Author Topic: Harvoni side-effects (maybe?) (Read 15204 times)

Jdemaris · « **on:** January 09, 2015, 09:17:55 am »

I'm 62 years old. I've probably had Hep C for nearly 50 years. 1B genotype. Never considered treatment until now. I had two friends who went though the old treatment and died of liver cancer later. That and the 30% chance of success kept me away from the old treatment. I don't drink and am in pretty good shape so figured the old treatment was not worth the risk. I was getting pretty worn down though and had not slept well in years. Also have a lot of arthritis-like symptoms.

So, long-story-short, I've been on Harvoni for 6 weeks now. Had a miserable time getting my insurance to cover it but that's a different story. 1st they'd only approve 1/2 of my prescription and later gave me 28 days too much of it!

First 4 weeks was "almost" uneventful. Off and on headaches. But I began sleeping like I hadn't done in 30 years. DEEP sleep and wild dreams which is highly unusual for me.

5th week - I started having blackouts if I moved too fast. Especially when first getting up in the morning. For two mornings - I had to crawl out of bed and go to the bathroom crawling on all fours. If I stood up, I'd keel over. My dog enjoyed it though. She thought I was playing games with her. Also had some early morning nausea.

6th week now. If I get up slowly in the morning and do not move too fast I do OK. I pretty much stay light-headed all day and evening though. Especially if I sit still for awhile and then get up fast.

I'm still sleeping like a little kid (with vivid dreams). That in itself is a blessing. I am my doctor's first Harvoni patient so he has no idea what to make of my dizzy spells. I guess I can't say for sure that the Harvoni is the cause. But hey . . I'm 62, active, and never had any such thing in my life until now. So, time will tell.

Also I have an extra 28 days of Harvoni sitting here that my doctor says I need not take. So my full course - I guess - will be too runs of 28 pills, i.e. 58 days.

PaulG · « **Reply #1 on:** January 09, 2015, 06:52:06 pm »

I'm just finishing a 8 week treatment of harvoni and have not had any problems besides headaches and a rise in blood pressure. Wow on the extra pills I was hoping for a 12 week treatment but only got approved for 8 weeks

BattleTheBeast · « **Reply #2 on:** January 10, 2015, 02:13:54 am »

Hi Jd,

If it was me, I would take the extra 4 weeks of Harvoni especially after fighting to get it.

Have you considered going to see a doctor more experienced with the new medications for a 2nd opinion?

I've seen a few posts where some of the folks on Harvoni are having some Blood Pressure issues, perhaps that's what's happening with you and the dizzy spells, just a thought.

Do you know what you VL load was when you started? Have you had a blood test since that shows you are now undetected? Are you cirrhotic?

I just think there are questions you should get answers for before you decide not to continue treatment for the additional 4 weeks.

You may want to look at this as well: http://depts.washington.edu/hepstudy/presentations/uploads/103/ledipasvir_sofosbuvir_master.pdf

Mel

Jdemaris · « **Reply #3 on:** January 10, 2015, 08:25:14 am »

I don't recall what my viral load is (or was). I do know it's been the same since my first testing around 1990. The gastroenterologist that is treating me says my viral load is low enough to call for 8 weeks of treatment instead of 12. He did not even prescribe the extra 28 days worth that came in the mail.

Note that I'm in a rural area and don't really have a choice of seeing a 2nd doctor for a 2nd opinion. It took me 4 months just to get the one appointment I had with this one and he's 80 miles from me.

I recently moved from central NY to northern MI. My doctor in NY (a GP) had been testing my viral load every two years and my liver functions every year. Plus a few ultra-sounds and one biopsy about 10 years ago. That biopsy showed "moderate fibrosis." Liver functions have always been a "little higher then normal" since I was a teenager. Since I was a heavy drinkerand drug abuser when I was a teen - for all I know that "moderate" damage could be from my youth. I have not touched any drugs in over 40 years and no alcohol in 20 years.

So, I've seen the liver-doc once. He prescribed the Harvoni as it has just been released a few days before my appointment. 6th week now and so far, no follow-up at all. No testing of any sort. I called his office and asked his nurse about the extra Harvoni pills I got. She said that stats show almost no difference in cure rates for someone like me between an 8 week course and a 12 week course. I suggested I get a viral-load test on my 7th week and see what it shows before I decide about taking the extra 28 days. I have not heard back, so far.

Thanks for the input about blood pressure. I had never given that a thought since mine has always been perfect. I think I'll get it checked locally by my regular doctor.

BattleTheBeast · « **Reply #4 on:** January 10, 2015, 10:07:17 am »

Hi Jd,

Not sure what the nurse read but for me even an extra 1 or 2% is worth the 4 weeks although I don't have the issue you have with the dizziness. I agree that maybe a quick check up with the GP could resolve the dizzy issue and you could feel way better!

You can even ask your GP to run the blood tests for you to get your viral load, it's just a lab test and any Doctor can write the Lab Slip for you. It's called a a qualitative HCV RNA and that will show your current Viral Load. It would really be a shame for you to stop now if you have the 4 extra weeks and can get through it especially without know your current stats.

