Author Topic: Finished 12 wks of Harvoni Jan 8 and not feeling good (Read 422625 times)

Cally Balmoral · « **Reply #100 on:** April 28, 2015, 01:13:51 pm »

Finished Harvoni 8 weeks ago. I am terribly fatigued all day, have nausea and headaches. Anyone else find they are feeling like this post Harvonoi?

Cally Balmoral · « **Reply #101 on:** April 28, 2015, 01:17:40 pm »

Finished Harvoni 8 weeks ago. I am terribly fatigued all day, have nausea and headaches. Anyone else find they are feeling like this post Harvonoi?

Katie · « **Reply #102 on:** April 28, 2015, 01:46:42 pm »

Quote from: Debula on April 28, 2015, 11:29:34 am

Hi all
I was wondering if the people who are feeling bad AFTER Harvoni EOT also had side effects during treatment?

I really hope you all feel better soon. This news is disturbing on so many levels.
I am only at the beginning of my Harvoni journey with another 22 weeks to go

Thank you

Hi Debula, My side effects were very mild with the exception of about 10 days during week 8 & 9 of treatment. In fact all of my side effects from Hep C went away with the 2nd pill. Felt better than in years!

I am 8 weeks out and feel good except for low energy and very tired in afternoon. Nothing major and am relieved none of the difficult symptoms of Hep C have returned.

I am sure everything will improve and I will find my new normal in another month or so. All of my blood work is better than in years LFT 16 each and I am now Undetected for the virus.

We all want to be perfect after the last pill but our bodies have been through a lot so we need to be patient and let ourselves heal.

We had 90mph winds and about 4 inches of rain last night and this morning! Lost power for 3 hours due to downed trees! Isn't life grand! I can finally have my coffee!

Katie

Debula · « **Reply #103 on:** April 28, 2015, 02:34:21 pm »

LOL it seems there are 2 threads about this and you quoted me from the other one
Katie thank you for the encouragement. I got a little freaked out when I read that people are feeling worse after Harvoni
I don't want to fee worse but I do want to clear this monster
My theory is that the ones who already felt crappy before Harvoni had no side effects because they were already used to feeling crappy (I am one of those people)

Then I was wondering what percentage of the people who actually had side effects feel better or worse after Harvoni.. Do some feel nothing (no change)
Just curious mostly
Are you 8 weeks out after EOT?

Be well and Enjoy your coffee

Katie · « **Reply #104 on:** April 28, 2015, 02:43:49 pm »

Yes...8 weeks since EOT. The time sure flew by and I did quote from this thread, it just started a new page. Have you had your coffee/ LOL!

It is disturbing that some folks are really having some major health issues, and it will be interesting to see if it is actually from Harvoni or just a coincidence. Everyone is different and previous health issues could react to such a strong treatment. I actually miss my Harvoni as it gave me more energy, in fact some days I felt giddy & wired. I was SO happy, it was almost not really natural. HA! My energy level is definitely lower and since I am sleeping so good it is strange I am so tired. Hoping that improves as I have lots of projects to complete!

Katie

Debula · « **Reply #105 on:** April 28, 2015, 02:51:56 pm »

oh brother maybe I haven't had enough coffee! LOL I apologize
I was thinking wow that Katie has mad skills copying and pasting from another thread. My brain fog obviously hasn't cleared yet haha

Yes Harvoni is pretty powerful so I guess it just an adjustment period.

Glad you are doing so well and your liver is functioning much better

I hope your fatigue goes away soon. I don't remember myself without fatigue.
Being virus free must be amazing!! I wish you everlasting SVR

mario555 · « **Reply #106 on:** May 01, 2015, 10:02:28 pm »

Lynn K. I took my last pill Wednesday (lost 1 pill at the beach..). So 24 weeks and 168 pills later I have had it! For the last 2 days my alarm on my watch didn't go off at 4 pm. What a strange feeling!
As for how I feel, I will have to agree with many people here. I am not feeling too well.. Ringing in my ear and headaches have 'increased' over the last 2 days! My "get up and go" on long winded projects is lacking and my energy level is medium.
My next VL is scheduled in 12 weeks + 2 weeks processing time (we are slower on the Canadian East Coast). Reading the posts here gives me an incentive to get a 6 weeks reading? I guess I will wait and see what people here find is optimum as a waiting period!
Finally, you should be finished with your treatment on Tuesday is it? Good luck to you and my best wishes for you finally getting a SVR12 (24 before you'll believe it I'd guess?)

Lynn K · « **Reply #107 on:** May 01, 2015, 10:11:21 pm »

Hi Mario

My Last pill goes down the hatch on Monday May 4th. Then I am going on a 1 week vacation Alaska inside passage May 13th.

I have asked my doctor about getting a 4 week post viral. I have read it is 95.5% predictive of SVR.

But yeah you are right I will have more faith in the result after week 24 post and would also like to check at a year. I think then I could finally exhale.

Best of luck to you Mario!

Katie · « **Reply #108 on:** May 01, 2015, 10:17:21 pm »

You are going to be in my neck of the woods Lynn! Hope you have a wonderful trip and our weather is good for you.

Congratulations on making it through your treatment. Only a couple more days to go!

Katie

Lynn K · « **Reply #109 on:** May 01, 2015, 10:21:00 pm »

Thanks Katie I will wave as I sail by :-)

WholeFoods · « **Reply #110 on:** May 01, 2015, 11:08:02 pm »

Hi there all,

This is my first post, I wanted to reply to let you all know I too have been having a bad time in the two weeks I have been off of Harvoni also. The first few days were great, then it went down hill fast. I have less stamina than when on treatment. Like I've been doing more than my body has energy for, tired. Tried to move some heavy boxes around and got real bad angina. More tired after that. Also have some brain fog.

Also had a lot of weird side effects while on treatment like dizziness, ringing ears, floaters, numbness and tingling, bloody noses. The first few weeks were scary bad fatigue. After that it was a literal roller coaster of symptoms. I drank all the water, ate good healthy food and lost quite a bit of weight, maybe partly from trying so hard to eat well and not get upset stomach. Often too tired to eat much.

Anyhow, I was DX'd non-a non-b in 1981, DX'd with hepc in 2000, 1b. At time of TX, I had a VL of 300,000 and F2 on BX. Not detected at EOT. I was on the 12 week plan. All my blood work during treatment always looked good. Enzymes fell to normal after one month, maybe less.

You are not alone feeling awful after stopping TX.

WF

Islandgirl · « **Reply #111 on:** May 02, 2015, 08:16:24 am »

Good Morning! I'm so happy for all of us who have completed our Harvoni TX and special congrats to Lynne and Katie who have suffered through so much. I'm excited about your trip too Lynne - you go girl!

Yes, I think we all are surprised to see we're not feeling as good as we thought we would post treatment - me included. I keep reminding myself what Katie (and others) said - Harvoni is a powerful drug and a hell of a battle was going on inside our bodies, guess we can't expect to immediately feel perfectly wonderful. I'm sure I did expect that, but not so. I finished on February 25 and remain UND, however, after 10 weeks, my energy level is only "fairly" good off and on and I also have a variety of other symptoms that may or may not be related to the aftermath of Harvoni. Today I'm reminding myself that I'm grateful for the chance we've been given and that every day is a victory. Thanks for being with me through the process as we complete our healing. I love you all. ...Islandgirl

WholeFoods · « **Reply #112 on:** May 02, 2015, 10:53:36 am »

I am thankful for the gift of Harvoni also. It's not too much to ask to kick it back down into a lower gear and let nature do what needs to be done. I'm obviously overdoing it- as per normal, lol! Thanks for the reminder island girl. I'm off to relax on the couch.

hepcme · « **Reply #113 on:** May 02, 2015, 12:40:21 pm »

Geno-1a, stage 2-3, Vl was 2mil. ast/asp 127/124 , ammonia 534, Ferritin 50,
NOW: 12 weeks Post 8wk Harvoni - UNDIE
just went for EOT labs 5/01/15
I was feeling so hopeful right after TX and had energy and a Bucket List to do for about a month...got alot done around the house but wasn't sleeping well, dreams were wild and wake up every two hours..tried some power gr. juices and ached everywhere...have ringing in left ear, eyes were blurry, some dizziness,
NOW: I have some depression coming back in, still ringing in ears, blurry vision, fatigue, low energy, can't be bored, I have too much to do...sleeping very well, no crazy dreams but dreaming, increased appetite, aching in joints big time...on top of it all AZ hs some terrible allergies this year , first for me...sneezing all the time...
I too am hoping for all this to balance and level..I believe the liver is rejeauvenated well and doing its job better..the toilet tells me it is fantastic..lol but the other organs that were affected cannot rejeuvenate like the liver so I must be patient...I think a year of healing will tell more ..that is nothing to ask from a long long suffering in a death bed.....thank you Jesus

Katie · « **Reply #114 on:** May 02, 2015, 12:59:31 pm »

Hi Hepcme. So happy you are UND but sorry for all of your issues. Yes, we must be patient. I am just curious how the rest of your blood work is doing?

