Welcome, Guest. Please login or register.
April 15, 2024, 05:59:56 am

Login with username, password and session length


Members
  • Total Members: 6307
  • Latest: golfer
Stats
  • Total Posts: 55125
  • Total Topics: 4851
  • Online Today: 52
  • Online Ever: 1314
  • (June 22, 2016, 05:23:42 am)
Users Online
Users: 0
Guests: 25
Total: 25

Welcome

Welcome to the Hep Forums, a round-the-clock discussion area for people who have Fatty Liver Disease, Hepatitis B, C or a co-infection, their friends and family and others with questions about hepatitis and liver health. Check in frequently to read what others have to say, post your comments, and hopefully learn more about how you can reach your own health goals.

Privacy Warning: Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.
  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.
  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.
  • Product advertisement (including links); banners; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from the Hep Forum Moderators.
Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: Rejected, approved, starting Harvoni tomorrow!  (Read 31188 times)

0 Members and 1 Guest are viewing this topic.

Offline opaleye

  • Member
  • Posts: 67
Rejected, approved, starting Harvoni tomorrow!
« on: March 04, 2015, 11:12:26 pm »
Thank goodness for this community! I found out less than a week ago that I am approved for Harvoni and I am full of questions, and a little bit of anxiety.

Here's my rollercoaster story:

After battling the dragon for over three decades, in November of 2014 my Harvoni Rx was rejected by Express Scripts because I was too healthy--Fibrosure F1-2 and VL < 3 Million. What?! For a moment I thought about stopping all my liver and immune support supplements an maybe having a glass or two of wine so I would be sick enough to be cured. Thank goodness that train of thought didn't last long.

Then in January 2015, my insurance company switched to CVS CareMark. It took a month of waiting, but once I was approved they called me on a Friday and the medicine arrived the next Monday! Tomorrow I see my hepatologist's NP to talk about the treatment, sign forms, and talk about labs. I plan on getting started right, as soon as I get home for lunch.

I'm usually very sensitive to drugs so I'm a bit anxious about side effects. I mean, chronic headaches, insomnia, and occasional brain fog is the norm for me. Will it get worse? Is it a different kind of headache? My work involves both analytical analysis and interacting with people. Will I be able to do my job? Will I have to take FMLA?

On the other hand, I've been a health food nut for most of my life and I believe that is what has kept the dragon somewhat subdued all these years. I have read all the advice on drinking lots and lots of water. Will do!

Thanks so much for sharing this journey with me!
« Last Edit: March 05, 2015, 10:45:40 am by opaleye »
1982 Dx Non-A Non-B infection
1998 Dx HVC genotype 1a; VL < 1 Million; Liver Biopsy F0 A0
2006 Liver Biopsy F1 A1
2015 Harvoni Tx 8 wks: 15 wks post-EOT: VL ~670,000 -- Relapsed
2018 Mavyret Tx 16 wks: VL 90 at 12 wks, dr stopped Tx per VL detected, severe fatigue, dizziness (a month later got pacemaker for bradycardia)
2021 Liver biopsy: No fibrosis
2023-12-14 Started Vosevi: Hemocrit 48.8, platlets 133, ALP 141, AST 91, ALT 75, VL 1824750
2024-03-14 EOT Not Detected!

Offline cj

  • Member
  • Posts: 24
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #1 on: March 05, 2015, 12:08:01 am »
Hello opaleye the side effects are not to bad ..headache at first pretty mild a Tylenol will help if needed ...within a couple of weeks brain fog gone and started getting lots of energy and im like you sensitive to meds I started 12 wks on Jan 14th so day 50 here ..last few weeks been having body aches sometimes really sore but today not as bad ...you should be able to work with no problems this new medicine is something else ...miracle drug...been reading alot of people taking it with no problems ....congratulations on getting treatment. ...thats my life now to drinking water water wate good luck to you cj

Offline Ruthie

  • Member
  • Posts: 105
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #2 on: March 05, 2015, 12:48:32 am »
Unfortunately, only time will tell if you have bad side effects. I, too, am prone to side effects. And I'm having some really bad ones from the Harvoni. I had to step-down from my PTA positions. However, I'm not the norm. Most people have very few problems. If you do have bad side effects, talk to your Dr about meds or other things you can do to help. Good luck, I'm crossing my fingers for you!

Offline beflat10r

  • Member
  • Posts: 21
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #3 on: March 05, 2015, 12:51:07 am »
Congratulations Opaleye! So far so good at 6 days here. The cost totally approved and covered here too.
 No side effects. Not expecting any. I feel very expensive @ $6750 in pills after 6 days- that's the only side effect so far. And grateful and lucky too. Excited to eradicate this virus.
Yes... lots and lots of water.
Good luck,
have fun!!
Clean and sober 6/19/89
dx gt 1a 5/2000 bummer!
No treatment
Monitored via ultrasounds and bloodwork and great liver doc for last 15yrs
Totally covered for Harvoni
Started Harvoni 2/27/15
Viral load 1,476,109
Feel like I hit the lottery!

Offline opaleye

  • Member
  • Posts: 67
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #4 on: March 05, 2015, 10:44:43 am »
I saw my hepatologist's nurse this morning and just now took my first Harvoni pill!!! She said of the 12 patients they have not one has complained of side effects past the first few weeks. One patient had a VL of 16 M and was undetectable in 4 weeks. I am feeling very confident of slaying this dragon!

Since I got copies of my recent lab work I've added those details to my signature. I have the next four days off from week to ease into the treatment. Interesting that the pharmacy nurse suggested at least 64 oz of water a day, just like I've seen recommended in this community's posts.

Thanks for all the feedback and encouragement  :)
1982 Dx Non-A Non-B infection
1998 Dx HVC genotype 1a; VL < 1 Million; Liver Biopsy F0 A0
2006 Liver Biopsy F1 A1
2015 Harvoni Tx 8 wks: 15 wks post-EOT: VL ~670,000 -- Relapsed
2018 Mavyret Tx 16 wks: VL 90 at 12 wks, dr stopped Tx per VL detected, severe fatigue, dizziness (a month later got pacemaker for bradycardia)
2021 Liver biopsy: No fibrosis
2023-12-14 Started Vosevi: Hemocrit 48.8, platlets 133, ALP 141, AST 91, ALT 75, VL 1824750
2024-03-14 EOT Not Detected!

Offline Ruthie

  • Member
  • Posts: 105
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #5 on: March 05, 2015, 10:47:46 pm »
Just wanted to let you know that I found out today my viral load is already undetectable. It's been Hell for me on the treatment, but it's worth it.

How are you feeling after your first dose?

Offline cj

  • Member
  • Posts: 24
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #6 on: March 06, 2015, 12:18:16 am »
ruthie what side effects are you having,, hope it gets better for you ,, cj

Offline Ruthie

  • Member
  • Posts: 105
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #7 on: March 06, 2015, 12:52:44 am »
Hey, cj, my side effects are:

Past-kidney pain and headaches, both better with water

Better-sores on tongue and throat

Current-fatigue, nausea, diarrhea, vivid dreams, hair texture changes, anxiety, sever mood changes, and upper right abdominal pain

Most of my side effects are from the Sovaldi. I've been in constant contact with Gilead, the pharmacy, and my Drs.

The treatment hasn't been fun, but the news today has made it worth it. I figure this is how chemotherapy patients must feel, and now I can have better empathy for them.

Even with the Hell I've gone through, I'd still recommend the drug.





Offline Long_Haul

  • Member
  • Posts: 161
  • Slayed the Dragon
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #8 on: March 06, 2015, 09:21:27 am »
@Ruthie, Congratulations on being Undetected, I'm doing a little happy dance as I type. Great news. Hang in there and you will get there. I am in week 10 with about 20 days to go on Harvoni/Ribavirin combo and am felling a bit fatigues at this point. We all do what we need to do get through whatever treatment we get handed. We will all get there, keep the faith. Rest when you can and keep going until the finish.

Best Wishes and I hope your sides get better soon,

AL
Genotype 1A

Diagnosed 1989
Biopsy-cirrhosis stage 4 2000, no starting VL this round

3 rounds of Int+Rib
(Combo/48wks,Peg/26 Wks,Triple with Incivek/16wks)
UND with Incivek, Relapsed
Started 12 weeks Harvoni and Rib Jan 2nd,2015
4 weeks Undetected
8 weeks Undetected!
EOT at 12 weeks Undetected
EOT at 24 weeks STILL UNDETECTED
Completed TX Mar 26th,2015

EOT plus 4 weeks UNDETECTED
EOT plus 12 weeks UNDETECTED !!!!!!!!!!! I am DONE!