Mel

JoeK9999 · « **Reply #5 on:** January 14, 2015, 07:00:54 am »

JD - I am 62 also. Gen 1a, F0-F1 and probably had hepc for close to 40 years.
Initially I was supposed to do the 8 week regimen, but got switched to the 12 week plan. You are not alone with the dizziness.
I had some minor dizziness off an on, but
at week 11 it became an everyday occurrence. I take my pill at around 12:30PM.
I notice the dizzy feeling most in the morning when I get up and then again at night.
I am getting the deep sleep also,
except we have a cat and dog and since I have been on this, the cat decided to go
crazy meowing and jumping on me at 5am every morning and blows my perfect sleep.
I have 2 pills left and hope it goes away when done. I'll let you know.

ps - I agree with Mel - if you can I would try and go for the extra 4 weeks.
Your side effects may disappear. I went through a 4 week period with no side effects
and another 3-4 week period with other side effects (extreme fatigue and stomach indigestion).

BattleTheBeast · « **Reply #6 on:** January 14, 2015, 06:13:10 pm »

Wow Joe,

2 days left? That's pretty exciting news, when do you get to go for your first Post TX blood work? I think for me the hardest part is going to be the 24 week wait after I finally finish TX waiting to make sure the beast didn't return.

I think I would know if it comes back though because of how different you feel when infected vs. not infected. If that fog hit me again, I think I would catch it quickly.

Wishing you the very best!

Mel

JoeK9999 · « **Reply #7 on:** January 14, 2015, 07:45:31 pm »

Mel,

I take my last pill tomorrow afternoon. The last week a lot of dizziness has kicked in.
It's on and off. I guess it's the Harvoni. I'm hoping it can't find any more virus so it decided to wreak havoc on me. My doc only cares about the 6 month test, but he said I can do the 3 month one too if I want. Hell yeah I want! My doc has no bedside manner. Everything is black and white to him.
Anyway I did my part for 84 days and it's out of my hands now. Just have to wait and hope for the best.

How many more weeks are you going with it? Your body's been filled up these drugs in attack mode for a long time. I'll be praying hard for the final death of those nasty little beasts in you. (and me too and everyone else in this group of pioneers)

Joe

BattleTheBeast · « **Reply #8 on:** January 14, 2015, 08:11:33 pm »

Hi Joe,

Thanks for the well wishes. I am a weird case and so I still have a bit of a journey ahead of me. It started out that I was going to be on S/O for 24 weeks but then along came the crazy allergic reaction to the Olysio so after 8 full weeks of S/O I was switched over to Harvoni for 24 weeks. Tomorrow starts week 7 of Harvoni so if the insurance continues to cover me (right now I am only approved through March 4) I have 18 more weeks to go.

Honestly I will continue to take it as long as I need to if it means SVR at the end! I am really lucky, I have an amazing ID doc who is the kindest doctor I have ever worked with, he's a really special person and an extremely knowledgeable doctor in his field of Infectious Diseases. I wish everyone had a doctor like him.

I'd push the water in when you get the dizziness, it seems to help with me when I get any sides. I'd also keep an eye on your BP, make sure you are eating a healthy diet. I caved and ate a Smashburger the other day and felt like crap for 2 days after. It tasted amazing but the price I paid after taught me a lesson I don't need to learn again.

I think I will want to get a monthly test when I finish just for piece of mind. The doctor doesn't care how many times I want to donate blood, doesn't cost him anything so I will ask him to write me the orders and just show up monthly for the test. If it comes back I don't want to wait to fight it again, I want to jump right on it as quickly as possible. I am F4 and I really can't afford to let the Cirrhosis get any worse than it already is. I kind of want to retire one day somewhere warm and get to enjoy a little bit of leisure without being sick.

Hope we all get rid of this ugly beast sooner rather than later....

Mel

Jdemaris · « **Reply #9 on:** January 26, 2015, 04:37:58 pm »

I took my last Harvoni from my two-month prescription today. I have another extra month's worth of Harvoni pills sitting here that my doctor says I need not take. I might take them anyway.

My dizziness persisted everyday during these last two weeks. A few mornings it was so bad I could not stand up and had to crawl when I first got out of bed. Now? Still mildly dizzy mostly all day and evening but not as severe. I checked my blood pressure when I was at my worst with dizziness and it was perfect.

I just got my viral-load test results back. Negative. No sign of the virus. I am also sleeping better then I have in 30 years but don't know if that is from the absence of Hep C bugs - or a Harvoni effect. Time will tell.