I have lots of subtle improvements, however my energy level is really low in the afternoon where I feel as if I haven't slept in days. Not the heavy body fatigue, but just really tired, and that isn't like me. I also have started having vertigo just the past week. I bent over to pick up something and almost fell over and would have if I didn't have something to grab and stabilize myself. This is something brand new and it happens doing different things. It isn't a spinning, dizzy feeling but more like a wave where my balance is just gone. Very weird feeling. Is it from Harvoni? Possibly but I am just working through as it could just be an inner ear issue.

I have a lot of projects on my To Do list too, but have taken the attitude to do what I can as those projects will wait for me. One thing at a time. No more multitasking! HA!

We can get through this. Look at where we've been! Let us know what your lab work results are and have a great weekend. Do something special for yourself!

Katie

charly8 · « **Reply #115 on:** May 02, 2015, 01:21:02 pm »

Quote from: hepcme on May 02, 2015, 12:40:21 pm

NOW: 12 weeks Post 8wk Harvoni - UNDIE
just went for EOT labs 5/01/15

hepcme,

Just to clarify are you undetected at End of Treatment or at Post 12 weeks (i.e. SVR12)?

BattleTheBeast · « **Reply #116 on:** May 02, 2015, 01:22:29 pm »

Hey All,

Thought I'd check in with everyone. After 8 weeks of S/O and 20 weeks of Harvoni my doctor has stopped the treatment as of April 30, 2015. He felt the side effects I am experiencing along with the duration of treatment as well as my clear results indicated it was time. He felt that if it's going to come back after 28 weeks of treatment that 4 more aren't going to matter. I cried when I left the office with relief thinking that maybe just maybe some of these miserable side effects will finally start to dissipate.

Latest sides for me include the high blood ammonia level and over the last month I've developed high RA numbers, having major issues with my hands and stiffness, legs can get stiff as well. Overall achy, easiest explanation is the flu aches on steroids without the fever

. Pretty tired but have finally decided to go with my doctor's advice and am taking short term disability for a few weeks to allow myself time to detox and hopefully heal.

Going to see a Rheumatologist in late May, see the ID doc in a couple of weeks to check in and also get blood work again. Hoping the RA number and the high ammonia numbers go down as the Harvoni exits my body. For now it's all about green smoothies, continuing the tons of water and resting when my body says to.

Hope you are all hanging tough, the journey is a rough one for many of us but we are a tough breed and can get through it. Praying we all see that Magic SVR in 2015.

Hugs to all,

Mel

Islandgirl · « **Reply #117 on:** May 02, 2015, 01:43:30 pm »

Mel, so good to hear from you!!!!!!!!!!!!! I'm sending you a huge hug and lots of beautiful healing energy to comfort and see you through yet another struggle. You are such a trooper and you are always in my prayers. Love you sis! ...Islandgirl

BattleTheBeast · « **Reply #118 on:** May 02, 2015, 01:46:44 pm »

Quote from: Islandgirl on May 02, 2015, 01:43:30 pm

Mel, so good to hear from you!!!!!!!!!!!!! I'm sending you a huge hug and lots of beautiful healing energy to comfort and see you through yet another struggle. You are such a trooper and you are always in my prayers. Love you sis! ...Islandgirl

Hugs and lots of love back at you Islandgirl!!

Katie · « **Reply #119 on:** May 02, 2015, 01:51:38 pm »

MEL!

Now our forum is complete with you back! You have been missed.

I just know you will start to feel better and am always thinking of you. Take care my friend and healing thoughts sent to you this beautiful spring day!

{{{{{HUGS}}}}

Katie

Islandgirl · « **Reply #120 on:** May 02, 2015, 02:09:14 pm »

Well said Katie! Glad to hear it sounds like you're having a beautiful Spring day there too.

Simply gorgeous here also! I have participated in nature a bit more than I expected this year and am the slightly horrified/proud "grandmother?" of 24 or so yellow rat snakes hatched in my flowerbed right outside the patio door! The little rascals have all disappeared but I know they are around somewhere. Snakes are not my favorite creatures but I do recognize that these are good guys who keep the undesirable critters at bay. I could do without the squirrel sabotaged baby birds dropping on my patio though! Lately, I have to do a quick check before I let my dogs out.... Spring has definitely sprung some surprises on me this year! lol PS, I'm no as brave as I may sound - just always take care of whatever needs to be done anyway lol hugs, ...Islandgirl

BattleTheBeast · « **Reply #121 on:** May 02, 2015, 03:28:40 pm »

Quote from: Katie on May 02, 2015, 01:51:38 pm

MEL! Now our forum is complete with you back! You have been missed.

I just know you will start to feel better and am always thinking of you. Take care my friend and healing thoughts sent to you this beautiful spring day!

{{{{{HUGS}}}}

Katie

Hugs right back at you! Missed all my sweet sisters and brothers here. I'll try and visit more often now that I'm on break. Just managed to go to Target and grab and few things but it totally wore me out and got super overheated; it's only 73 here so not sure why but just came home, drank 2 big water bottles and threw on some shorts!

Working on remembering this is a process and I'm going to feel better before I know it like all of you too!

M

Lynn K · « **Reply #122 on:** May 02, 2015, 07:42:00 pm »

Hi Mel WELCOME BACK!!!

I take my last Harvoni on Monday May 4th so guess we will be getting all our post tx results around the same time.

Hope you feel better and better every day!

hepcme · « **Reply #123 on:** May 02, 2015, 10:53:41 pm »

I think Harvoni exaggerated the symptoms of HCV...vertigo is a symptom of HCV I had it early TX of Harvoni and i can still get those waves ..didn't think of the inner ear thing associated with the tinnitis issues...hmm glad they pass and not as bad as on TX I ran into some walls getting out of bed...this is from HepCentral:
CHRONIC SYMPTOMS OF HEPITITIS C:
(and after 35 yrs , I would say we all were chronic ) - - - -
Anxiety
Arthritis
Ascites (swelling in the stomach area)
Blurred Vision
Chills
Dark Urine
Decline in sex drive
Depression
Dizziness
Dry Skin
Edema (swelling of the hands, feet & legs)
Excessive Bleeding
Excessive gas
Eye or eyesight problems (blurred vision or dry eyes)
Fatigue
Fever
Flu-like symptoms
Gallstones
Gray, yellow, white or light colored stools
Headaches
Hepatalgia (pain or discomfort in liver area)
Hot flashes
Indigestion
Inflammation in the joints
Insomnia
Irritability
Itching
Jaundice (yellowing of eyes and/or skin)
Joint pain
Mood changes or swings
Memory loss, mental confusion
Menstrual problems
Muscle aches
Nausea
Rashes/Red spots
Red palms
Sensitivity to heat or cold
Sleep disturbances
Slow healing and recovery
Susceptibility to illness/flu
Sweating
Vertigo
Vomiting
Water retention
Weakness
Weight gain
Weight loss

hepcme · « **Reply #124 on:** May 02, 2015, 10:55:14 pm »

So that puts a lot of healing to do ..in perspective....

BattleTheBeast · « **Reply #125 on:** May 02, 2015, 11:02:10 pm »

Thanks Lynn,

I figure it's going to take a bit to clear it all out so for now I'm just chilling out, listening to my aching body and not pushing myself. Hopefully my short term disability will get approved and I can get back to me before I have to go back to work. This has honestly been the toughest year ever for me physically and I'm looking forward to a reprieve from it

My EOT was negative (been negative since week 9)and I'm certain he will continue to test me every two weeks now that I'm off work, he's monitoring me closely since he's pulled me off work. I'm really hoping those high ammonia and RA numbers start dropping. Monday I'm getting an MRI of my back because of the intense back pain. I'm still holding out this crap I'm dealing with is all My body's reaction to Harvoni. have an appointment with a Rheumotologist the end of May if my hands don't start feeling better and the RA number stays high.

