 05:25:40 pm »
Hello everyone! Day 19!
Welcome to all the new folks!
Just wanted to make a quick point to some you just starting out here. I was having minor issues, headache and sleepiness but they went away with the extreme water flushes I put myself through in the early going. However on day 4 I felt like I was in a dream and sickly a good part of the day. I think the kill off was just overwhelming my system then. Since then I have been slightly up and slightly down at times but generally steady and good without complaints. You can see my stats at the bottom. I came into this fight with pretty hard credentials and it showed me after 2 week labs that it's working. When you are spiraling down get aggressive with the water. This Harvoni stuff is serious about killing virus and it needs the dead stuff flushed out of its way. The accumulation of many dead cells could certainly cause headaches. Think about it. It makes common sense. If your digestive system is backed up you get a headache right? If your respiratory system is backed up with horrible chemicals, carbon, or diesel exhaust etc you'll get a headache. The same goes for endocrine and circulatory. Your body is sending you a message... wash me out! Got it? lol GOOD! keep drinking water and don't stop drinking water! The 300 Spartans at the battle of Thermopolaye had to pile up the dead Persians and throw some of them into the sea so there was room to kill more on the next day of battle. Otherwise they would have been piled up so high that no more killing of enemy could take place. That's my analogy and I"m sticking to it! lol
Katie I must get to Alaska! sounds so awesome!
HHBurme &Megthanks so much for the encouragement!
Karen congrats on your results! so happy for you!!
Nadewitt good hearing from you. Thanks for your warning! I agree... we must take this very seriously. I take mine upon waking every morning. After my first pill, which went at 11:30 am because I just got them and couldn't wait, I started walking my pills back slowly each day until I reached my early morning dose time. I decided that my body has more grumbly stomach acid first thing than any other time of the day so I just drop it right into the pool then and eat or have coffee an hour later. If it's a day that I run then it gets swirled around throughout my system by my heart pump. I'm imagining it forcing the medicine through hidden pockets or slamming hard into capillary endings where virus may be hiding. Please forgive me everyone. I'm a Marine! lol Hope everyone is doing well today! ~ K
2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

Offline Keanu2015

  • Member
  • Posts: 89
  • “Life: 10% what happens and 90% how you respond"
Re: Harvoni Side effects
« Reply #1493 on: March 10, 2015, 05:29:53 pm »
Mugwump and TTSP

Thanks for your insight as well. Very interesting stuff. All makes sense.
Appreciate it! Lets whip some virus! Good luck all... Gotta get to my boys.. Good night.
2000- dx Hep C - I think I got it in 85/86
1-16-15-re-dx Hep C A1, VL3.9 mil, 0.90 F-4 Cirrhosis
A3 necro inflammatory- 0.89 Severe activity
Ast 71 Alt 126

2-20-15 began Harvoni 12 wks -Treatment naive
3-5-15 Ast 37 Alt 28 @14 day labs
3-19-15 HCV RNA 'Quantitative'= Non Detected! @28days

12 Wk EOT (Tests taken day of last pill):
5-14-15 Ast 23 Alt 33 @ day 84 -HCV RNA 'Qualitative' =Not Detected!!!!!!!

Offline TTSP

  • Member
  • Posts: 38
Re: Harvoni Side effects
« Reply #1494 on: March 10, 2015, 06:47:25 pm »
Keanu, I'm with you. Lets knock Hep C out! Glad you're feeling better!

Offline Ruthie

  • Member
  • Posts: 105
Re: Harvoni Side effects
« Reply #1495 on: March 10, 2015, 07:31:40 pm »
Hopefully...I went from someone that went to the gym 5 -6 days a week to having difficulty moving. Just a quick question...when does the initial effects were off? Or do they?

They're seeming to get better after 2-3 weeks for most people. Everyone's body is different. Plus, there's just not much information yet. So it's really hard to tell.

The only thing you can do is keep up the water intake. And if your side effects are too bad, speak to your Dr about things to help.

