Post harvoni about 9 months. lots of issues. Not working. (Due to harvoni or ?

[Igotmine]

[/headache

[bwhenne]

I'm 8 months cured and can say you sound like me! I called in, again, today because of extreme tiredness.  Its not in the realm of impossibilities that I will take a LEAVE of ABSENCE in order to find out what is causing this.
Do you have cirrhosis? I have stage 4. I watch my diet, mainly the amount of salt, for thats all the doc warned me about. Its hard to find food with little or no salt!

I also have a patch of unusual white hair thats growing at the back of my head.

This is all thats come up so far with me, my fear is in a couple of years I will see a commercial on TV saying "Did you take Harvoni for HEP C treatment? If so you may be eligible for a cash reward. Call 1-800-Crooked Lawyer" Good Luck.....

[Lynn K]

Hi bwhenne

Your tiredness is likely attributable to your liver cirrhosis. I was diagnosed with cirrhosis in 2008. Have you had upper endoscopies to check for  esophageal varices? Do you have any edema?  Are you having blood work and abdominal ultrasound done every six months as would be the standard protocol to monotor for early signs of HCC (liver cancer) as those of us with cirrhosis are at increased risk for liver cancer even with cure of hepatitis C although that risk is greatly reduced.

 On my third upper endoscopy I was found to have a grade 3 esophageal varices that required banding to avoid having a life-threatening bleeding incident.  I've had lower leg edema for many years and have been taking a diuretic to help with those symptoms.

With having cirrhosis we really had no other option not to treat. ESLD (end stage liver disease) is a very serious life shortening medical condition.

[Igotmine]

Yes The day they told me my hepatitis C was non detective is the day that they told me I had the beginning cirrhosis stag which I did not have four months ago. I am uncontrollably itchy at times I'm just chilling with my scalp my hands I do have an appointment to see disability md at the end of the month   I was a nurse for 20 years and I don't have benefits now so for me to go get a blood test is $1000.    Yeah I too am waiting for a commercial that says did you ever do the medication harvoni.  Has anyone ever told you that all the symptoms are due to the medication and can we be compensated it has changed my life totally

[dragonslayer]

I just googled for you and I didnt find any class action suits against Gilead; just against insurance companies denying access to it.

https://www.inspire.com/groups/american-liver-foundation/discussion/harvoni-class-action-lawsuit/

[Lynn K]

Hi Paul

That was my initial thought about the comment made and did the same google search. But upon rereading I realized the OP is anticipating something like that may occur in the future not that it has.

Personally I am doubtful about a class action occurring.

Igotmine

Wondering if you have elevated Bilirubin as itching can be a symptom of elevated Bilirubin caused by cirrhosis.

I have heard recommendation to help with itching like oatmeal baths and using oatmeal soap also using benadryl cream or taking benadryl tablets with your doctors approval as benadryl (diphenhydramine) can reduce itching symptoms.

[dragonslayer]

>>The day they told me my hepatitis C was non detective is the day that they told me I had the beginning cirrhosis stag which I did not have four months ago. I am uncontrollably itchy<<

Ive never heard of cirrhosis being a symptom of Harvoni.  Im pretty sure that's a law suit we'll never see.   Unfortunately, while Harvoni does cure most people, it doesnt cure everybody..  In addition, there are rare cases where the liver will progress toward cirrhosis despite being cured of HCV.

[andrew j]

I am ten months or so post-Tx.

I am tired all the time, too.
... It's like a deep and ever-present residual tiredness.
I do all the right things (I think) ... diet, moderate exercise ... I drink plenty of water.
I continue to take my old cocktail of supps. - though probably don't need to anymore.

There is another post on this subject by Rocket Girl (mistakenly put in the
'Hepatitis C Research News and Studies' section).

... As I posted on that thread - maybe it's simply about recovering and readjusting after all those years of Hep C.
... Maybe it's just about starting to age a bit (I'm 59).

I've been to see the GP, and had a blood test done - but everything seems to be OK.
I'm going to see him again this week.

Maybe I'll drop the supps. for a while and see if that helps.

Eighteen months or so ago I got a horrible staff. infection and subsequent leg injury (thanks to brain fog) - and I now walk with a limp.

Maybe that's the problem?
Mobility issues have slowed me down - so I guess my circulatory system and
metabolism have also slowed down.

... Actually - I think I'll try a bit more - esp. upper-body exercise! ...

[WholeFoods]

I am almost 2 years post Harvoni and still have problems too. I was stage 2/3 fibrosis. Had the virus 35 years. I can say stamina and problems with muscle aches and neuropathy are very slowly improving with time. I track everything from what I eat to barometric pressure, pollen counts and viral activity at work. I can say with almost certainty that the only thing that seems to give me the most trouble is the viral activity at work. This was a problem before TX as well. My immune system seems to react to every little virus it encounters and lays me flat for a day or two. At first I suspected heart valve damage with Harvoni because I had a lot of chest discomfort, occasionally still do, so am watching how much caffeine and sodium I'm consuming. The only thing I can think of is, if the immune system is largely dependent on gut health, and most of us have really sluggish livers and maybe missing a gallbladder, then until our livers get better, which is going to take a long time, we can likely expect quite a haul until then. Too bad life won't slow down long enough to let us heal better and quicker. I'm convinced if it did, some of us would have been feeling much better by now?