I'd really like a week in the Sun maybe in Mexico as soon as I'm up to it. Saw you've got a cruise planned (hooray!). We all deserve an amazing vacation!!

Hope your doing ok, it's such a relief to be done treatment, hopefully this will mean SVR for us both and by Halloween we will have that behind us.

Stay well,

Mel

hepcme · « **Reply #126 on:** May 02, 2015, 11:54:01 pm »

Know some people who cured RA with gerson therapy, very strict to follow but it is gone...don't know much more about it..but it is about juicing....took her two years I think not any longer anyway...she is herself now and is rid of HCV also...

BattleTheBeast · « **Reply #127 on:** May 03, 2015, 08:20:28 am »

Quote from: hepcme on May 02, 2015, 11:54:01 pm

Know some people who cured RA with gerson therapy, very strict to follow but it is gone...don't know much more about it..but it is about juicing....took her two years I think not any longer anyway...she is herself now and is rid of HCV also...

Thanks for sharing but the extremes of Gerson aren't for me. Coffee enemas? Nah, not so much for this girl! I remember Michael Landon trying those when he was diagnosed with Pancreatic Cancer. I'm all for juicing, have my Vitamix out and use it almost every morning. I'm also up for a healthy diet , staying away from processed foods, etc.

I honestly feel like it's going to take time but I will get better and these challenges I have now hopefully will slowly go away over the next few months. If they don't, well I'll deal with it

Mel

Carmine · « **Reply #128 on:** May 03, 2015, 08:49:51 am »

Hi I'm new to this just started Harvoni 4 days ago, my first two nights nights couldn't sleep day three I was having pain in legs and hips but I slept day 4 a little nauseous and had some diarrhea and a little shortness of breath, I have had Hep C for many years and had treatments two other times this is my first time with Harvoni and I'm hoping it works

BattleTheBeast · « **Reply #129 on:** May 03, 2015, 09:36:47 am »

Hi Carmine,

Welcome and please know that everyone's treatment isn't always as tough as mine has been; some folks get through without any side effects at all.

My best advice after finishing treatment recently is to drink lots and lots of water, eat as healthy as you can, don't take any other medications without checking with your dr; even over the counter like rolaids can impact the treatment. Just listen to your body and allow yourself to go with the flow of how you're feeling. A walk in the evening when it's a little cooler would be a good thing when you feel
Up to it.

Are you on for 24 weeks?

Mel

Getting well · « **Reply #130 on:** May 03, 2015, 04:07:40 pm »

Quote from: BattleTheBeast on May 02, 2015, 01:22:29 pm

Hey All,

Thought I'd check in with everyone. After 8 weeks of S/O and 20 weeks of Harvoni my doctor has stopped the treatment as of April 30, 2015. He felt the side effects I am experiencing along with the duration of treatment as well as my clear results indicated it was time. He felt that if it's going to come back after 28 weeks of treatment that 4 more aren't going to matter. I cried when I left the office with relief thinking that maybe just maybe some of these miserable side effects will finally start to dissipate.

Latest sides for me include the high blood ammonia level and over the last month I've developed high RA numbers, having major issues with my hands and stiffness, legs can get stiff as well. Overall achy, easiest explanation is the flu aches on steroids without the fever . Pretty tired but have finally decided to go with my doctor's advice and am taking short term disability for a few weeks to allow myself time to detox and hopefully heal.

Going to see a Rheumatologist in late May, see the ID doc in a couple of weeks to check in and also get blood work again. Hoping the RA number and the high ammonia numbers go down as the Harvoni exits my body. For now it's all about green smoothies, continuing the tons of water and resting when my body says to.

Hope you are all hanging tough, the journey is a rough one for many of us but we are a tough breed and can get through it. Praying we all see that Magic SVR in 2015.

Hugs to all,

Mel

For what it's worth, I've seen a rheumatologist for several years. That's when I found out I had HCV.

Long story short...HCV can cause extremely high RF. I found this out from the second rheumatologist. Mine was 486. At about 18 or 19, they consider you positive for RA.

My most recent rheumatologist tells me it will be several months after HCV treatment before he will want another RF test as it can take some tome for this factor to go down after treatment.

Good luck.

BattleTheBeast · « **Reply #131 on:** May 03, 2015, 04:43:19 pm »

Getting well,

Thanks so much for sharing that. This past year has been a whirlwind for me beginning with finding out I had HCV and F4. Not sure how I got it but doesn't matter anyway.

I honestly was surprised when the RA popped up; I was swelling and thought my stiff hands and achy limbs were from water retention. I'm at the point now where I don't want to read another or research any more. Plus I really appreciate the personal experiences of others, much more insightful than any study or document for me. Truthfully I think I was on the meds so long my body started freaking out even more.

Thanks again

Mel

charly8 · « **Reply #132 on:** May 05, 2015, 09:19:59 am »

Well I am on this list as well...

My info is in my signature.

I have been off treatment (Harvoni & Riba) for 2 1/2 weeks now. I was feeling great on just the Harvoni (best I felt in years). Added the Riba 1 month in, started the typical Riba symptoms 3 weeks later which I am familiar with, slight shortness of breath, slight fatigue, no pains.

After stopping treatment about 1 week later, I started feeling much more tired and started having pain in my right side (liver inflammation type). Unfortunately, I feel like I did before when I relapsed after 72 weeks of Pegasis & Riba.

Going to keep optimistic (although its hard when I keep feeling liver pains and exhaustion). I have my 4 week SVR test in about 10 days. I will post my results approx. 5/22 or so.

kate0b1 · « **Reply #133 on:** May 05, 2015, 11:34:26 am »

@charly8, hang in there, a lot of us felt pretty bad the last few weeks of treatment and the first few weeks out, i am today 8 weeks out (12 week labs first week of june), and i am really just now starting to feel like the aches and tiredness are leaving.

kate

kate0b1 · « **Reply #134 on:** May 05, 2015, 11:38:56 am »

@mel, hey its good to see your face ! I'm so happy you and lynn and mario are done and "waiting"

trying to catch up here, crazy busy, katie what are you building/redoing? Islandgirl how are you and your mama? and Lynn I'm jealous of your trip, could you bring us some salmon?

stay well everyone

kate

Islandgirl · « **Reply #135 on:** May 05, 2015, 03:42:29 pm »

Hi Kate! Mom and I are doing OK, thanks for asking. Mom is finally able to do her early morning walks, using her walker which she is no longer allowed to be with out. I've put her portable oxygen in the pouch under the seat and she puts in her water bottle and a few dried apricots and prunes. She wears her Great Call monitoring "necklace" so she can call them and they will call paramedics or me, depending on type of assistance she needs. Also, this is pared with a link that I can see where she is on my Android or computer. If she's gone too long I can see where she is on her walking route and head that way. She stops to rest or visit with neighbors and they all look out for her too. At 91 she sleeps more in the day so getting out for her walk is even more important for exercise and social interaction - not to mention fresh air

Mel, is your grandson still with you and how is that going? I hope he is able to be of help to you. Mom is not able to cook, clean or do much besides bathe and dress herself, although she will heat something in the microwave. She has advanced maccular disease problems and that also limits her ability to do things for herself. I know it must be really difficult for you too when you've been feeling so badly - I think of that when I read between the lines of your posts.

I'm finally feeling somewhat more energy as days pass but sure not where I'd hoped to be. I expect it's the same for most of as we recover. I keep all of us in my prayers and am focusing on positive healing for all. love, ...Islandgirl

Katie · « **Reply #136 on:** May 05, 2015, 03:55:42 pm »

Quote from: kate0b1 on May 05, 2015, 11:38:56 am

@mel, hey its good to see your face ! I'm so happy you and lynn and mario are done and "waiting" trying to catch up here, crazy busy, katie what are you building/redoing? Islandgirl how are you and your mama? and Lynn I'm jealous of your trip, could you bring us some salmon?

stay well everyone

kate

Hi Kate! I am starting my new project of building a bookcase. I have been low energy and some mild vertigo so don't want to use the table saw until I feel stronger, but I've drawn out the design and pulled out the wood and need to get it done so I can put my books away and get rid of the boxes in my living room! What are you up to?