My Dr's have me on phenergin and Prilosec for my stomach, klonopin for the anxiety and mood changes, and lots of rest for the fatigue. Plus, I'm doing acupressure.

I know it's not fun, but we can all do this! The results are worth the hell.

Offline Ruthie

  • Member
  • Posts: 105
Re: Harvoni Side effects
« Reply #1496 on: March 10, 2015, 07:36:05 pm »
Congratulations, Karen! It feels awesome to know those suckers are dying off, doesn't it?

Offline MEG

  • Member
  • Posts: 304
Re: Harvoni Side effects
« Reply #1497 on: March 10, 2015, 11:53:11 pm »
Hi everyone, newbies and all,

Meg here. I'm glad to hear everyone is continuing to fight the good fight.

Today was very busy(errands) and I am exhausted. But, it's much more than I was able to do just 10 days ago. I'm so grateful. What's fascinating is that again, despite feeling more tired by the hour---which usually depresses me--instead, I had this feeling of joy, of mental clarity(I've posted about this before). It felt wonderful!!! More of this to come is what I kept telling myself......

Body is begging for rest and I will close by sending you all prayers for healing and strength....
Geno 1a. IL28B+ with TT polymorphism.
Diagnosed 1993.
Liver Biopsy 1993 --inflammation.
Fibroscan 2014---no fibrosis.
ALT range---60s
AST range---80s.
Platelets: 200K range.
Viral load--2 million range.

Began Harvoni on January 23.
Finished 12 week course on April 19.

May 18---4 week EOT labs:
VL: UNDETECTED.
AST: 23
ALT: 22...........These have not been this low throughout treatment and since my 20s.

12 weeks EOT on July 15---Undetected.

Offline Karen1124

  • Member
  • Posts: 76
Re: Harvoni Side effects
« Reply #1498 on: March 11, 2015, 08:55:43 am »
Good Morning Everyone!
Sixfootfour you ask if my vl was why I'm on 8 weeks of treatment,
I think so but the doctor really didn't say thats why he just said that that would be the best for me.
Eric said to treat myself and I had a cheeseburger last night and it taco now I'm swelled up today can't eat that junk food!! Lol I'm also buying a new pair of walking shoes!
Thank you all for the well wishes!! Have a great day everyone! Life is Good!!   Karen
Geno 1a
VL 2 million
DX May 1 2014
Bio June 5 2014
moderate fibrosis
Start Harvoni 2/5/2015
EOT 4/1/2015
 7/22/2014 alt 186 12/30  64  3/5/15  39
7/22/14  ast 114    12/30.  41  3/5/15  27
Don't know how I got hep C in my 20s I did snort coke a few times.
3/5/15 undetected
4/2/15 less than 15 VL ferrin levels normal
4/9/15 undetected!!
6/24/15 relapse VL 424,000
7/26/16 Started treatment today Harvoni and Ribavirin 24 weeks

Offline chaser

  • Member
  • Posts: 17
  • We are all damaged in our own exquisite way, no?
Re: Harvoni Side effects
« Reply #1499 on: March 11, 2015, 11:50:27 am »
Hello all. I just wanted to share my experience so far. Genotype 1. One week from today I go for my first blood work. 21 days and pills into an 8 week regimen and hopefully the end of this. My first physical feelings after first taking Harvoni were very hard to explain. Had a few headaches, one or two bad, drinking plenty of water and liquids. Have achy back and some brain fog. Just in the last week I got hit with fatigue and an overall pooped out feeling. I'm one month shy of 64. Not an overall "bad" feeling. Just washed out. I felt after a week that something was definitely happening in me and it was a plus feeling. In some aspects of my being I feel as if a shadow is lifting. I do have some difficulty in staying asleep and I take my pill when I wake up. Maybe that is the reason, but when I decided on a time before treatment both me and my doc thought that would be good. So if I had heartburn or indigestion at night I could take antacids like Tums. So all in all, if this is the worst it's not bad at all. I'll be back. Take care all.

 


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