NO LONGER a member of the "WAITING GANG"

Offline opaleye

  • Member
  • Posts: 67
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #9 on: March 06, 2015, 01:57:41 pm »
Two pills down, 54 to go!

So far, so good. The sides have been manageable, at least for someone staying home from work.

Yesterday, after the first pill, I could definitely tell I had taken a strong medicine-- Shaky, chills, neurological zaps in my back, brain fog, hearing diminished and vision fuzzy, not the usual headache, tinnitus, and fatigue, and then in the evening a bout of 'intestinal distress'. But aside from the dull headache and the hearing/vision issues, none of those symptoms stayed long.

This morning, I felt great! I can do this! Minor 'intestinal distress' but other than that, better than ever. Then the Solvaldi kicked in about 4 hours after dosing and I began to feel my temples tighten and buzz. Water, water, water, water.

@Ruthie: Congrats on being undetected! Soon that dragon will be slain and those nasty sides will vanish!

Thanks to all for sharing your stories!
1982 Dx Non-A Non-B infection
1998 Dx HVC genotype 1a; VL < 1 Million; Liver Biopsy F0 A0
2006 Liver Biopsy F1 A1
2015 Harvoni Tx 8 wks: 15 wks post-EOT: VL ~670,000 -- Relapsed
2018 Mavyret Tx 16 wks: VL 90 at 12 wks, dr stopped Tx per VL detected, severe fatigue, dizziness (a month later got pacemaker for bradycardia)
2021 Liver biopsy: No fibrosis
2023-12-14 Started Vosevi: Hemocrit 48.8, platlets 133, ALP 141, AST 91, ALT 75, VL 1824750
2024-03-14 EOT Not Detected!

Offline skycatcher

  • Member
  • Posts: 64
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #10 on: March 06, 2015, 07:05:49 pm »
Hi Opaleye! I just started my Harvoni Treatment 03/05 Thursday.

This is what I have been doing and at day two everything is great.
First thing I do with waking up is drink a glass of water prior to taking my very lovely Magic Pill. Take the pill and fix a piece of toast and eat that . Then more water.  I love coffee so then I fix my coffee and enjoy that. After that cup of coffee I drink more water - enough to off set the coffee. It sounds like a lot of water and maybe it is but I have nothing in the way of side effects to mention.

I think hydrating first thing is key.  I will keep posting and let you know how things are going.
    ~    Skycatcher

Offline opaleye

  • Member
  • Posts: 67
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #11 on: March 06, 2015, 07:23:25 pm »
Hi Skycatcher!

Thanks for sharing your advice to hydrate first thing. I've been good about drinking plenty throughout the day (over 100 oz), but sounds like hydrating first is the key. 

Today is/was so much better than yesterday. About 4 hours after dosing I felt anxious and just weird for about 2-3 hours, then it subsided. Still have a bit of the dull headache, but I have chronic headaches anyway so I can deal with that. As for other side effects, I forgot to mention a metallic taste. Yesterday I drank bottled spring water and today filtered water, so I don't think it's the water.

I have go back to work full time on Monday, so I'm thinking if the worse part is 4 hours after then I might take the Magic Pill an hour later each day until hitting 2 PM.

This is great having someone who started on the same day to swap notes with. I love my coffee, too. Organic, light roast, French press with almond milk. It's what gets me up in the morning.

Thanks for posting!
1982 Dx Non-A Non-B infection
1998 Dx HVC genotype 1a; VL < 1 Million; Liver Biopsy F0 A0
2006 Liver Biopsy F1 A1
2015 Harvoni Tx 8 wks: 15 wks post-EOT: VL ~670,000 -- Relapsed
2018 Mavyret Tx 16 wks: VL 90 at 12 wks, dr stopped Tx per VL detected, severe fatigue, dizziness (a month later got pacemaker for bradycardia)
2021 Liver biopsy: No fibrosis
2023-12-14 Started Vosevi: Hemocrit 48.8, platlets 133, ALP 141, AST 91, ALT 75, VL 1824750
2024-03-14 EOT Not Detected!

Offline opaleye

  • Member
  • Posts: 67
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #12 on: March 08, 2015, 01:51:22 pm »
Took my fourth pill a few hours ago. Feeling pretty normal today, but yesterday...

I woke up with killer headache that totally shut me down, with nausea so bad I couldn't even keep water down. Tylenol didn't even touch it. After staying in bed well into the evening I finally got some relief from the headache after taking a migraine medicine (a triptan) that dissolves under the tongue. I had taken a regular tablet of the same medicine earlier in the day but since I couldn't keep anything down I didn't know if any of it actually got into my system.

Today, I feel fine. A little tired, a little spacey, but no nausea or headache. Gosh, I might even attempt going into work tomorrow!

@Skycatcher -- How have you been feeling?
1982 Dx Non-A Non-B infection
1998 Dx HVC genotype 1a; VL < 1 Million; Liver Biopsy F0 A0
2006 Liver Biopsy F1 A1
2015 Harvoni Tx 8 wks: 15 wks post-EOT: VL ~670,000 -- Relapsed
2018 Mavyret Tx 16 wks: VL 90 at 12 wks, dr stopped Tx per VL detected, severe fatigue, dizziness (a month later got pacemaker for bradycardia)
2021 Liver biopsy: No fibrosis
2023-12-14 Started Vosevi: Hemocrit 48.8, platlets 133, ALP 141, AST 91, ALT 75, VL 1824750
2024-03-14 EOT Not Detected!

Offline Ruthie

  • Member
  • Posts: 105
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #13 on: March 08, 2015, 02:04:29 pm »
Hey, opaleye, do you think it was a bad migraine or side effects? I'm glad you're feeling better today and hope you can go to work tomorrow!

Something odd I've noticed with myself-I've had a couple really bad headaches like that on Harvoni but no migraines. Let's pray I didn't just jinx myself LOL

Hope the rest of your day is good!

Offline beflat10r

  • Member
  • Posts: 21
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #14 on: March 08, 2015, 02:05:43 pm »
@ opaleye- Man that's a drag the side effects you're experiencing. Sorry to hear that.
No discernible side effects on pill #10.
I wonder why the side effects vary so much.
I hope it subsides for you.
Clean and sober 6/19/89
dx gt 1a 5/2000 bummer!
No treatment
Monitored via ultrasounds and bloodwork and great liver doc for last 15yrs
Totally covered for Harvoni
Started Harvoni 2/27/15
Viral load 1,476,109
Feel like I hit the lottery!

Offline skycatcher

  • Member
  • Posts: 64
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #15 on: March 09, 2015, 04:00:40 pm »
Hi Opaleye!
Drag about the migraines... they can be their own beast.  Knock on wood but I don't suffer from them. I understand that vasoconstriction is a big part of migraines and the meds and or caffeine can do wonders (sometimes).
The only "headache like" difference I am noticing is an awareness of my frontal forehead and some of the sinus areas.  It is like the precursor of where a headache may form but as soon as I get this "announcement"  -- which is like a silent whisper -- then I immediately have more water or juice. So far at day 5 no headache.  Usually I experience headaches with big fronts coming through and we have had a few of those.
I have noticed the "brain fog" more in the first part of the day but that is starting to improve greatly it seems with each day.  My fuzzy time is decreasing also with each changing day.  It would be very disconcerting to be leading a meeting with the lack of focus I was experiencing so I feel for you.  Saturday I was out and about and conversing with some folk and I swear it seems that I could follow the first part of what they were saying but it is as though the conversation just went blurry. Very unusual for me.
One of the credos I find useful is  " fake it till you make it ... " perhaps this could be useful now. ;)

     ~   Skycatcher

Offline opaleye

  • Member
  • Posts: 67
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #16 on: March 09, 2015, 06:36:32 pm »
Hey, opaleye, do you think it was a bad migraine or side effects? I'm glad you're feeling better today and hope you can go to work tomorrow!

Something odd I've noticed with myself-I've had a couple really bad headaches like that on Harvoni but no migraines. Let's pray I didn't just jinx myself LOL

Hope the rest of your day is good!

Hi Ruthie!

I think it may have been a combination of both -- a migraine made worse by the side effects. I have only gotten nausea with vomiting a couple times before with migraines and never for an entire day!

Hope your day was jinx-free!
1982 Dx Non-A Non-B infection
1998 Dx HVC genotype 1a; VL < 1 Million; Liver Biopsy F0 A0
2006 Liver Biopsy F1 A1
2015 Harvoni Tx 8 wks: 15 wks post-EOT: VL ~670,000 -- Relapsed
2018 Mavyret Tx 16 wks: VL 90 at 12 wks, dr stopped Tx per VL detected, severe fatigue, dizziness (a month later got pacemaker for bradycardia)
2021 Liver biopsy: No fibrosis
2023-12-14 Started Vosevi: Hemocrit 48.8, platlets 133, ALP 141, AST 91, ALT 75, VL 1824750
2024-03-14 EOT Not Detected!