Good hearing from you! Life is good and patience is important as our bodies adjust and heal. I am just a bit low on patience right now as I want to start checking stuff off my "TO DO List"! I think the good weather will benefit all!

Hi Island Girl! Glad your mom is doing OK and can still enjoy the neighborhood. I have an aunt who just turned 99 and she is quite amazing. She's in Minnesota so I don't get to see her much. I plan to visit next April for her 100th!

Katie

BubbaT · « **Reply #137 on:** May 06, 2015, 03:13:36 pm »

Quote from: BattleTheBeast on May 03, 2015, 04:43:19 pm

Getting well,

Thanks so much for sharing that. This past year has been a whirlwind for me beginning with finding out I had HCV and F4. Not sure how I got it but doesn't matter anyway.

I honestly was surprised when the RA popped up; I was swelling and thought my stiff hands and achy limbs were from water retention. I'm at the point now where I don't want to read another or research any more. Plus I really appreciate the personal experiences of others, much more insightful than any study or document for me. Truthfully I think I was on the meds so long my body started freaking out even more.

Thanks again

Mel

Hey Mel, there you are! I was wondering where you went?
I'm happy to hear you are fighting like a real trooper, I am sorry to hear you are not feeling well, I don't know if you heard my deal but, since I started drinking juiced lemons in water, 4 times or more a day, I have been doing a lot better, my ammonia was at 222 prior to tx, and I had some pain and swelling and blisters on both hands, the GI took pictures to send to gilead, this lasted about 2 weeks and now has gone and I'm no longer having this issue, I have definelty changed my diet at F4, and lost 15 lbs, and eating wild salmon, no red meat, only raw organic foods and steamed veggies, but for me, I think juicing lemons in the water with stevia is working...

I took FLMA for 8 weeks to finish tx, and have not been pushing myself at all, I sleep 8-10 hrs a day and have stopped stress everywhere I could.. I'm on week 9 of 12, my ammonia is back normal, all other labs are normal except ferritin is above normal, I also agree with you, I value real experience over studies...

Did you have the hepc and b vaccines? During treatment?

Always liked reading your comments, God bless...

Lynn K · « **Reply #138 on:** May 06, 2015, 03:43:35 pm »

Hi BubbaT

Hep c vaccine? Do you mean hep A vaccine because I don't believe there is a hep c vaccine yet.

I did my hep a and hep b series and also the pneumonia vaccine done when I found out I had cirrhosis in 08 per my doctors instructions the day I was given the diagnosis before I left the office.

I was holding off on the Prevnar 13 new pneumonia vaccine until after I finish treatment. Guess that is not on my list of things to do as I finished my 24 weeks of Harvoni 15 weeks of Riba on Monday.

Good luck to all

moma · « **Reply #139 on:** May 06, 2015, 10:05:02 pm »

Hi Everyone!
I'm still around just haven't written in awhile. Today is 4 wks off treatment. And like some of you I thought the day I stopped Harvoni I would feel GREAT, but not the case. I do have more energy everyday, but by 3'ish I'm pooped! Brain fog, better? Doing acupuncture every week. Helps my mood and achy joints.
My youngest daughter turned 44 last Monday, thus making it my 1st time in 44 yrs hopefully HepC free. Thanks for the blood transfusion!!!!!
I'm sorry for anyone still having side effects or body adjustment troubles after stopping treatment, but I have to say, it does make me feel better knowing this is normal and that your all out there still fighting the fight.
Speaking of fights- Did anyone watch the Pac-Man, Mayweather fight on Sat? What a disappointment.
Continued healing- MoMa

koifish54 · « **Reply #140 on:** May 09, 2015, 11:27:57 pm »

I took last pill may 4 12 week treatment felt great except couple little headache s didn't even need to take meds for it 2 wks into treatment all blood work normal except platelets 126 low ud both 4 and 8 weeks wait ing for 12 week results . Started to feel achey at week 11 and still don't feel good I do have thyroid hasimotos and my numbers for antibiotics are. 100 should be 9 achey muscle and are symptom of thyroid . I guess it takes 10 days for Harvoni to get out of system so gotta wait for results eot I have read Different post that people are arthritic type aches

Bob V · « **Reply #141 on:** May 12, 2015, 01:07:46 pm »

Hi Mel
I've been gone for awhile too. Sorry you had to stop treatment but sounds like the right call. I hope your follow up's go well.

Hugs Bob

pmm · « **Reply #142 on:** May 12, 2015, 02:39:16 pm »

Hi All,

I haven't checked in for awhile but have really been feeling crappy since finishing tx. I finished my 8 weeks of Harvoni on February 20. I was UD at 4 weeks, but with high ammonia level, which I never had before. I was UD and end of tx and ammonia levels back to normal. My 12 week post-tx blood test is May 26 (hoping for UD!) and I see the hep doc on June 9.

The first 4 weeks of tx were a breeze but then I started getting side effects-high blood pressure, shortness of breath, feeling lightheaded, anxiety (all of which I had never had before) and unfortunately they have continued intermittently since then. I felt fine before treatment and am now second-guessing myself on treatment. I hope all this anxiety and other issues are just my body recovering from such a strong drug.

Bob V · « **Reply #143 on:** May 12, 2015, 02:56:56 pm »

Pmm

pattie

Bummer on the side effects. I had some too, mostly the being tired but I did have one day with hypertension and I've never had a high BP.

Good luck with your labs. BTW maybe I missed something but 12wks post TX for you is May 15, just sayin.

Bob

pmm · « **Reply #144 on:** May 12, 2015, 03:03:41 pm »

Bob,

Thanks for your reply. My hep doc scheduled my (supposed) 12 week EOT blood test for last week of May because she is on vacation and can't see me until June 9-go figure!

hepcme · « **Reply #145 on:** May 12, 2015, 07:57:40 pm »

I really don't get this forum ...but here goes...in response to pmm....I too had respitory issues , labored breathing, heart palipations, anxiety, dizziness , vertigo on Tx and more ,...I was a goner anyway so i just ran with it...the sides always were doable and passed...the instruction booklet said it was an allergy to med and if it got severe call...call what

i was a dead one walking either way..VL was 2mil -enzymes 124/127 ammonia level was over 500...feritin was 58...eyes were so blurry thought I was going to have to get a cane or a dog...geno 1a stage 2-3......I am now post (01/30/2015) 13week of 8 week TX Harvoni my doc won't test for ammonia , says it should not have been taken anyway as it is not an accurate test by blood should be arterial...so now enzmes are norm Undetected now of virus, but still need labs done...thanks for the confirmation on the ammonia as I do remember where my keys are now and don't have all the fears of not knowing what I am doing...I feel great now and have some aches and pains yet getting better an better by th day....:]

Katie · « **Reply #146 on:** May 12, 2015, 09:32:08 pm »

Hepcme: I am so happy you are doing better and so am I, however I was no near as sick as you. My liver was still fine and it makes sense that not having fibrosis would make everything easier.

I have been really tired, in spite of sleeping really well and no ambition at all. Just barely able to keep up with normal daily activities, and I have always really been a worker with my projects always moving forward. I missed Harvoni as it gave me enough energy to do upgrades and I remodeled my 2 bedrooms, doing much of the work myself.

After I finished treatment (I became undetected at 8 weeks post) I could barely pick up the house and cook meals. I have been eating lots of soups so I could make a pot and eat it all week. Today I am feeling so much better. I actually planted my begonias, met a friend at a nearby marina and visited. It has been MONTHS, since I socialized with anyone other than my doctors or those who were kind enough to drop by and check on me. All of my blood work is perfect. ALT 16 AST 16, everything normal and my liver ultra sound unremarkable. I wasn't really concerned but I am relieved I am finally out of that deep hole of exhaustion and back to being able to enjoy my surroundings and friends. I am being tested at 16 weeks post TX which will be the end of June and I am confident I will still be undetected and cured, however I won't be really celebrating until week 24. What a miracle that will be.

I wish you and Pattie too, the very best, and for those of you that are having negative side effects after treatment, hang in there. It does get better!