[andrew j]

That's interesting.

I am forever trying to slow things down ... trying to pace myself, so I can feel that
things are under control.

I think I learnt to do that when I had Hep C (yay!).
I was full-blown symptomatic - so had to constantly work at keeping things under control.
It took a lot of discipline ... a sort-of meditative discipline, if that makes sense?

Sometimes I wish I could do nothing except rest and look after myself for a while.

[BattleTheBeast]

Just wanted to share that two years post EOT and many specialists later they found 2 arteries 70% blocked. I actually had a minor heart attack with no permanent damage. The entire time my EKGS and Echo's were normal; the only thing off was my heart enzyme was slightly elevated and rising. I had a cardiologist who actually believed me and everyones symptoms could be a little different. I was exhausted and in pain constantly; my whole body hurt. What got me to the ER was that I started having pain going down my left arm if I tried to walk down the block. My "Fibromyalgia" pain is now gone and I feel like a new person. Please, please go see a cardiologist and ask them to check you very closely for heart disease if you are having muscle pain. I also learned that a stress test (even nuclear) only shows about 80% of all blockages. I was misdiagnosed by four specialists with Fibro and not one of them even considered heart disease. Be aware and don't give up looking for answers!

[Lynn K]

Hey Mel!

Good to see you around and great news they have found something to be treated.

How are you doing these days? Hoping you are getting the help you need and are feeling much better.

[chrismr222]

I am post Harvoni, 12 months, I have developed a condition which my auto immume system failed to reset itself from the Hep C. I have a condition in which I get a fever which is off the scale, flu like symptoms, It has gotten so bad that when I walk or someone touches me I scream. It is so painful to do anything. This is the fourth time I've gotten the same condition in 6 weeks. Every other week I get the same condition. I would of never figured this was from Harvoni until my roommate, who had also take Harvoni after I did (I have geno type 1 and he has geno type 4) So we got infected from different sources He has the same sickness, then I found out another friend of mine who took Harvoni before I did, is suffering from the exact same condition. This is not a isolated case. This condition is in response to taking Harvoni. There are many unknowns to be which are going to be swept under the carpet by the makers of Harvoni. We are experiments that there is no way of knowing what our outcome will be. Harvoni was not tested enough before it was approved. The fact that these conditions were told to us before we started Harvoni should be criminal. Lucky I have a Hep C Dr, that is more than concerned about my new illness. She is going to send me to the specialist that will be able to find a way to reset my immune system.
Since I finished the Harvoni, I have tested positive for colon cancer. I don't know the out come of this positive test until this friday. Don't know if this is related or not. I feel like I am falling apart after Harvoni. I feel like I traded my Hep C for unknown illnesses. It is not a trade I ever wanted to do. Im stuck with the conditions that Harvoni caused. It is not the lifesaver that it is being presented to be.

[andrew j]

Hi chrismr222,

So sorry to read about your troubles post - Harvoni.
It seems that while the vast majority have experienced relatively trouble-free treatment, a small percentage have wound up with these devastating problems.
As you say - because these drugs are relatively new - little seems to be known about these adverse reactions.

[Yes] - there are some here who have reported similarly devastating adverse reactions (not including cancer, to the best of my knowledge).
Hopefully one of them will chime in soon.

Best wishes (and good luck for Friday!),

A.

[andrew j]

P.S. You might be interested in Morab's post, on D63's thread, in this section.

[val]

I started taking my (Harvoni) Ledipasvir 90mg Sofosbuvir 400mg tablets yesterday.  I do have the dizzy, foggy headache going, which an Aleve has help with that. 

But, prior to starting the medication I had the itchy skin and scalp going on. 

I found "Tea Tree" shampoos, lotions and soaps have cooled the itching and it is now very mild, if any at all. 

I also started taking the Probiotic pearls, prior to taking this medication, and will take on and off, throughout the treatment, as this helps put the beneficial flora and bacteria in the gut.  This should help with the nausea and so far, I have not experienced the nausea, as of yet. 

I would be interested in what supplements that have been okayed by your doctor, to take with this drug.  If anyone has any suggestions that their Doctor has approved, I would appreciate the input.

I hope this helps.  What a journey, I'm so glad I've gotten to this point.  Best of luck on your journey, too.  Val

[Lynn K]

Most of us avoided taking anything we did not have to take for our short duration of treatment in order to avoid any risk of interfering with our meds

[andrew j]

Chrismr222,

... See now Patty's post on D63's thread.

[val]

I have experienced the itchy scalp and skin, for quite awhile.  Tried OTC caps, gels, lotions, etc. even prescriptions.  I started washing my hair with (Natures Gate) Tea Tree shampoo and using Tea Tree conditioners and finally found relief.  They can be drying, so I had to use extra conditioners with the Tea Tree conditioner and alternate my shampoos, but my scalp quit itching!!!  I also found a Tea Tree lotion that has helped my skin and use Tea Tree liquid soap, by Dr. Bonner.