Offline opaleye

  • Member
  • Posts: 67
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #17 on: March 09, 2015, 06:37:33 pm »
@ opaleye- Man that's a drag the side effects you're experiencing. Sorry to hear that.
No discernible side effects on pill #10.
I wonder why the side effects vary so much.
I hope it subsides for you.

So glad you are one of the SE-free!
1982 Dx Non-A Non-B infection
1998 Dx HVC genotype 1a; VL < 1 Million; Liver Biopsy F0 A0
2006 Liver Biopsy F1 A1
2015 Harvoni Tx 8 wks: 15 wks post-EOT: VL ~670,000 -- Relapsed
2018 Mavyret Tx 16 wks: VL 90 at 12 wks, dr stopped Tx per VL detected, severe fatigue, dizziness (a month later got pacemaker for bradycardia)
2021 Liver biopsy: No fibrosis
2023-12-14 Started Vosevi: Hemocrit 48.8, platlets 133, ALP 141, AST 91, ALT 75, VL 1824750
2024-03-14 EOT Not Detected!

Offline opaleye

  • Member
  • Posts: 67
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #18 on: March 09, 2015, 07:05:16 pm »
@Skycatcher!

Thanks for the reminder about water, water, water, water. I was really good the first two days drinking over 100 oz then the third day I couldn't keep anything down. No excuses for the last two days, but at least I'm drinking more than usual, about 60 oz.

One of the credos I find useful is  " fake it till you make it ... " perhaps this could be useful now. ;)
     ~   Skycatcher

I love it! That's pretty much what I told my boss today. I'm just fine working quietly in my office focusing on one thing, but the idea of being a bright room full of people I have to converse with intelligently made me nervous. (I'm a people-person so that's usually not an issue!) Thankfully today I was able to beg off a meeting with potential hire. I figure if I can get through this first week the rest should be smooth sailing.

I know what you mean about the brain fog making one fuzzy and blurry. I'm okay following someone in the moment but then, uh, what did you just say? I did feel better as the day went on. I'm still trying to get a feel for how each of the two drugs affect me. From what I understand, the ledipasvir gets into your system in about an hour, but the sofobuvir takes about four hours. So far, it seems that the ledipasvir makes me spacey and the sofobuvir gives me the dull headache. Ruth said that was the drug that was causing most of the problems for her. Can you tell a difference?

~Opaleye
1982 Dx Non-A Non-B infection
1998 Dx HVC genotype 1a; VL < 1 Million; Liver Biopsy F0 A0
2006 Liver Biopsy F1 A1
2015 Harvoni Tx 8 wks: 15 wks post-EOT: VL ~670,000 -- Relapsed
2018 Mavyret Tx 16 wks: VL 90 at 12 wks, dr stopped Tx per VL detected, severe fatigue, dizziness (a month later got pacemaker for bradycardia)
2021 Liver biopsy: No fibrosis
2023-12-14 Started Vosevi: Hemocrit 48.8, platlets 133, ALP 141, AST 91, ALT 75, VL 1824750
2024-03-14 EOT Not Detected!

Offline Ruthie

  • Member
  • Posts: 105
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #19 on: March 09, 2015, 07:06:41 pm »
Hi Ruthie!

I think it may have been a combination of both -- a migraine made worse by the side effects. I have only gotten nausea with vomiting a couple times before with migraines and never for an entire day!

Hope your day was jinx-free!

A combo of the two makes sense, but still sucks  :'(  Glad you hadsome migraine meds for it!

So far, jinx free :D I have a little headache, but it's just a normal Harvoni one.


Offline skycatcher

  • Member
  • Posts: 64
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #20 on: March 10, 2015, 12:45:15 am »
Hi Opaleye -- no I can't tell any difference between the two meds but I have great faith that the geniuses that create these medications got it ironed out. I think the human body has a great ability to adapt and change and because we are all so uniquely individual that is why I think some will have more side effects then others. Every "body" is unique and can respond somewhat differently. Individual bio meds are just around the corner just not here yet.
I am drinking around 100 oz. water and then also have juice to stay hydrated throughout the day. To start my day off right I have a bottle of water right on my nightstand so that when I first wake there is my water and med.  Drink the water.  take the med. Coffee/ water, etc. I think mainly it is being hydrated -- as if the med needs the water -- or the body needs the constant hydration.
   ~   Skycatcher

Offline opaleye

  • Member
  • Posts: 67
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #21 on: March 16, 2015, 07:39:00 pm »
Hi Skycatcher!

How are have you been feeling going into the second week now?

Every day is different for me. I'm still having side effects, most of which are manageable, but the headaches not so much. I filed for intermittent FMLA today in case I need to take a few hours or a day off. Everyone in my workplace has been very supportive.

These temporary discomforts are well worth the outcome!
1982 Dx Non-A Non-B infection
1998 Dx HVC genotype 1a; VL < 1 Million; Liver Biopsy F0 A0
2006 Liver Biopsy F1 A1
2015 Harvoni Tx 8 wks: 15 wks post-EOT: VL ~670,000 -- Relapsed
2018 Mavyret Tx 16 wks: VL 90 at 12 wks, dr stopped Tx per VL detected, severe fatigue, dizziness (a month later got pacemaker for bradycardia)
2021 Liver biopsy: No fibrosis
2023-12-14 Started Vosevi: Hemocrit 48.8, platlets 133, ALP 141, AST 91, ALT 75, VL 1824750
2024-03-14 EOT Not Detected!

Offline skycatcher

  • Member
  • Posts: 64
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #22 on: March 16, 2015, 10:26:36 pm »
Hi Opaleye!
All things considered pretty good.  I don't work outside of the home so the good news is if I'm a little more tired I can adjust what I am doing.  So the other day I started working  on my garage and did to-o-o much. So the next day I was wiped out and just didn't do anything at all. For me it's always been the exhaustion that has kicked me. That's actually how I found out  I had HCV -- in 1993. 

So as far as Harvoni is going it seems the exhaustion is a little different.  Probably a little greater. But it is spring and I do have allergies to things that bloom and that can slow me down too. The other funny things that have been happening are very local pain in my thumb one day and my index finger the next. Not to be repeated.  Then a network like sensation throughout my body for one day.  Then it's gone.  I guess the Harvoni is rounding up that HCV and starting to get it in check.

Offline skycatcher

  • Member
  • Posts: 64
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #23 on: March 16, 2015, 10:46:25 pm »
Hi Opaleye! (again -- hit the button to soon)!

It is great that you have people at work that support you. If you get too stretched out take extended week-ends if you can. Rest, laugh and eat really well. And drink lots-o-water and juice. Have you spoken with you Hep Doc about your headaches?  And regular Doc?  There might be some other medication or something like acupuncture that could help. Maybe they could recommend something or someone ...
   Good Luck with your headaches.  How is Harvoni treating you? Any strange weird  phantom pain or sensations?

   ~   Skycatcher

Offline opaleye

  • Member
  • Posts: 67
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #24 on: March 18, 2015, 08:55:13 pm »
Hi Skycatcher!

Thanks for all the encouragement and advice. I'm so used to pushing through fatigue to get through my day, but going through this treatment successfully is so much more important than anything at work.

I'm not sure if it's the same "strange weird phantom pain or sensations" but I did get a few neurological 'zaps' on Day Two. What's been strange/weird for me lately is increased photosensitivity. It's kinda like having an aura migraine, where everything looks brighter and sharper than usual and sometimes I see flashes of light. It's happened quite a bit the last few days. Yesterday I took a triptan (migraine med) and was pain free but had photosensitivity. Today the headache was tolerable so no meds, but still had the light show. Interesting that a medicine like Harvoni that is targeting viruses can affect the patient neurologically.

I have regular medical massage (range of motion and deep tissue) to help with the headaches and neck pain from arthritis. I haven't tried acupuncture though.

What kind of juice are you drinking? I got out the juicer and made some carrot/beet juice. A little goes a long way!

Hope you are feeling better! Now it's my turn to encourage you to take it easy and not do too much  :)

Opaleye
1982 Dx Non-A Non-B infection
1998 Dx HVC genotype 1a; VL < 1 Million; Liver Biopsy F0 A0
2006 Liver Biopsy F1 A1
2015 Harvoni Tx 8 wks: 15 wks post-EOT: VL ~670,000 -- Relapsed
2018 Mavyret Tx 16 wks: VL 90 at 12 wks, dr stopped Tx per VL detected, severe fatigue, dizziness (a month later got pacemaker for bradycardia)
2021 Liver biopsy: No fibrosis
2023-12-14 Started Vosevi: Hemocrit 48.8, platlets 133, ALP 141, AST 91, ALT 75, VL 1824750
2024-03-14 EOT Not Detected!