Katie

WholeFoods · « **Reply #147 on:** May 12, 2015, 10:25:35 pm »

If I would have seen some of these more recent replies a 10 days ago, I may have avoided a can of worms, who knows. But I was moving some boxes around in the garage and got quite a bit of angina, tired afterward. Next day a co-worker encouraged me to be seen by my Dr. Since he was out it was suggested I go to urgent care. They did a chest X-ray EKG and cardiac enzyme test. Everything looked okay except for a nodule in one lung. Now they want a CT with contrast and I'm freaking out. First of all, I just had one last August for an enlarged portal vein they found on ultrasound, but all of this is very hard on the kidneys including the 12 weeks of Harvoni I just finished a month ago. I was never a heavy smoker and quit almost 10 years ago. I'm not a happy camper, in fact, feeling anxiety and depression. The upside, the angina and shortness of breath are now finally starting to subside. I will be stunned and amazed if I make SVR at this point with all the stress from "other" health issues that have cropped up. I wish those Dr.s would just leave me alone so I can battle the dragon first, sheesh!! Sorry for being so negative, but a person can only take so much!

hepcme · « **Reply #148 on:** May 13, 2015, 12:26:28 am »

Kate you sound like me I demoed my kitchen, tore out the walls , busted up ceramic counter top and grout, took out the sink dishwasher and cupboards....I remember buying this place a year ago thinking , ahhh this kitchen is ugly I will just paint and get a new countertop...then I thought NO this is to too big of a job...NOT FOR HARVONI...give me a sledge hammer...I took it out and put new drywall in mud, tape texture and paint ...VOILA...called the designer and they just came and put new up....looks grand....NOW , I try to get going and sleep well too but can't get motivated and feel like it is such a chore to get up and get going...I ususally start the day at 12:00 lol..don't know what happen, I feel good just don't want to do stuff ...I push myself though...to day I did molding on the back patio and took the door off and cut the bottom off 1" so it could clear the tile ...anyway thanks for sharing...How long ago did you stop TX...I was Jan 30..2015

Katie · « **Reply #149 on:** May 13, 2015, 01:57:59 am »

Quote from: hepcme on May 13, 2015, 12:26:28 am

Kate you sound like me I demoed my kitchen, tore out the walls , busted up ceramic counter top and grout, took out the sink dishwasher and cupboards....I remember buying this place a year ago thinking , ahhh this kitchen is ugly I will just paint and get a new countertop...then I thought NO this is to too big of a job...NOT FOR HARVONI...give me a sledge hammer...I took it out and put new drywall in mud, tape texture and paint ...VOILA...called the designer and they just came and put new up....looks grand....NOW , I try to get going and sleep well too but can't get motivated and feel like it is such a chore to get up and get going...I ususally start the day at 12:00 lol..don't know what happen, I feel good just don't want to do stuff ...I push myself though...to day I did molding on the back patio and took the door off and cut the bottom off 1" so it could clear the tile ...anyway thanks for sharing...How long ago did you stop TX...I was Jan 30..2015

The end of my 12 week treatment was Feb 25, 2015 and I came back DETECTED with VL <15 IU/mL with all blood work good. I was bummed out, but then saw the studies where those strong responders, detected at end of treatment actually cleared by 12 weeks. My doctor ordered another VL test which fell out at 7.5 weeks which thankfully came back UNDETECTED and by that time I was too exhausted to even get excited. Actually I was thrilled but didn't feel the adrenalin rush or the JOY.

I continue to experience subtle improvements, things I didn't even realize were from HepC that I have had for years, prior to diagnosis but no motivation and just worn out. Like I said, today I felt better than I have and I didn't even get enough sleep because the northern lights were out and I stayed up until 2:00 in awe of them. Me and my dog on the deck shivering. Seems I get colder easier too. Maybe the Aurora Borealis energized me. The sky is clear again tonight, so heck with sleep. I'll have to check the sky before I turn my lights off.

May all the beautiful, heavenly lights shine down on all of you!

Katie

hepcme · « **Reply #150 on:** May 13, 2015, 12:06:48 pm »

Wow that is so cool, where do you live

I am getting too much sleep I think...I sleep until 8:30am...like the ol' days and asleep by 10:30pm....I just listen to the body and do what I think it needs...as I know ...this too shall pass ...it alllll comes to pass...guess that is good , I get bored easily...
Wow , what a story on your TX...hope you don't mind I shared it with another lady who I keep in touch with she got two extensions for 12,& 24 weeks...geno-1a 40yr HCV but not really high labs...she was scheduled for 8 weeks TX harvoni, still detected at 8 wk(210)... she is awating her 12 week lab by Friday...so I shared your story to help her exhaustion...the anticipation and hope is strenuous...thanks Katie
Anne

Bob V · « **Reply #151 on:** May 13, 2015, 12:17:59 pm »

hepcme
When I was on Harvoni I slept every afternoon for 2-3hrs. After week 2/3 I was always tired, some days more then others. I did some exercise in the mornings and would just nap in the afternoon.

And yes sounds Katie lives in a nice place.

Islandgirl · « **Reply #152 on:** May 13, 2015, 12:23:50 pm »

Katie, I'd be right there with you watching and breathing in those Heavenly Lights! What a wonder to experience!! hugs, Islandgirl

hepcme · « **Reply #153 on:** May 13, 2015, 12:40:59 pm »

Just listening and reading these reports has lifted me up...I may just go run a mile or two,, yeah right..but you all have really helped me today...I have been UNDIE since Jan. 30th and have gone through all of the sides that some and all have mentioned...we are the for runners of this drug and need to be more patient as I talk to myself...and I hope the FDA or some of the DOCs and professionals are reading these....I often thought I would make copies and send them to alot of gastros so they could understand but they are on a different grading scale LOL and won't listen anyway..
ps...I really liked the confirmation of the giddiness and energy on harvoni, I would laugh at anything sometimes in-apropriately LOL better to laugh than cry....did that too...brain fog is better - thoughts and memories come to the front...

WholeFoods · « **Reply #154 on:** May 13, 2015, 01:09:52 pm »

well said! At this point I feel like a lost boat in a storm with occassional sightings of other lost boats (you all!) Just waiting for the storm to subside and hanging on for all its worth. Geez, I cried yesterday just from stress!

Katie · « **Reply #155 on:** May 13, 2015, 01:24:20 pm »

Quote from: hepcme on May 13, 2015, 12:06:48 pm

Wow that is so cool, where do you live
I am getting too much sleep I think...I sleep until 8:30am...like the ol' days and asleep by 10:30pm....I just listen to the body and do what I think it needs...as I know ...this too shall pass ...it alllll comes to pass...guess that is good , I get bored easily...
Wow , what a story on your TX...hope you don't mind I shared it with another lady who I keep in touch with she got two extensions for 12,& 24 weeks...geno-1a 40yr HCV but not really high labs...she was scheduled for 8 weeks TX harvoni, still detected at 8 wk(210)... she is awating her 12 week lab by Friday...so I shared your story to help her exhaustion...the anticipation and hope is strenuous...thanks Katie
Anne

Hi Anne. Here are a couple recent articles for your friend and actually anyone. There have been a couple of us on this forum who were detected at the end and cleared by 12 weeks post treatment. One of these articles was just published around that time and I was so grateful to read it. It is quite amazing and shows if you have a very low VL at end of treatment you can still win the battle which is unlike previous treatments. My doctor wasn't even aware of this possibility!!

http://hepatitiscnewdrugs.blogspot.com/2015/03/hcv-rna-does-not-always-mean-treatment.html

http://www.hivandhepatitis.com/hcv-basic-science/5160-croi-2015-hcv-viral-load-and-speed-of-decline-do-not-predict-cure-with-interferon-free-therapy

I live in Alaska, but in the southern part, so we don't have the N.lights as frequently or intense as further north. That being said, when they are dancing you want to take advantage of it and enjoy!

Katie

Katie · « **Reply #156 on:** May 13, 2015, 01:36:08 pm »

Whole Foods....You are not lost at sea, you are on the Harvoni Train and we are all headed in the right direction! Do something good for yourself, drink lots of water and know your energy level and mental state will vary throughout treatment. Mine went from pure delight and joy to dark depression. Just remind yourself it's the treatment and it's easier to deal with.

Don't be frightened.

Katie

hepcme · « **Reply #157 on:** May 13, 2015, 01:45:46 pm »

Katie
Thanks so much for these reports..will forward links ot her and hope she remains positive...her labs should come in on Friday...
Times are sure changing and new findings are being found....'