Long_Haul · « **Reply #10 on:** January 26, 2015, 07:23:32 pm »

I am not in the medical field, but if was me, I would go for the full 12 weeks just to be sure the Dragon is Dead. No need to look back later and have regrets. Also, you would be tossing out 32K worth of drugs that might ensure SVR. I would talk it over again with my Doc and see if there is any harm he can see in proceeding.
Best of luck with your decision and go make it to SVR!
Just my thoughts,

AL

Bob V · « **Reply #11 on:** January 26, 2015, 10:43:55 pm »

Hi Jdemaris
My doc asked for 12 week tx hoping to get approval for 8. I got approved for 12 weeks so the doc said it was up to me. I went for 12 weeks, my doc said good choice.
Good luck
Bob

Amj1951 · « **Reply #12 on:** January 27, 2015, 07:34:23 am »

Quote from: Jdemaris on January 09, 2015, 09:17:55 am

I'm 62 years old. I've probably had Hep C for nearly 50 years. 1B genotype. Never considered treatment until now. I had two friends who went though the old treatment and died of liver cancer later. That and the 30% chance of success kept me away from the old treatment. I don't drink and am in pretty good shape so figured the old treatment was not worth the risk. I was getting pretty worn down though and had not slept well in years. Also have a lot of arthritis-like symptoms.

So, long-story-short, I've been on Harvoni for 6 weeks now. Had a miserable time getting my insurance to cover it but that's a different story. 1st they'd only approve 1/2 of my prescription and later gave me 28 days too much of it!

First 4 weeks was "almost" uneventful. Off and on headaches. But I began sleeping like I hadn't done in 30 years. DEEP sleep and wild dreams which is highly unusual for me.

5th week - I started having blackouts if I moved too fast. Especially when first getting up in the morning. For two mornings - I had to crawl out of bed and go to the bathroom crawling on all fours. If I stood up, I'd keel over. My dog enjoyed it though. She thought I was playing games with her. Also had some early morning nausea.

6th week now. If I get up slowly in the morning and do not move too fast I do OK. I pretty much stay light-headed all day and evening though. Especially if I sit still for awhile and then get up fast.

I'm still sleeping like a little kid (with vivid dreams). That in itself is a blessing. I am my doctor's first Harvoni patient so he has no idea what to make of my dizzy spells. I guess I can't say for sure that the Harvoni is the cause. But hey . . I'm 62, active, and never had any such thing in my life until now. So, time will tell.

Also I have an extra 28 days of Harvoni sitting here that my doctor says I need not take. So my full course - I guess - will be too runs of 28 pills, i.e. 58 days.

Jdemaris, are you checking your blood pressure at home when this happen? I wonder if yours is getting to low? Did your doctor do a blood workup to see if something else is going on? I have an uncle who has been having some similar problems, but he's not on Harvoni, no Hep c, but he finally found out after blood work and a MRI his BP is getting to low and it was causing the black out/dizziness. But it could also be something else, I hope you'll keep trying to find out what it is.. maybe a 2nd opinion. I am really sorry to hear your having problems. Maybe call the support for Harvoni and ask them if anyone else is reporting these issues? I agree on taking the extra bottle.. ONCE you find out whats going on : )

Meredith

Jdemaris · « **Reply #13 on:** January 27, 2015, 10:22:22 am »

I'm not highly concerned over the dizziness. I checked my blood pressure when it was at its worst and my pressure was fine. I'm 62 years old and never ever experienced any sort of dizzy spells like this until taking the Harvoni. Yes, it could be a coincidence, but I doubt it. I consider myself lucky after hearing the horror stories of what many others went through with the old treatments. One friend of mine went through 6 months of agony about 10 years ago to get cured. Then after all that - maybe a year later - he died of liver cancer. For all I know - that old poison treatment helped to do him in.

I've known I had some sort of Hep since the 1970s. When it was finally IDed when Hep C was discovered - I decided there wasn't enough promise of success to risk the old treatment. This one? Seems to be great. Let's all hope we don't hear a few years from now about some weird down-side to it. It almost seems too good to be true.

I am my doctor's first Harvoni patient. So he has little history to go on. Just recommendations from drug companies. With my viral load and genotype - his recommendation was 8 weeks. He asked for it and I was only approved for 4 weeks. Then there was an "in house" review at the insurance company and all-of-of-sudden they send me four more weeks work. Then a weeks later, another four weeks worth. So as I said before, my doctor only prescribed 8 weeks but I got sent 12 weeks worth. I'll probably take it. I figure I'll only get one shot at this.

Amj1951 · « **Reply #14 on:** January 27, 2015, 10:44:41 am »

You might consider a 2nd opinion, but I hope you feel better quickly! : )

Meredith

Bob V · « **Reply #15 on:** January 27, 2015, 11:11:50 am »

I am my doctor's first Harvoni patient. So he has little history to go on. Just recommendations from drug companies. With my viral load and genotype - his recommendation was 8 weeks. He asked for it and I was only approved for 4 weeks. Then there was an "in house" review at the insurance company and all-of-of-sudden they send me four more weeks work. Then a weeks later, another four weeks worth. So as I said before, my doctor only prescribed 8 weeks but I got sent 12 weeks worth. I'll probably take it. I figure I'll only get one shot at this
----------
All I can say is educate yourself and stay on top of things.

Good luck

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Author Topic: Harvoni side-effects (maybe?) (Read 15204 times)