Offline Ruthie

  • Member
  • Posts: 105
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #25 on: March 19, 2015, 12:06:37 am »
Darn, I'm sorry you're still having bad headaches!

A girl I grew up with is an acupuncturist. She told me to eat melons-watermelon, honeydew, and cantaloupe-to help with headaches. Something about your body is retaining too much heat and the melons help cool you. I haven't been able to test it much because of an allergy to honeydew and cantaloupe (aka latex). I've only eaten a couple small watermelons,  because of the out of season price. It did seem to help some. IDK if it really helped or placebo effect. It may be worth you trying.

She has me doing some acupressure on myself, also.  The main one to do is SP6. You can Google a pic of where it is. If FB ever cooperates, I'll tell you the other points. I push on the points for a count of ten, then massage the area. It works even better for me in a hot bath of Epsom salts. If nothing else, the acupressure helps me relax and feel better.

The weird lights may be a type of migraine or a vision change. Myself and another person on here were recently talking about vision changes. My pharmacy confirmed it is a rare side of the Sovaldi component.

I hope you get rid of the headaches and I'll keep fighting with FB over getting those other points for you.


Offline skycatcher

  • Member
  • Posts: 64
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #26 on: March 19, 2015, 04:18:22 pm »
Hi Opaleye!
Well on Tuesday (03/17) I experienced my first B-I-G headache in a multitude of Mondays... I know that the Harvoni definitely played a big role.  It was what I would think of as a migraine type headache.  But a few other things played in also -- large weather front came through fairly rapidly. (almost always triggers headaches for me...) And I screwed up and did not drink my second water after the first coffee instead drank 2nd java and got busy and did not eat for 3 hours after waking.... :'(

Then it hit.  Wow!  What an awful experience that was.  I was uncertain about taking Advil during that 4 hour window so sent an email to my Doc's Nurse. In the evening I did take Advil because that "thang" held on all day and into the evening. The Advil helped a great deal and the next day I heard back that it is OK to take Advil or Tylenol just don't exceed 2000 gm. a day. Seems like they told me that in the beginning but I just wanted to make sure. I was feeling the presence of that headache into the next day - not as bad. But it is still there right now also. So I probably am going to increase my Advil intake through this time. Just took two...

I have experienced that color enhancement -- everything looking so bright and colorful and beautiful.  It was short lived and occurred at the beginning of the treatment. I have experienced something like that one other time many years ago after receiving massage bodywork that was an energy based work. Normally I wear glasses and have since I was a kid and for 3 hours that day after the bodywork I did not need them.  I could see just perfectly.

I think our bodies are more complicated and complex then we can ever know.  However, I am so completely amazed at science and the people who do all of this complex research.

Maybe as the treatment process goes along these little "nuggets" of unique experience that are unquantifiable are clues for us to remember and to be more aware of.  Body awareness is a good thing and it is important to tune into ourselves.

So my take about this headache is I must be ever present, more so now, and drink lots-o-water first thing and eat first thing. I've noticed that if I get hungry then I don't really feel that great either.

As far as juicing I personally don't juice very much because I like the convenience of having something ready to go.  Plus I think it is possible to get too much sugar from juicing everything.  My personal take on it.  I ask the Rx Lady about this and what she told me was it is always better to eat your food verse juicing.  So I do make an occasional smoothie or make a fresh berry blend.

A few years ago I made the conscious decision to greatly reduce my soda in-take even though I love the bubbly splash. So I started changing over to tea then more to juice today. I personally prefer one I get in the grocery store made by Ocean Spray "100% Juice" a cranberry base with many different blends. And V8 V-Fusion 100% juice.  I have been very happy with these. They taste good, they are convenient for me, and I trust the makers.  One of the biggest reasons to make this change was to eliminate high fructose corn syrup from my diet and phosphoric acid found in dark sodas (which supposedly leaches calcium from your bones.)

My though is if you enjoy juicing and the fun that comes along with that creative process and prefer the fresh - fresh - fresh then go for it.  Have fun with it!  I certainly do when I juice stuff.

I am glad that you do get bodywork.  It is an important process for relieving stress and for tuning into your body. I have had a good bit over my life and always have found it to be helpful.

Ruthie you are right those acupressure points can do a good bit to help things out. Chinese medicine is very fascinating and can be very helpful for pain.

 I wrote a book today....  ;)

    ~   Skycatcher

Offline opaleye

  • Member
  • Posts: 67
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #27 on: March 22, 2015, 09:13:42 pm »
Please forgive the late reply. You guys are awesome--Thanks so much for sharing your stories!

@Skycather -  So sorry you got hit with a B-I-G headache. For me, it seems like Harvoni just compounds any migraine triggers. The last couple days of work I took a 1/4 triptan to get me through the day then on Saturday 'toughed it out.' Today the headache was even worse so I took a 1/2 triptan and that did the trick. I've been drinking plenty of water and have tried Tylenol and Aleve, but the triptans are the only thing that works. My neurologist says it the triptan cures it, it's a migraine, even if it fells like a sinus headache. I have read scholarly articles about the safety of daily triptan use, and especially at such a low doses there is no concern of cardiac issues. I'll run that idea by my primary doc when she gets back from vacation.

I live in the South so it's Spring here, and I just had to get outside and get some dirt under my fingernails. I kept thinking about your story about over-doing it cleaning out the garage. In hindsight, I should have just attempted one task, not two. I weeded about half of the area by the mailbox where I am encouraged a creeping ground cover but then stopped (after taking a couple breaks) because I HAD to get the Japanese maple in ground as it was already starting to leaf out. Huffing and puffing I dug the hole and set the tree.

Then, looking up I noticed the cable line overhead was a bit too close for comfort. (Brain fog anyone? Should have looked up first!) So, removed the tree then dug another hole. By this time I was feeling a bit shaky and nauseous. I mean, I'm not in the best of shape anyway, but this was way beyond any heat exhaustion I have had before. My face was flushed even after taking a cool shower. What's funny though, is after I had rested for a bit and cooled down, I felt great! Go figure.

@Ruthie- Thanks for the advice on melons. I love watermelon! I have read to be careful with cantaloupe because of mold clinging to the skin, but honeydew are delicious, too. "Let food be thy medicine and medicine be thy food." ― Hippocrates. I'll have to read up on acupressure. Thanks for letting me know that the vision changes are a rare side effect of Sovaldi. Interesting that the "Patient Information" sheet only lists a few sides where there are plenty of people posting to this forum (present company included) that have many, many more. I wonder if the drug company is lurking and taking notes.

But hey, I don't mind be somewhat of a test subject. This medicine is our silver sword to slay the dragon!!  8)
1982 Dx Non-A Non-B infection
1998 Dx HVC genotype 1a; VL < 1 Million; Liver Biopsy F0 A0
2006 Liver Biopsy F1 A1
2015 Harvoni Tx 8 wks: 15 wks post-EOT: VL ~670,000 -- Relapsed
2018 Mavyret Tx 16 wks: VL 90 at 12 wks, dr stopped Tx per VL detected, severe fatigue, dizziness (a month later got pacemaker for bradycardia)
2021 Liver biopsy: No fibrosis
2023-12-14 Started Vosevi: Hemocrit 48.8, platlets 133, ALP 141, AST 91, ALT 75, VL 1824750
2024-03-14 EOT Not Detected!

Offline Ruthie

  • Member
  • Posts: 105
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #28 on: March 22, 2015, 10:43:08 pm »
Sometimes I get pissed off at being a test monkey. Then I remember this is helping other people in the future. That's ok with me. I'm into helping others.

I keep calling Gilead and telling them my sides. I want there to be a record LOL

I'm sorry I haven't gotten those points for you. I ended up with my own migraine for a few days. I took my triptan. It took the edge off, but didn't get rid of it. It felt like it was a bit different, worse in a way. I'm wondering if the Harvoni made it that way. I know it was a migraine-stupid weather changes.