I hope this helps and you find the same quality of relief I experienced.  Good luck

[Nicola000]

Hi Chrism22
I am 9 months post Harvoni and have the exact same issues. I have fevers and flu like symptoms that come and go across each week. It is extremely difficult to function normally. I was also left with intermittent neuropathy that began on day 3 of treatment and never left.
I had 1B and no fibrosis 0.2.
I was in good health all my life and asymptomatic to hepatitis  prior to Harvoni treatment.
I had a really rough time on treatment and am not much better off now.
My doctor believes it is connected to Harvoni but is unsure what can be done about it.
I have had so many tests and everything comes back clear.
Please let me know how your immunity appointment goes.
I am not interested in litigation or anything like that but I sure would like my life back.

[andrew j]

Hi Nicola,

There seem to be a number of people like you, suffering from adverse reactions to Harvoni or Epclusa - and / or, experiencing post-treatment problems.
The language often used to describe these experiences suggests that the immune system may be struggling to re-adjust itself during, or after treatment.

There is hope, it seems (see threads by Wholefoods (further down this board) - and Rocket Girl (mistakenly posted in the Research section)).
These indicate that it may just be a matter of time (and looking after yourself, of course).

Most people seem to have contacted the FDA and Gilead (the drugs' manufacturer) in the first instance (typically, to have been met with less that ideal responses) - but to otherwise have worked with their Drs. to try to guide their systems back to normal functioning.

(As well as this thread, and the others I've mentioned - you may want to have a look at D63's thread, further down this board).

Hoping this is of some help.

Best wishes,
A.

[Mike Conwell]

Let me tell y'all how bad Harvoni is for me. I wish I had the virus back and or that Gilead would go ahead and get me killed off. I've been sicker since my completion than the virus ever made me. The continue to say no side affects. What a bunch of s$%#. I'm in a post Harvoni support group of many people. We had a close friend pass this week from complications.

[edited by moderators due to language]

[dragonslayer]

To  correct the record for patients contemplating treatment, a small number of Harvoni patients seem to suffer from some significant side effects.. The vast majority suffer no significant side effects.   Patients desiring treatment need to consider the risks vs the rewards, ie, the risk that there is a small chance you will suffer significant side effects vs the  greater than 95% chance of the reward you will receive by being cured....   

Absolutely no medication is free from side effects for all patients.. Harvoni is no different.. However the cure rate is so high and the signiicant side effect potential so low, that most people will avail themselves of the opportunity to get cured of a potentially fatal disease and be happy they did so.

[lporterrn]

For many of us, it is scary to take medication; it is scary to live with hep C. It is especially frightening when some people have bad experiences. Many advances have been made in the field of genetic medicine, and there are now blood tests available to see how we react to certain medications. We aren't there yet with the current hep C drugs, but I do think we will live to see a day when we have a test for most drugs.

That said, we need to figure out how to be compassionate with our members who are having a post-treatment reaction while at the same time not frightening away those who have yet to try it. The majority of us who underwent treatment are living well, and free of hep C, and we don't want to stand between the untreated and their opportunity for a new life. 

[andrew j]

Yes.

For me - I guess it is disappointing that these drugs don't have an absolutely perfect record - as childish as that is.
Many drugs affect some people badly as you say Paul - esp. those that have a serious job of work to do like these drugs.

That said, it must be devastating to enter Tx looking forward to a cure, only to wind up much worse off than you were before.

Mike - I'm so sorry that you are still so unwell.
I had hoped (again childishly) that maybe you had improved or got better with time.
Clearly that's not the case?

The FDA and Gilead need to step up more than they have.
Attempting to deny, minimise or repress information isn't going to do anything for anyone.
There is, as you say Lucinda - nothing to be afraid of.

We need a realistic picture of these drugs, including whatever risks there are.

[Mike Conwell]

I am only one person and I can put anyone in contact with over 200 people with serious side affects from GILEAD's drug. Imagine I'm one person and can get you in contact with so many.

[edited by moderators due to language]

[northfork]

You might try Rhodiola. 100 mg standardized extract once a day. Will help brain fog and energy. Really helped my post treatment joint pain.

[dragonslayer]

Mike, I appreciate that youve had a hard time with post treatment symptoms.. However, you seem to be on a one man mission to scare off anybody who needs treatment, and that is a very dangerous and irresponsible position to be taking.. Youre not just advising people of your symptoms; you are actively trying to keep people from seeking treatment.  How can calling treatment 'poison' be viewed as anything but that?  The fact that you can put people on contact with hundreds with post treatment symptoms is insignificant when there are thousands upon thousands who have had successful cures.   I believe that your right to support ends where you start encroaching on others' rights to be cured.

[lporterrn]

We all have our own experiences. Many of us have been given new lives because of the new hep C drugs, while some have not. Experiences are not debatable. I think we've covered this enough for now, so I am locking this thread.