WholeFoods · « **Reply #158 on:** May 14, 2015, 01:31:31 am »

Katie, I've been off treatment for a month and is why I started posting here and in this thread because I'm off and still continue to feel terrible. I actually felt better on treatment although it was a roller coaster. I just haven't had many good days at all since EOT. Sure glad to know others are feeling bad too, but I don't know what it means for us. Only time will tell I guess. It's kind of depressing.

Mike Conwell · « **Reply #159 on:** May 14, 2015, 06:54:11 am »

I've been off Harvoni for 4 weeks and 2 days and I feel terrible as well. I had 1 good week then crashed. We will see!!!! I'm getting blood work today. If I don't feel better soon I'll be in my Dr.

hepcme · « **Reply #160 on:** May 14, 2015, 09:17:24 am »

I am 13 week post TX .Harvoni, I am doing better all the time...I am somewhat fatigued and must be some depression back as I find it hard to get motivated but I do and that is a plus..before It just hurt to try...I am taking a multi vitamin with no iron and some minerals incl...plus milk thistle as I still have some left..I stay away from processed foods for the most part, no dairy, no meat, and brown grains...I do lemon water all the time and drink smoothies with protein powder and some spinach greens..mornings are slow and hard to get going...I don't...my days have been starting at 1pm and then I am good to go for the whole night till 10pm...I do have a chocolate problem...lol I love chocolate....Have a great day ...off to oatmeal and coffee

Bob V · « **Reply #161 on:** May 14, 2015, 11:28:08 am »

Not sure if I posted this on this thread, if so sorry. For me the first few weeks of Harvoni, 12wk tx, went fine then it hit me one day and I was tired the remaining weeks.

Two days post tx I felt like a new person. Reading some of the posts I guess I'm lucky. I'm 10 weeks post tx and all is well..except I have a cold

Katie · « **Reply #162 on:** May 14, 2015, 01:37:42 pm »

Quote from: WholeFoods on May 14, 2015, 01:31:31 am

Katie, I've been off treatment for a month and is why I started posting here and in this thread because I'm off and still continue to feel terrible. I actually felt better on treatment although it was a roller coaster. I just haven't had many good days at all since EOT. Sure glad to know others are feeling bad too, but I don't know what it means for us. Only time will tell I guess. It's kind of depressing.

Hi Whole Foods, I should have picked up on that...too many threads for me I guess.

I felt better with Harvoni too...sometimes too good...almost giddy! I am off treatment about 10 weeks now and like you have not felt good...not really bad but really tired and no motivation, like hepcme. Mornings are wasted, energy for a bit in the afternoon and to bed about 11:00.

However...the past two days I am doing much better! I planted my begonias and started my new project of building a nice book case! I actually ripped down some wood on the table saw and set up a router guide for shelf grooves. Three days ago I would never had attempted that as I wouldn't have felt safe operating the saw. So I am hopeful, I am getting back to where I want to be.

We just need to be patient and give ourselves the time to stabalize and heal!

Enjoy this wonderful day!

Katie

hepcme · « **Reply #163 on:** May 14, 2015, 01:53:37 pm »

Girl !!!! how do you know how to handle a saw like that , I just blew it on 45 angles for a frame..!!! whew you are good

Katie · « **Reply #164 on:** May 14, 2015, 02:18:10 pm »

Quote from: hepcme on May 14, 2015, 01:53:37 pm

Girl !!!! how do you know how to handle a saw like that , I just blew it on 45 angles for a frame..!!! whew you are good

Hahahaha...I really enjoy woodworking and have a better shop than most men, although many of my tools are well over 20 years old. I have a stiff knee so I had to hire someone to do the baseboards on my remodel and the carpenter told me to call him if I ever wanted to sell my tools! HA! It never fails, I have to go back and fix something I paid someone to do and found it is easier to do it the first time, rather than tearing out someone's mistake. I even did crown molding on rounded corners this winter. That was a first!

A hint: I always cut a practice piece on scrap wood to set up the saw and make sure it is right. I learned this lesson long ago.

Katie

suec · « **Reply #165 on:** May 14, 2015, 02:22:24 pm »

I just finished 12 wks of Harvoni May 5th and not feeling good either. My Doc said it was ok to now finish the last series of Hep A & B vaccine but I think I will wait a while. I was F4 on fibrosure test at beginning and think I should've done 24 wks of harvoni? I was undetected at wk 8 and 12. Doc said do blood work at 6mos EOT,,don't think I should wait that long. There are other treatments for non-responders to harvoni but will insurance pay? Any one feel bad after finishing harvoni and then started to feel better? How long did it take and what can help besides diet, no drink or smoke?

Katie · « **Reply #166 on:** May 14, 2015, 02:31:14 pm »

Suec: Just scroll up and read some posts. Many aren't feeling good since stopping and neither was I but at 10 weeks post I am starting to come back. I would talk to your doctor and get a test at 12 weeks post treatment. That is the normal time frame I believe and it is a significant one according to Gilead.

Good luck and I hope you feel better. Be good to yourself and listen to your body and Congratulations on your UNDETECTED status. That is wonderful news!

Katie

WholeFoods · « **Reply #167 on:** May 14, 2015, 07:04:27 pm »

Katie I can appreciate, wish I felt like participating more! Right now the questions are, of those who are SVR, how many felt bad at EOT. I also wonder how many on TX with little sides felt worse at EOT. So far a handful of folks have reported fatigue eases with time and stamina returns. I am now having muscle pain, so it seems like my sides are increasing. Woke up sweating last night. I have always had problems with medications and I realize we're all different and there's not a lot of data yet, but also wishing there were more post TX info available from the trials, something other than SVR and relapse rate. It is the most important info, but I'm finding it hard to not be a little nervous about it, although I am trying! A new thread for those who are SVR maybe? How they felt off and on TX?

hepcme · « **Reply #168 on:** May 14, 2015, 08:07:46 pm »

I too hired someone to put in a floor for my walk in shower and I am trying not to look at it....he put in the border around shower and it is terrible...I wish I had done it myself and now I have to look at it...try to be nice and give a guy who is down a break and I think he came high...oh lordy...I had to have someone break up the floor though for muscle and I was really sick then..didn't want to breath in that concrete dust...I ended up firing him....but woodwork...oh I can't measure..I am always off...I am impressed..girl way to go...

Katie · « **Reply #169 on:** May 14, 2015, 08:35:18 pm »

If your impressed with that, this ought to really get you:

I wired my own house, hooking up the electric breaker box, both 110 & 220 (a friend did drill through the studs and pull the wire for me)
I tiled my shower, bath tub, put in a wider tiled windowsill too!

I have a shelf full of how to books! <Big Smile>

Doing field research one becomes confident enough to try just about anything as if something needs to be built or fixed it is up to you. It's not rocket science! HA!

Katie

hepcme · « **Reply #170 on:** May 14, 2015, 09:03:47 pm »

How long a drive is it to AZ...

Islandgirl · « **Reply #171 on:** May 14, 2015, 10:31:47 pm »

Look up Amazing and Awesome and you'll find.... "Katie in Alaska, her gumption and shelf of how to books"!!!!!!! Katie, you're the best! Hugs, Islandgirl

hepcme · « **Reply #172 on:** May 14, 2015, 11:31:09 pm »

I know someone in Canada that is really sick with HCV ...she has applied for TX the govt. has approved it yet it still is not in her hands...the pharmacy or something is not getting the job done and it has been a month or so..she is cirrhotic now and stage 4, I can't believe they are hanging her out to wait so long...does anyone know of Canada's health system and can offer any suggestions...she is 3b..stage 4, ...just asking around for help for her...