Eating watermelon sure won't hurt you. The worst it can do is keep you up all night peeing! ;D

Offline skycatcher

  • Member
  • Posts: 64
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #29 on: March 23, 2015, 10:02:53 pm »
Hi Ya Opaleye and Ruthie!  Nothing is as good as a ripe watermelon!  I think the H20 in fruits and veggies is the purest and best for you.  Right now I have really been into blueberries.  Apples. Carrots. Strawberries. And Halos.  Can't get enough of those things right now.  And salads with blueberries, carrots, little tomatoes, and strawberries. (and sometimes Halos...) :)

I think it is great to get out and do things that you like to do like gardening and planting things.  Excellent that your gardening energized you Opaleye!  I am surrounded by woods and my yard is very, very shady so for me the only planting I can do is container gardening very selectively. 

Which is great because the trade off is I have lots of birds -- the wild variety that nest in the yard and a few critters. I too live in the south but the western part. So between the Harvoni and the different fronts I am experiencing enough of a headache to just go ahead and include that in the AM.


Offline skycatcher

  • Member
  • Posts: 64
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #30 on: March 23, 2015, 10:10:51 pm »
Just hit the wrong button (again).

I bet you are not the first person to dig the hole for a tree and just as you are getting ready to plant it you all of a sudden look up and OH!  Power line.  I think I've done that along the way.... Something else to check off the list...  Another way to look at it is being in the moment.

   ~    Skycatcher

Offline Ruthie

  • Member
  • Posts: 105
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #31 on: March 23, 2015, 11:36:06 pm »
You know, skycatcher, I've been craving fruits and veggies a lot. There's probably something to that. We know they have a lot of water and good nutrients. Our bodies probably want them to help rid ourselves of the demons.

I live in the western part of the South, too. These barometric changes are killing me, y'all!

Offline skycatcher

  • Member
  • Posts: 64
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #32 on: March 27, 2015, 01:54:12 pm »
That's right Ruthie!  Lots-o-veggies and lots-o-fruit. Plus water, water, water.  And Advil.  Some days are better than others....
   ~    Skycatcher     ;)

Offline opaleye

  • Member
  • Posts: 67
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #33 on: March 29, 2015, 12:01:34 am »
I love fresh fruit and veggies, too! I credit being in such good shape after dealing with this virus for 30+ years to being a health food nut since my early teens. This time of year I especially love citrus. After all that talk of melons I got a small round organic watermelon that was much, much too expensive but since it was seedless and there was very little white in the rind I felt like I got my money's worth.

So, into week four now. I'll have a blood draw on Monday then have an appointment at the hematologist's office on Wednesday. (I was told to do the lab work in four weeks and come back for a follow up visit in four week. I called later and the receptionist said to get the labs done 2 days before the visit. I thought it took longer to get the HVC Quantasure results...  Will ask at the lab and reschedule the visit if it won't be ready by then.)

Hope to have some good news to share soon!! :D
1982 Dx Non-A Non-B infection
1998 Dx HVC genotype 1a; VL < 1 Million; Liver Biopsy F0 A0
2006 Liver Biopsy F1 A1
2015 Harvoni Tx 8 wks: 15 wks post-EOT: VL ~670,000 -- Relapsed
2018 Mavyret Tx 16 wks: VL 90 at 12 wks, dr stopped Tx per VL detected, severe fatigue, dizziness (a month later got pacemaker for bradycardia)
2021 Liver biopsy: No fibrosis
2023-12-14 Started Vosevi: Hemocrit 48.8, platlets 133, ALP 141, AST 91, ALT 75, VL 1824750
2024-03-14 EOT Not Detected!

Offline skycatcher

  • Member
  • Posts: 64
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #34 on: March 30, 2015, 04:55:51 pm »
Hi Opaleye!  Good luck on the blood draw.  I get my labs Thursday. And my 1st follow-up visit is the following Thursday.  I know my first group of blood work did not all come back for 5 days. The one that took the longest was the Fibrosure. I assume (a dangerous thing to do ...) that this will also be part of that draw. Headaches are still happening for me but I am managing them ok... Life with Harvoni.

I love fresh foods and have always been really conscientious about what I consume or fix for others.  I like eating fresh as much as possible.  And whole foods verses processed.  I am very happy that more and more organic foods are becoming available at the regular grocery store.  I use to shop at health food stores as much as possible but not so much today. I lived in a different place then. Where I live now only has 3) regular grocery stores  2)  discount grocery stores  and  1)  Health food store.  I do go there to get a few things. And the Farmer's Market when it opens for the season.  I will have to look for a watermelon now ... 8)
 Hope all is good for you today.
    ~   Skycatcher

Offline opaleye

  • Member
  • Posts: 67
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #35 on: March 30, 2015, 07:36:52 pm »
Yeah, I looked back at my labs from October that included HVC Quantasure and the report was 5 days after the blood draw, so I called and rescheduled my appointment. I feel better now knowing that this blood draw won't be any earlier than 4 weeks. I'm going in on Thursday, too  :)

I've been dealing with headaches most days but not all. What I've really noticed though is my ears ringing much more than normal, sometimes so loud it is disorienting. Starting to get more of the brain fog, especially in the early part of the day. Been really tired, but am sleeping well!

No complaints though, it will be all worth it!!  :D
1982 Dx Non-A Non-B infection
1998 Dx HVC genotype 1a; VL < 1 Million; Liver Biopsy F0 A0
2006 Liver Biopsy F1 A1
2015 Harvoni Tx 8 wks: 15 wks post-EOT: VL ~670,000 -- Relapsed
2018 Mavyret Tx 16 wks: VL 90 at 12 wks, dr stopped Tx per VL detected, severe fatigue, dizziness (a month later got pacemaker for bradycardia)
2021 Liver biopsy: No fibrosis
2023-12-14 Started Vosevi: Hemocrit 48.8, platlets 133, ALP 141, AST 91, ALT 75, VL 1824750
2024-03-14 EOT Not Detected!

Offline skycatcher

  • Member
  • Posts: 64
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #36 on: April 01, 2015, 05:02:56 pm »
Good Luck tomorrow!

You know I credit my overall health to being health aware.  Mainly eating close to nature and the best fresh food I can find. I think of food as being medicine.(in a sense). You know that frisky green cabbage is really good for your blood cells...  I think as long as it is not cooked to death it is a great and simple food.  And versatile.  I have a muffin recipe that is really very good and healthy and will share later.  I am sure you have a few go to recipes as well.

Yesterday and today I don't have a headache.  For the first time since that really severe one.  Knock on wood .....

    ~   Skycatcher

Offline opaleye

  • Member
  • Posts: 67
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #37 on: April 02, 2015, 07:10:46 pm »
Hi Skycatcher!

Good luck on your labs today, too! Patiently waiting...

So, I'm wondering if "frisky green cabbage" is a typo or a new variety I haven't heard of yet  ;)  I love growing vegetables but haven't had the energy to plant anything yet. There is one super-hardy kale plant that survived the winter, and that was after getting munched on numerous times by caterpillars during the summer. Sometimes I blend up spinach and/or kale in a Nutribullet with cucumber, apple, and ginger. Delicious and nutritious!

Here's my favorite super-simple but oh-so-good cruciferous recipe:
  • 1 head fresh bok choy, stems chopped, leaves sliced thin
  • 2-3 fresh organic carrots, sliced thin
  • 1 can organic black beans (any beans will do, and it's nice if you can find the PBA-free cans)
  • 1 clove fresh garlic, crushed
  • balsamic vinaigrette or other favorite dressing (olive oil, lemon juice, and fresh herbs is good)
Mix the ingredients then let the garlic mellow for an hour or so. That's it!

I'm still having headaches most days. Fortunately the triptan Rx take care of them and brings down the ringing in my ears. I just can't take it every day. I'm also having more skin issues--blemishes on my arms and shoulders and red spots on my legs. Not that I didn't have them before but now more than twice as many. Seems like with this medicine, at least for me, that it amplifies existing conditions.

Well, we have officially completed Week 4. Cause for celebration!!  :D :D :D
1982 Dx Non-A Non-B infection
1998 Dx HVC genotype 1a; VL < 1 Million; Liver Biopsy F0 A0
2006 Liver Biopsy F1 A1
2015 Harvoni Tx 8 wks: 15 wks post-EOT: VL ~670,000 -- Relapsed
2018 Mavyret Tx 16 wks: VL 90 at 12 wks, dr stopped Tx per VL detected, severe fatigue, dizziness (a month later got pacemaker for bradycardia)
2021 Liver biopsy: No fibrosis
2023-12-14 Started Vosevi: Hemocrit 48.8, platlets 133, ALP 141, AST 91, ALT 75, VL 1824750
2024-03-14 EOT Not Detected!

Offline skycatcher

  • Member
  • Posts: 64
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #38 on: April 03, 2015, 07:23:51 pm »
Hi Opaleye !

Oatmeal Berry Muffin

1 cup old-fashioned oats
1 cup unsweetened applesauce
½ cup milk
1 egg
2 Tbsp. Veggie oil
¾ cup whole wheat flour
2 Tbsp. baking powder
1 tsp baking soda
¼ cup unrefined sugar
1 tsp cinnamon
½ cup mixed berries (blueberries, raspberries, blackberries) 
** I use blueberries and strawberries or any other fruit that sounds good.  Pineapple, blueberry, etc.  I always add at least 1 cup of berries/ fruit or more like a handful of this, handful of that.

Preheat oven to 375 F      Fill muffin pan with liners and spay with cooking oil.

Add oats, applesauce, milk, egg, and oil. Mix.

In a large bowl add flour, baking soda and powder, sugar and cinnamon.  Make a well and add oat mixture. Combine well but do not over mix. 

Add berries and fold in gently.   Bake for 15 – 20 minutes.   Enjoy. :) :) :) :)

You are right we are on the same treatment schedule pretty much.  After labs and grocery store I was mostly done for the day yesterday.  The good news is no headaches now for three days in a row.  Pollen, fronts and all.

That kale plant sounds like a soldier feeding the caterpillars and now potentially you. I have too many trees to garden even container gardening.  What little can make it is voraciously consumed by the grasshoppers.

   Take care    ~    Skycatcher

Offline opaleye

  • Member
  • Posts: 67
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #39 on: April 06, 2015, 10:58:17 pm »
Hi Skywatcher - That muffin recipe sounds delicious! I love berries. I've read that blueberries in particular are healing to the liver.

So how are you feeling? I don't want to jinx it, but I've actually felt pretty good the last few days. No headaches, well, at least nothing long-lasting, since Friday. And even if I am tired, I feel stronger. I even did some yoga, worked a little in the garden, and did a few household chores. (Usually all my energy goes into my work week then I completely veg all weekend.) I'm feeling more clear-headed, too.

Hope you are feeling better, too!  :)
1982 Dx Non-A Non-B infection
1998 Dx HVC genotype 1a; VL < 1 Million; Liver Biopsy F0 A0
2006 Liver Biopsy F1 A1
2015 Harvoni Tx 8 wks: 15 wks post-EOT: VL ~670,000 -- Relapsed
2018 Mavyret Tx 16 wks: VL 90 at 12 wks, dr stopped Tx per VL detected, severe fatigue, dizziness (a month later got pacemaker for bradycardia)
2021 Liver biopsy: No fibrosis
2023-12-14 Started Vosevi: Hemocrit 48.8, platlets 133, ALP 141, AST 91, ALT 75, VL 1824750
2024-03-14 EOT Not Detected!

Offline skycatcher

  • Member
  • Posts: 64
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #40 on: April 08, 2015, 01:13:44 am »
Hi Opaleye! I am doing just great thanks!  In fact I just made a batch of muffins and they are very good -- tweak it any way you want but definitely add whole cup of berries.

I got the labs done and results back from 2 of the 3 tests and my liver enzymes are back in the normal range.  :) :) :)  They were all three elevated before starting treatment -- the highest they had ever been. I have not gotten back the viral count yet but I should get it soon.  And see the PA on Thursday. Originally I was suppose to treat for 12 weeks but the insurance co only want to treat for 8 weeks. Scary how they are starting to dictate medicine.

Yes small burst of energy, which is really nice, mostly followed by exhaustion which is not so great.  But I had real energy for a while.  Headaches are gone.  I think it will just take time for my body to adjust to the new "landscape" minus the CHCV. I can't wait  for that!

   ~    Skycatcher

Offline skycatcher

  • Member
  • Posts: 64
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #41 on: April 09, 2015, 08:55:05 pm »
Hey Opaleye!!! Guess what??? I am non detected!!!   8) 8) 8) 8)
Liver enzymes in the normal range ....
Now if the energy train would just make it back this away I would try and do a somersault!  ( well maybe once...) Did you get your results today?

   ~    Skycatcher

Offline opaleye

  • Member
  • Posts: 67
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #42 on: April 09, 2015, 10:54:09 pm »
Woo hoo!!!  :D :D :D :D
What a relief to know you are responding!!!

My hepatologist's office called today but I was in a meeting without my phone. Didn't see the missed call until 3:45. I called back right away and the receptionist confirmed the results had been reviewed. She said the nurse would call me back...which hasn't happened yet. So I have to wait until tomorrow. I'm feeling confident that good news awaits!

Hope your energy returns soon 8)  Every day is still different for me. I did jinx it and got such a bad headache Monday that I left work early. Tuesday, I felt great. Today, another headache but more sinus than migraine. Ears still ringing something fierce.

Thanks again for the muffins recipe. I'll try that this weekend!

So happy for you  :)

~Opaleye
1982 Dx Non-A Non-B infection
1998 Dx HVC genotype 1a; VL < 1 Million; Liver Biopsy F0 A0
2006 Liver Biopsy F1 A1
2015 Harvoni Tx 8 wks: 15 wks post-EOT: VL ~670,000 -- Relapsed
2018 Mavyret Tx 16 wks: VL 90 at 12 wks, dr stopped Tx per VL detected, severe fatigue, dizziness (a month later got pacemaker for bradycardia)
2021 Liver biopsy: No fibrosis
2023-12-14 Started Vosevi: Hemocrit 48.8, platlets 133, ALP 141, AST 91, ALT 75, VL 1824750
2024-03-14 EOT Not Detected!

Offline skycatcher

  • Member
  • Posts: 64
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #43 on: April 10, 2015, 12:34:00 pm »
Thanks Opaleye!
  I have experience some amount of ringing in my ears but I take an anti-inflammatory everyday which can have that as a side effect also. It almost makes me crazed at times-- more from the meloxicam.  Occasionally the Harvoni seems to kick in and jump on. As I have experienced this side effect in the past, when it seemed deafening, I have used ear plugs to block out sound all together. Even to sleep. Which in a way has helped.
  I went to many concerts in my younger days and all those concerts have been catching up with me.  I rarely go to any music venues today but if I do I always take ear plugs and actually wear them to prevent any more hearing loss especially if it is inside verses outdoors. I also wear ear protection when using any power equipment, vacuuming, flying, or any time I will be exposed to loud sounds.
  My father has lost much of his hearing and his deficit has made me much more aware of the dangers of our noisy society and the need to take caution in these areas. With that said my guess about the ear ringing is it possibly could have more to do with blood flow around the ear hairs then not or an underlying ringing that you may not have been aware of.
   What I have done in the past and now is never dwell on the ringing because that only amplifies the sound of it.  Eliminate any sound in my house that I can control or any place that I am. Go outside and listen to nature from the birds to the bugs to the wind or an extremely quite room inside. And when the ringing is deafening I use ear plugs.  It doesn't work immediately but seems to over time and this does seem to calm it down. I even used some "holistic" ear drops for a little while and they did help a little. I tried them for 2 months. I have not spoken with my MD about this -- I usually forget as I see her rarely. In what I have read about in general it is a sign of some hearing loss. Those little hearing hairs can just take so much before they are damaged be it from actual sound or increased blood flow.  That is just my thought on it.
  Don't know if that helps any.  Hope you find out about your results soon and it is good news!
    ~     Skycatcher
   

Offline opaleye

  • Member
  • Posts: 67
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #44 on: April 11, 2015, 12:15:53 am »
Hi Skycatcher!

Thanks for all the advice on tinnitus. I had it before Harvoni but not this bad! I listened to loud music in my youth as well. Maybe that's it. I had my hearing tested about 5 years ago and found out I had lost a bit of the top end, but nothing out of the ordinary for my age at the time. Getting outside to hear nature is the best, but at night I tend to listen to music or watch videos on my laptop with headphones on (not earbuds) to cover up the ringing.

So..... drum roll please. Same results as you!!!  :D :D :D  Viral Load >15 Not Detected and normal liver enzymes!!! My liver enzymes haven't been normal for at least three decades! I was confident it would be good news, but sure feels great to know for sure!

We can do this!!  8)

~Opaleye
1982 Dx Non-A Non-B infection
1998 Dx HVC genotype 1a; VL < 1 Million; Liver Biopsy F0 A0
2006 Liver Biopsy F1 A1
2015 Harvoni Tx 8 wks: 15 wks post-EOT: VL ~670,000 -- Relapsed
2018 Mavyret Tx 16 wks: VL 90 at 12 wks, dr stopped Tx per VL detected, severe fatigue, dizziness (a month later got pacemaker for bradycardia)
2021 Liver biopsy: No fibrosis
2023-12-14 Started Vosevi: Hemocrit 48.8, platlets 133, ALP 141, AST 91, ALT 75, VL 1824750
2024-03-14 EOT Not Detected!