Katie · « **Reply #173 on:** May 14, 2015, 11:59:59 pm »

There are a couple of folks on this forum from Canada. One from BC and one from back east. I am sure they will respond if they see your post.

hepcme · « **Reply #174 on:** May 15, 2015, 12:12:56 am »

thanks- - this girl is from On, Canada genot 3a , (correction not 3b) stage 4
cirrhotic liver. portal vein leaking into stomach..ODC and govt approved her she is waiting for meds , no response from ODC and they said for sure last WED./. nothing...I think TX is Solvadi/riba/inf

or is there even a TX for 3a's
YOUR THOUGHTS PLEASE
I asked her to go on another forum and get some advice , she hasn't yet and the forum she is on is not directive
any help I can share with her...thanks

Mugwump · « **Reply #175 on:** May 15, 2015, 04:12:36 am »

Quote from: hepcme on May 15, 2015, 12:12:56 am

thanks- - this girl is from On, Canada genot 3a , (correction not 3b) stage 4
cirrhotic liver. portal vein leaking into stomach..ODC and govt approved her she is waiting for meds , no response from ODC and they said for sure last WED./. nothing...I think TX is Solvadi/riba/inf or is there even a TX for 3a's
YOUR THOUGHTS PLEASE
I asked her to go on another forum and get some advice , she hasn't yet and the forum she is on is not directive
any help I can share with her...thanks

That is the recommended treatment for genotype 3. Ontario has very good medical centers, some of the best in Canada. London Ontario is well respected especially with regards to GI specialists, in fact quite often other provinces fly patients there.
It is very easy to lose focus with treatment for this disease and forget that it can take many years to develop to a level where there is cirrhosis. For me the waiting to go on meds has always been a royal PITA, but when you put it in perspective a few days or even weeks do not equate to much in the scheme of things.

Hope all goes well for your friend.

Eric

mario555 · « **Reply #176 on:** May 15, 2015, 07:19:13 am »

HepCme. I live out east in Canada. Out here, each province has its own set of rules and coverage for specific groups is/is not available. In New Brunswick, the government has just started covering Harvoni. They will cover people on welfare (need a special card) and prisoners. If you are not part of those two groups you are up sh.. creek!
I find this to be totally wrong. If you earn let say $60,000 you are left with $48,000 after tax. You live, drive a car, eat 3 meals a day and you're able to save $10,000 a year because you do those things frugally. This means I could afford Harvoni in 8-9 years! And I'm the one paying taxes to help those in financial needs. As a result, the government ''saves'' the indigent and lets the taxpayers die because of a lack of early treatment. I really think they have the recipe wrong!!!
As a result, you will not find any kind of help out here! Sorry!

JoeK9999 · « **Reply #177 on:** May 15, 2015, 09:27:55 am »

Just to add to this, I am 4 months post treatment. Was undetected at my 12 week after EOT test. Since ending treatment, my energy and stamina is down, I have to take naps in the afternoon because I am tired and I get a dizzy feeling almost everyday. I have been scuba diving for many years and am afraid to go diving with the dizzy feeling popping up. Hopefully all of these things will subside soon. I would think 4 months after treatment would have been enough time. I guess not.

Bob V · « **Reply #178 on:** May 15, 2015, 09:55:52 am »

Just to add to this, I am 4 months post treatment. Was undetected at my 12 week after EOT test. Since ending treatment, my energy and stamina is down, I have to take naps in the afternoon because I am tired and I get a dizzy feeling almost everyday. I have been scuba diving for many years and am afraid to go diving with the dizzy feeling popping up. Hopefully all of these things will subside soon. I would think 4 months after treatment would have been enough time. I guess not.
--------------------------------
Joe
Sorry and I would stay out of the water too, not worth the chance.

Good Luck Bob

CHepCFree · « **Reply #179 on:** May 15, 2015, 02:32:37 pm »

I am seeing folks expressing similar symptoms post treatment such as dizziness, angina, heart palpatations, full head, shortness of breath, ringing ears, etc. I personally do not believe these are other health issues but rather a result of Harvoni. I had no health issues other than Hep C, and felt good with that, prior to taking Harvoni. I have been off Harvoni almost 12 weeks now and feel worse now that I ever have with all the above symptoms. I have been reading about drugs damaging the vascular system and that seems to make sense ere based on this list of physical issues that are now presenting. For those who breezed through the treatment and are cured, I am happy. Personally, I am not sure I would have taken the treatment had I known I'd be in this shape post treatment. I don't know if I'm cured or not at this point, but was not looking to be less healthy post treatment. Please be sure to report your symptoms to the FDA and Gilead.

mario555 · « **Reply #180 on:** May 15, 2015, 02:56:45 pm »

I did 24 weeks treatment and am now 2 weeks EOT. I do have most of the symptoms described but they appear to be diminishing. I would think I will need 8 weeks easily to get back to my pre-treatment state. I too had a pretty good health before starting treatment. I would advise you to be patient. It's a drag but there is little else to do...
BobV. I also am a diver and now that you mention it, I too wouldn't go diving. The dizziness seems to happen when I do specific motions of my head. As an example, if I talk to my wife laying on my side and then turn around to get water, it happens most times. I tried to "force" dizziness consciously but it doesn't work. Being in a dive could make you experience the turning motion and....
We rushed into this treatment for different reasons (I had no choice), this is a new product so the real Guinea pigs are us! On the other hand, anything was better than Inf-riba!! I am still paying physically for those 2 failed attempts!

Bob V · « **Reply #181 on:** May 15, 2015, 02:57:55 pm »

Please be sure to report your symptoms to the FDA and Gilead.
-----
ChepCFree
First sorry about how you're feeing post TX. Good point on the reporting but not sure how to do this...or if they really care.

Bob V · « **Reply #182 on:** May 15, 2015, 03:07:43 pm »

We rushed into this treatment for different reasons (I had no choice), this is a new product so the real Guinea pigs are us! On the other hand, anything was better than Inf-riba!! I am still paying physically for those 2 failed attem
-----------
Yup, I did the original Inf tx x2 in the 90's. It was horrible for me, far worse the other people I knew who on it. I also think that "maybe" UC which I didn't have Pre Inf was a side effect. My doc says no but I've read several article about it.

Yes I agree we're all Guinea pigs with this.

Bob

Katie · « **Reply #183 on:** May 15, 2015, 03:15:56 pm »

Report it to your doctors too as I know they need to inform H&SS on infectious diseases so they may have to file follow ups on treatments as well. I will ask about this the end of June, when I go in.

The past three days I am feeling better but my endurance is still short lived. I too experienced sever vertigo, where I would have fallen on my face, but fortunately had support nearby. This was much more than dizziness. I was fortunate as it only lasted about 3 days and haven't experienced it since. I have had tinnitus for years, which started before I was diagnosed, so I am not sure it was from Hep C as many people experience it who are not infected. It would be such a blessing to have it disappear, and it did for 2 days on treatment and one day post treatment, so who knows. I do miss the sounds of silence.

It would be cool if we could post a spreadsheet where we could update our own side effects to have available to print off and give to our doctors so they know it is affecting many real time people. That is probably not possible on the forum though. Any of you computer whizzes know about that? I am great with Excel but not this format.

Enjoy your day and do something nice for yourself.

Katie

Bob V · « **Reply #184 on:** May 15, 2015, 03:25:06 pm »

Katie
I told my doc about my brief episode of hypertension and tachycardia. His responce was most HepC patient on Harvoni aren't endurance athletes, He thinks it's that. But I've never had an issue before being on Harvoni. Bottle line he felt it was just me...and I did tell him about all the post on this forum with this issue.

Katie · « **Reply #185 on:** May 15, 2015, 04:07:08 pm »

I know we are all hearing that and we heard the same thing about the side effects while on treatment. That's why I thought a printout of a spreadsheet might actually get their attention since it isn't just a couple but just about EVERYBODY!. Wishful thinking I guess. I will still ask about if they report on treatments for infectious diseases, though. My doctor is used to me with my questions and he does listen as I have given him good information in the past.

CHepCFree · « **Reply #186 on:** May 15, 2015, 08:39:29 pm »

I would gladly put together a spreadsheet. I love spreadsheet. This is not good that many of us are experiencing problems. If folks want, I can volunteer and can provide my personal e-mail so I can have you send the info there for ease sake. I would post results at different intervals so folks could see. I would also share with my doc and Gilead. Interestingly my doc said oh....it is probably anxiety. No, not!

Bob V · « **Reply #187 on:** May 15, 2015, 09:09:07 pm »

Interestingly my doc said oh....it is probably anxiety. No, not!
-----
That's about how it goes with me.

Katie · « **Reply #188 on:** May 15, 2015, 09:46:25 pm »

Quote from: CHepCFree on May 15, 2015, 08:39:29 pm

I would gladly put together a spreadsheet. I love spreadsheet. This is not good that many of us are experiencing problems. If folks want, I can volunteer and can provide my personal e-mail so I can have you send the info there for ease sake. I would post results at different intervals so folks could see. I would also share with my doc and Gilead. Interestingly my doc said oh....it is probably anxiety. No, not!