Offline skycatcher

  • Member
  • Posts: 64
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #45 on: April 13, 2015, 12:06:58 am »
Congratulations Opaleye!!!!!      :) ;) ;D 8)
 You know my liver enzymes have mostly been normal but at least one has been slightly elevated.  Usually just a few points like maybe 5.  And mostly the ALT. As far back as I have records is '93 and it was elevated  -- slightly. Strange virus HCV.

I am starting to think of myself as having had CHCV. Just a little bit at a time I am letting that reality slowly become a part of me. It is a very nice feeling to think of a CHCV free life.

Indeed we can!  8)

Are you comfortable with the 12 wk. test? I personally am not very comfortable so we are going for an additional 6 mo. test as well.  At that point I will sleep much better.
     ~     Skycatcher

Offline opaleye

  • Member
  • Posts: 67
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #46 on: April 15, 2015, 10:29:42 pm »
Hi Skycatcher!

So sorry my replies are so sporadic. I really appreciate your insights, but after a grueling day at work I'm totally spent. I like your idea of having "had" HVC. We're getting so close... thank goodness the liver can regenerate!  8)

I'm not sure what you meant about the 12 week test. Is that when your doctor planned on testing post-treatment, or testing at the end of a 12 week treatment? I'm not sure what my plan is. I have an appointment this Friday morning and will find out if my treatment 8 or 12 weeks.

The pharmacy called this morning to to let me know that, although my doctor prescribed 12 weeks of Harvoni (and the nurse I saw before starting treatment assumed it would be 12), the insurance company only pre-approved for 8 weeks. My viral load was less than 3 million, so I'm not surprised about that. One would think it should be up to the doctor, but I also understand that the insurance companies have a lot of people to cover.

Well, off to a hot bath now. Hope you are feeling okay!  :D

~Opaleye
1982 Dx Non-A Non-B infection
1998 Dx HVC genotype 1a; VL < 1 Million; Liver Biopsy F0 A0
2006 Liver Biopsy F1 A1
2015 Harvoni Tx 8 wks: 15 wks post-EOT: VL ~670,000 -- Relapsed
2018 Mavyret Tx 16 wks: VL 90 at 12 wks, dr stopped Tx per VL detected, severe fatigue, dizziness (a month later got pacemaker for bradycardia)
2021 Liver biopsy: No fibrosis
2023-12-14 Started Vosevi: Hemocrit 48.8, platlets 133, ALP 141, AST 91, ALT 75, VL 1824750
2024-03-14 EOT Not Detected!

Offline 554883

  • Newbie
  • Posts: 1
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #47 on: April 16, 2015, 11:49:19 am »
 :)I just got the good news treatment starts next week Harvoni !!!!! So happy to hear the side effects are mild.I've been through all the interferons and ribavirin treatments and did have one undetected result didn't last though.That was in 2001 this treatment comes just in time for me

Offline opaleye

  • Member
  • Posts: 67
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #48 on: April 17, 2015, 06:44:26 pm »
Congratulations, 554883 !!

After going through interferon and ribavirin, Harvoni should be a walk in the park for you! I'm really sensitive to drugs so I got just about every side effect on the list and then some. It's been tolerable though. I've taken some time off from work but nothing too extensive. The first few weeks are the worse. I'm sure you've already seen the advice to drink water, and more water, and more water.

Will you be on treatment for 8 or 12 week? I just received confirmation that mine is just 8 weeks. I'm into week 7, so less than 2 weeks to go! I'm have Quantasure lab tests at end-of-treatment, 3, 6, and 12 months. The doctor's office had told me over the phone that my liver enzymes were normal, but I actually saw the results today. Wow. After decades of numbers in the 70s and 80s, it was like a miracle to see 26 and 29!

Hoping you sail right through this treatment!

~Opaleye

1982 Dx Non-A Non-B infection
1998 Dx HVC genotype 1a; VL < 1 Million; Liver Biopsy F0 A0
2006 Liver Biopsy F1 A1
2015 Harvoni Tx 8 wks: 15 wks post-EOT: VL ~670,000 -- Relapsed
2018 Mavyret Tx 16 wks: VL 90 at 12 wks, dr stopped Tx per VL detected, severe fatigue, dizziness (a month later got pacemaker for bradycardia)
2021 Liver biopsy: No fibrosis
2023-12-14 Started Vosevi: Hemocrit 48.8, platlets 133, ALP 141, AST 91, ALT 75, VL 1824750
2024-03-14 EOT Not Detected!

Offline skycatcher

  • Member
  • Posts: 64
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #49 on: April 19, 2015, 04:36:31 pm »
Hi Opaleye and everyone!
I had a computer line issue -- happens once in a while.  This time it took a little longer to correct... Then the computer gets out of sink but all is well now! This is what can happen living in the boonies.

Finally...

Opaleye I thought that the same was going to be true with my company but they called me last week and I am getting round three on Tuesday.  My Doc also wanted to go with 3wks and I know the PA was calling them after my last visit to make sure for me. My last post was unclear because I was unsure about the 12 wk labs but now I know I will do another lab a week before my 12 wk visit with my Doc.  Or somewhere right around there. After that I will do labs again at 6mos. and probably another visit with the Doc.

Are you still dealing with the tinnitus? Oh it has gotten ugly for me. Have you done anything for it? Found anything that works? The ear drops that I used like a year ago is a brand called "Ring Relief" a Homeopathic product. It does not make the symptoms go away but it does take the edge off so that I can get to sleep or sleep a little longer. In desperation I have gotten another bottle of this stuff and used it. Personally I like Homeopathy. Doesn't work for everything but can be effective. Usually very gentle.

So you should be in week an half count down right?  8)      Are you getting jazzed? I know I will be in 41 days.
                                         ~   Skycatcher

Offline opaleye

  • Member
  • Posts: 67
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #50 on: April 20, 2015, 09:17:02 pm »
Hi Skycatcher!

Glad to see you back online!

Yes, the forest full of cicadas in my head are still ringing a joyful chorus. Well, joyful for them at least. Thanks for the advice on the homeopathic remedies. I'll look for them next time I'm at the natural food store.

So glad your company is covering another 4 weeks! Best to be sure all those little buggers are demolished!

Speaking of the ongoing demolition... When I was at the doctor's office last Friday I got a copy of my lab results. Over the phone a week earlier I was told "not detected" but right there on the lab sheet it has "detected" and "< 12". Now, I've read up about interpreting lab results (following links on this forum) and I understand that < 12 at 4 weeks is excellent news and that most patients, even if they are detected at end-of-treatment, completely clear the rest of the virus after 3 months post-treatment. However, the nurse shouldn't have told me "not detected" when that wasn't entirely true. That's why I always get a copy of my labs.

I haven't been feeling so good the past few days. Stayed home from work today. Feeling run down... swollen glands in my neck, chills that four blankets won't banish, nausea, the blahs and the blues. I've been drinking the requisite 100 oz of water a day but can tell I'm still dehydrated. (When I pinch the skin on the back of my hand it "tents" and doesn't go back down.)  I'm thinking that's one reason I'm feeling so poorly, but my tummy doesn't want any more water than I'm already doing. Maybe...Peppermint tea. (Why didn't I think of that earlier? Brain fog anyone?) Fresh ginger tea is good, too.

btw - I don't want to scare 554883 with all these reports of side effects. I mean, compared to the stories I've heard about previous treatments, this is definitely manageable. I'm sensitive to any medications, so I'm not surprised Harvoni is knocking me down a few notches. When I first started the nurse told me they had 12 other patients on Harvoni. When I saw her last Friday she said, "My first patient with side effects!" Some people just sail right through.

9 more pills to go!  8)

~Opaleye
1982 Dx Non-A Non-B infection
1998 Dx HVC genotype 1a; VL < 1 Million; Liver Biopsy F0 A0
2006 Liver Biopsy F1 A1
2015 Harvoni Tx 8 wks: 15 wks post-EOT: VL ~670,000 -- Relapsed
2018 Mavyret Tx 16 wks: VL 90 at 12 wks, dr stopped Tx per VL detected, severe fatigue, dizziness (a month later got pacemaker for bradycardia)
2021 Liver biopsy: No fibrosis
2023-12-14 Started Vosevi: Hemocrit 48.8, platlets 133, ALP 141, AST 91, ALT 75, VL 1824750
2024-03-14 EOT Not Detected!

Offline skycatcher

  • Member
  • Posts: 64
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #51 on: April 21, 2015, 11:56:05 pm »
Hi 554883 and welcome! Side effects kinda run the gamut but they have mostly been very tolerable. Probably the worst has been the headache but I survived that also. I feel like I have made it through the fire and I am standing on the other side now.  And you will too.

Hi Opaleye! Sorry you are feeling bummed. "Forrest full of cicadas" (LOL) good one... very appropriate way to describe the roar... 
As far as covering 4 more weeks, well at this moment I feel like a ping pong ball being bounced back and forth. First it was yes! then it was no! then yes! now no... I think??? So at this moment in time I don't think it is going to happen even after they confirmed delivery which was then canceled.  I am OK with this because I now believe that the treatment that I have had (8 weeks) is great coverage.
One ugly thing that has come to light from all of this is the power of the insurance clerk who apparently gets to practice medicine without a license or even the benefit of medical school. Oh well live and learn.....

The way my medical records are set up is as soon as they are posted to my account (within 4 business days) I can view them and make copies, send emails to my Doc or PA and receive emails.  I am getting treatment through a medical school because I prefer the latest and greatest for anything out of the ordinary. I know if it rumbles that they will hear of it. Also I have to say listening to the President speak of the ACA and the need to up date medical systems to the newest technologies and making things easier for people to access their test results, etc. I have to think that this sort of system is what he means. This system has made a great impression on me. I wish my regular Doc had this sort of access. I feel rather spoiled now and will pine for this great access in the future.... ;)

The exciting thing is people are clearing it. My PA told me the results are starting to come in people's results are very good. I will do labs in August and again about 6 mo. after that.

I also kinda felt zapped but I think it is probably more the pollen (thank goodness we have had a great deal of rain and washed it out of the air for now...) I have not experienced anything like what you are going through. Allergies can make me miserable for a few days out of the year sometimes including swollen lymph nodes. During this entire time while on Harvoni I have been easier to chill and I am still wearing long sleeves and sweatshirts.
   One thing about staying hydrated "is anticipate your thirst". If you become thirsty then you may already be dehydrated. So also staying hydrated can mean drinking things other then water. Non-caffeine teas are good. Juices are always good but you probably don't want to drink apple juice -- it can have a diuretic effect. Have you tried Gatorade?  Believe it or not it is actually really great for hydrating. The most important thing about Gatorade is not to drink a great deal of it unless you are active. But short term use to rehydrate it can be a great fix. 

My count down to "zero" is 8 days from now -- April 29 is the " last pill day "!    ;D

Really, really exciting.... Hope you feel better Opaleye!

         ~       Skycatcher

Offline opaleye

  • Member
  • Posts: 67
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #52 on: April 29, 2015, 05:48:55 pm »
Hi Skycatcher!

Thanks so much for your long message and all the advice on hydration. I ended up getting so light-headed that I finally I saw my doctor, and she diagnosed me with orthostatic hypotension (meaning my blood pressure was 20 point lower standing up than laying down). She thinks I may have been drinking too much water, and that my blood sodium levels got too low. I have a really low-salt diet, so maybe that's it. A liter of IV fluids, Gatorade, and watermelon have helped and I"m starting to feel better. But enough about that...

We made it!!!! Today is the day of the last Harvoni pill!!!!   8) 8) 8) 8) 8)

Hope you are feeling as triumphant as I am  :D

~ Opaleye
1982 Dx Non-A Non-B infection
1998 Dx HVC genotype 1a; VL < 1 Million; Liver Biopsy F0 A0
2006 Liver Biopsy F1 A1
2015 Harvoni Tx 8 wks: 15 wks post-EOT: VL ~670,000 -- Relapsed
2018 Mavyret Tx 16 wks: VL 90 at 12 wks, dr stopped Tx per VL detected, severe fatigue, dizziness (a month later got pacemaker for bradycardia)
2021 Liver biopsy: No fibrosis
2023-12-14 Started Vosevi: Hemocrit 48.8, platlets 133, ALP 141, AST 91, ALT 75, VL 1824750
2024-03-14 EOT Not Detected!

Offline skycatcher

  • Member
  • Posts: 64
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #53 on: April 30, 2015, 04:00:10 pm »
Hi Opaleye and All!

You know I had wondered about you being too hydrated.....  Sometimes people can drink tooooooo much water and flush out their minerals by creating an imbalance. For me personally I don't worry about sodium so much even though the high consumption of it can certainly lead to stroke, heart attack, aggravation of diabetes, high blood pressure, etc.  But with that said I always cook with as little as possible and know that when I eat out I always get too much salt. Sometimes I may go out west to the desert areas or mountain areas and whenever we are out hiking and exploring we always make sure that we have hydrating fluids:  Gatorade and Coke or Pepsi.  If you ever find yourself out somewhere and need hydrating quickly either of these sodas will work very quickly because of the sodium content. And they provide sugar for your brain which can be very important.
   I hope that does not happen to you again it sounds very stressing and no fun. From the what it is worth department I always have some salt every day. Sea Salt with iodine of course.

Yes you are right we have made it to the end of treatment!  ;) :) ;D 8)
Now the long wait for the next labs...  But that is not going to slow me down with a great spring and summer unfolding right before my eyes. Now if my energy train could just get going a bit faster that would be fine.

    ~   Skycatcher

Offline opaleye

  • Member
  • Posts: 67
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #54 on: May 03, 2015, 04:02:32 pm »
Yeah, my energy train is sputtering a bit, too. But know that the dragon has been conquered (to at least I will believe it has been until told otherwise), on to addressing other health concerns that have taken a back seat, like hypothyroidism which contributes to undesirable BMI. My diet is much better than average, but the weak link is lack of activity. A sedentary job doesn't help, nor does me bringing that sedentary work home way too often. One step a a time they say. Off to step outside and putter in the garden.

Hope your train hasn't gotten back on track!  :D
1982 Dx Non-A Non-B infection
1998 Dx HVC genotype 1a; VL < 1 Million; Liver Biopsy F0 A0
2006 Liver Biopsy F1 A1
2015 Harvoni Tx 8 wks: 15 wks post-EOT: VL ~670,000 -- Relapsed
2018 Mavyret Tx 16 wks: VL 90 at 12 wks, dr stopped Tx per VL detected, severe fatigue, dizziness (a month later got pacemaker for bradycardia)
2021 Liver biopsy: No fibrosis
2023-12-14 Started Vosevi: Hemocrit 48.8, platlets 133, ALP 141, AST 91, ALT 75, VL 1824750
2024-03-14 EOT Not Detected!

Offline skycatcher

  • Member
  • Posts: 64
Re: Rejected, approved, starting Harvoni tomorrow!
« Reply #55 on: May 12, 2015, 11:55:08 am »
Hey Opaleye --- apologies for the long delay --nothin' personal... Yes I am the same, now looking at other issues for myself to work on in order to improve my over all health.  The energy level is like a two-step dance.  Ultimately I am starting to notice a nice underlying improvement in my energy levels though.  It's like I get exhausted (nothing at all like I used to feel -- so I don't like using this word though it is still appropriate for now...)  but so far I am either not zapped the next day or only mildly zapped. So that is a BIG improvement over all for me.  And with each new day I feel a little stronger and I am doing a little more.
I was involved in a bad auto wreck in 2001 (airlifted out and thankfully taken to a trauma center) and have some deficiencies from that bad experience.  But I am considering PT and other body work to see if I can make a few improvements. Perhaps get a little stronger overall and strengthen my weak areas. At this moment I think I will allow myself a little more time to get my over all energies up a tad before beginning a set program.
For me that is just doing a little more physically everyday.  Parking farther out in the parking lot at the stores (unless it is raining) and just walking more and doing more in general.  If need be creating an excuse to walk more each day.
Believe it or not walking is one of the best things you can do to be healthy. I treadmill sometimes but prefer to walk outdoors until it gets too hot or the horse flies/deer flies get too aggressive....   ;)  (And with those things after you it is no longer walking but flat out running for your life... the joys of country living...)
Walking will not correct all ills but can help the body find balance. The endocrine system too. For me personally balance is the most important thing. Harmony within. That is what I seek.  And yes I can loss a few lbs too. Personally I don't care so much about losing lbs as much as creating balance within. Which becomes a reflection outwardly.
And I will from this point on check in regularly because this process is very important to me. I don't get on line everyday but I will definitely check in with you several times a week.
I have had tons of rain here, lightening, and tornadoes over the last many days. On Sunday a tornado went by close enough to hear from the back deck and Wow! was that scary. It touched down probably about a mile or mile and half away.  Thankfully no one was hurt but quite a few trees were ripped up and mostly twisted to shreds. We lost power for about 4 hours but they got us back on very quick considering lines were torn down.
Opal don't work too much at home -- make time for you.
   ~    Skycatcher
 

 


© 2024 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.