That might be quite the undertaking CHepC, I was thinking it would be awesome if it could be attached somehow where people could update it with their own info, but I am sure that isn't even reasonable. It seems that more accurate info would be obtained if they just had to check off what they were experiencing as it is so easy to forget to mention the short lived or rather minor issues. I love spreadsheets too. It would also be interesting to see if there are issues experienced before, during and/or after treatment and how long they lasted. Ya, I know, I am pushing it with too many specifics, but that is just my background.

Whatever you decide, I fully support it and your offer is wonderful! Thank you!

Katie

hepcme · « **Reply #189 on:** May 15, 2015, 10:09:55 pm »

well, I am resting waiting for my heart to stop fluttering around , seems to have been noticeably irregular all day ..I have had more sugar than usual as I tend to do that when I substiitute at High School chillins...they are a stresser..May have to think of a career change LOL..nice job though can work when I feel good and vise versa.....this is kidna scarey today...didn't know there was a name for it so I looked up tachycardia ..time will tell..all I know is. ... I had no choice I was a gonner either way and the other way , HCV, was a long long slow way to go and maybe this will be faster and I can at least enjoy every day I have and ...I DO

Tachycardia is caused by something that disrupts the normal electrical impulses that control the rate of your heart's pumping action. Many things can cause or contribute to problems with the heart's electrical system. These factors include:

Damage to heart tissues from heart disease
Abnormal electrical pathways in the heart present at birth (congenital)
Disease or congenital abnormality of the heart
Anemia
Exercise
Sudden stress, such as fright
High blood pressure
Smoking
Fever
Drinking too much alcohol
Drinking too many caffeinated beverages
Medication side effects
Abuse of recreational drugs, such as cocaine
Imbalance of electrolytes, mineral-related substances necessary for conducting electrical impulses
Overactive thyroid (hyperthyroidism)

Katie · « **Reply #190 on:** May 15, 2015, 10:22:02 pm »

Hepcme: I had to give up caffeine due to that and haven't had it since. I still eat chocolate but no caffeinated drinks. I know thyroid issues really affects it in a very scary way. A friend of mine has that issue on and off and usually needs her medication altered. Hope you feel better.

You have really been having some difficulties. Sorry!

Katie

Opps..I guess you have actually been doing pretty good. Confused you with someone else, I guess. Anyway....feel better.

hepcme · « **Reply #191 on:** May 15, 2015, 10:36:03 pm »

Oh thanks I knew there was something else I wanted the PCP to check at the end of the month...thyroid..I did have a little drop in thyroid ..hypothyroidism..not much though....I have one cup a coffee in AM.. no caffeine drinks ...water and aloe jc ...hmmpf

Mugwump · « **Reply #192 on:** May 16, 2015, 01:18:56 am »

Quote from: Katie on May 15, 2015, 09:46:25 pm

That might be quite the undertaking CHepC, I was thinking it would be awesome if it could be attached somehow where people could update it with their own info, but I am sure that isn't even reasonable. It seems that more accurate info would be obtained if they just had to check off what they were experiencing as it is so easy to forget to mention the short lived or rather minor issues. I love spreadsheets too. It would also be interesting to see if there are issues experienced before, during and/or after treatment and how long they lasted. Ya, I know, I am pushing it with too many specifics, but that is just my background.

Whatever you decide, I fully support it and your offer is wonderful! Thank you!

Katie

Unfortunately this is BB software Katie it will not support editing in groups, nor will the fields of a spread sheet layout work. You can insert a standard HTML table like this and collate others info though but it will work best if the one who starts the table does the editing because group editing is not possible except by moderators who have higher editing privileges.

Something like this is what you would get;

enter your data
next entry
and so forth

as you can see it just spaces it for other table entries and you would need to tabulate every entry not the same as entering in data in a spread sheet and with no math attached to update stats.

That said HTML and javascript editing gives me a <HEAD_ACHE> and is a royal pita to say the least when it comes to math functions so most Bulletin Board software does not include the math library functions to do javascripting functions or linear editing of table box outlines for that matter. What you would need is online software like what Google uses in Google docs or heavens forbid some other concoction of web interfaces that cause all sorts of user problems.

It is fairly easy to cut and past(e) typed script on BB software though so that is the best route for what you have in mind.

Regards Eric

mario555 · « **Reply #193 on:** May 16, 2015, 07:26:56 pm »

In the "After treatment section" there is one main subject where it requests your results. Although it has to be updated regularly, new evidence (from us) showed a 75 % cure rate. Biggest difference was with 8 weeks treatments being sub-optimal.
This information is crucial for people about to start treatment and still on treatment. Please make sure to post your results as they become known..

CHepCFree · « **Reply #194 on:** May 16, 2015, 09:39:26 pm »

There was a question how to report side effects to FDA. You can go directly to the FDA website and there is a link to fill out a form to report your sides. Although they ask about Adverse Effects, because this is a new drug, I believe every side effect should be considered adverse.

websitehttp://www.fda.gov/Drugs/GuidanceComplianceRegulatoryInformation/Surveillance/AdverseDrugEffects/

Bob V · « **Reply #195 on:** May 16, 2015, 10:08:56 pm »

In the "After treatment section" there is one main subject where it requests your results. Although it has to be updated regularly, new evidence (from us) showed a 75 % cure rate. Biggest difference was with 8 weeks treatments being sub-optimal.
This information is crucial for people about to start treatment and still on treatment. Please make sure to post your results as they become known..
-----------
Yup!

hepcme · « **Reply #196 on:** May 17, 2015, 04:14:05 pm »

Having long waves of heart flutters...hmmmm...thinking more on that Thyroid thought but also read about Arrythmia due to lack of magnesium so I am going to go get some magnesium...that would be a quick fix...some have claimed heart regulates in matter of hours...I like it...still think it has to do with Harv...expecially if they came out with the warning: IF you are on heart meds do not take HARVONI ...and didn't a girl pass away from this issue on heart meds before PHARMA discovered this issue..

hepcme · « **Reply #197 on:** May 17, 2015, 04:27:28 pm »

Finished my back patio...painted all the trim and cut a door , made a dog door framed it out and painted it now have to hang it -then paint the french doors then off to the front to put in pavers and plants...so nice to be back but afraid to over work with this heart fluttering in and out ...what the heck ??
Had to cover a secret hole pass thru from kitchen in my bedroom closet?? dont'know what that was about but sealed , mudded, textured and painted the closet...looks grand...don't know if I am going to sell...I have a bucket list .. :}

Mugwump · « **Reply #198 on:** May 17, 2015, 05:04:38 pm »

Quote from: hepcme on May 17, 2015, 04:14:05 pm

Having long waves of heart flutters...hmmmm...thinking more on that Thyroid thought but also read about Arrhythmia due to lack of magnesium so I am going to go get some magnesium...that would be a quick fix...some have claimed heart regulates in matter of hours...I like it...still think it has to do with Harv...especially if they came out with the warning: IF you are on heart meds do not take HARVONI ...and didn't a girl pass away from this issue on heart meds before PHARMA discovered this issue..

To be specific, the reaction happens with the heart medication amiodarone . This is the only known fatal adverse reaction found to date.

Be very careful with supplements, especially magnesium, calcium and potassium. We have discussed the possibility of having the levels of electrolytes go out of balance because of increased renal functions while on Harvoni. I carefully took a low dose supplement and it seemed to help somewhat. This was after about 14 weeks of treatment when I started to lose energy and had slight heart palpitation.

I am on permanent thyroid hormone and have not had to alter the dose as my TSH readings have stayed in the normal range during treatment.

I am surprised that there is no follow up on the possibility of reduced electrolyte associated with how harvoni effects the renal system. Harvoni is not a viable treatment for those who are on dialysis so you would think that this fact is a hint that renal functions will be effected during the course of treatment.

Perhaps if enough of us speak to our GIs and explain that others have had exactly the same problems during treatment they might get the hint to monitor for changes to electrolytes in some individuals! Especially those of us with cirrhosis and a longer duration treatment.

dragonslayer · « **Reply #199 on:** May 17, 2015, 05:15:30 pm »

Lets remember that those who post in threads like these are not a representative sample... The posters post here because they are having side effects.. So if any attempt is made to correlate the data, there should clearly an entry for those who experience either no sides, or just the most common, eg, occasional headache or fatigue.

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