Harvoni post tx sides

[Imbb]

Good morning.  Found this forum recently when searching for post tx side effects and while I regret that others are struggling with sides I am glad I am not alone.   I have been on the healing well forum for over a year so not without support, this site is more specific to what is going on currently.

It is a bit confusing for me to sort out what sides go with which medicine as I am also in treatment for cancer.  Am blessed to be treating with Keytruda, an immunotherapy that was approved one week after I was diagnosed with stage 4 melanoma last August.  At that time I put the hep c tx, due to start then, on hold in order to treat the cancer.  Have had a remarkable response with keytruda and am tumor free, still have an infusion every three weeks.  Started on harvoni April 10th.

Had very minor sides with the keytruda, not so with Harvoni. Initially felt like I had been hit by a truck, aches and pains and general bad feeling coupled with fatigue and loss of strength.   However, I had been scheduled to treat with interferon and ribavirin, dodged that bullet with my postponement of treatment.  So overall and despite the sides I feel very, very fortunate.

During treatment I could feel that underneath the sides I was getting better.  My brain fog began to clear and my enthusiasm for life began to return.  I'd had no idea how much the hep c had affected me until it was gone.  Even with the aches, some of which are a result of prior injuries, others I attribute to Harvoni as their onset coincided with the start of tx, I feel better than I have felt in years.  The fatigue lingers and I am in the process of learning to live with limitations.  I simply can't do what I used to.  Although frustrating, it is what it is and my only choice is to learn to live with it.  I am encouraged by my reading here, thinking there may still be improvement.  I am only 7 weeks post tx.  So thank you all for sharing. 








1. 7 wk undetected
2. 12 week tx
3. tx naive
4. Genotype 1a
5. F 2-3
6. Varied, 2 to 5.6 million viral load

[gnatcatcher]

Welcome to this Hep C community, lmbb! -looks like you have already been using the forum to find the information that is useful to you.

It's weird that Harvoni hits some people hard and allows others to feel better throughout treatment and beyond. You've got a lot on your plate right now, but fortunately you seem to have the "attitude of gratitude" that is the single best predictor of well-being (http://blogs.scientificamerican.com/beautiful-minds/which-character-strengths-are-most-predictive-of-well-being/).

Every good wish to you,

Gnatty (who has also had cancer, plus a bunch of other major diagnoses)

[atomic dog]

That's great news on your cancer treatment. Hard to sort sides, for sure, but hang in there, rest, eat healthy, exercise (at least walking) and just take it slow. I took Harvoni for 12 weeks and it took a while to start feeling better. I still get frustrated, fatigued etc. That's been a problem at work, but I've noticed improvement. Since studies show that the liver rejuvenates after treatment, I've taken to wondering if my body might be using some of this juice to rebuild liver tissue. Hang in there.

[hepcme]

August 17, 2015

Hepatitis C May Hurt the Heart in Addition to the Liver
 Hepatitis C virus (HCV) is linked with plaque buildup in the arteries, a precursor to cardiovascular disease. Publishing their findings in The Journal of Infectious Diseases, researchers analyzed data on 994 men, 613 of whom were HIV-positive, 70 of whom were coinfected with HIV and HCV, and 17 of whom had only hep C.

After adjusting for various factors, the researchers found that those who had hep C, regardless of HIV status, had a 29 percent greater likelihood of higher coronary artery calcium, a 26 percent greater likelihood of having any plaque buildup, and a 42 percent greater likelihood of having noncalcified plaque.

Additionally, study participants with higher hep C viral loads were 50 percent more likely to have clogged arteries than those who did not have hep C.

“We have strong reason to believe that infection with hepatitis C fuels cardiovascular disease, independent of HIV, and sets the stage for subsequent cardiovascular trouble,” the study’s principal investigator, Eric Seaberg, PhD, an assistant professor of epidemiology at the Johns Hopkins Bloomberg School of Public Health. “We believe our findings are relevant to anyone infected with hepatitis C regardless of HIV status.”

“People infected with hepatitis C are already followed regularly for signs of liver disease, but our findings suggest clinicians who care for them should also assess their overall cardiac risk profile regularly,” study author Wendy Post, MD, MS, a professor of medicine at Johns Hopkins, said in the same release.

To read the press release, click here.

To read the study abstract, click here.

[nancyferguson2812]

I finished my 84 day treatment on Harvoni. I started w/21 million viral load & stage 3 liver disease.  I am still feeling crappy and now have pancreatitis and colitis. I am told it can take 6 mo. to a year for your liver to regenerate, but I feel like a drug strong enough to kill the hepC virus must be causing my distress, SOOOO frustrated that there is seemingly NO support anywhere. Nobody knows nothin'.  I am grateful for harvoni because my quality of life is much better, but I wish I knew what part it played in my current gastro problems, or if they will ever go away.

[Lynn K]

I treated for 24 weeks of Harvoni along with 15 weeks of Ribavirin other than the anemia I had from the Ribavirin which quickly resolved after I stopped taking the meds I felt fine throughout treatment and after. Even being F4 cirrhosis aka ESLD.

Sorry to hear of your difficulties I hope you are working closely with your doctor to resolve your additional health concerns.

Best to you

[hepcme]

STILL FREE that I know of and grateful yet the tinnitis is stronger and worse than ever...It was gone at the 5&6 mo post and I was so happy for it !!!  now it is back with a loudness as never before ..thought it was from swimming along with the vertigo...I find myself grabbing at the walls with any quick movement...still itching in palms...I am not as bloated when I eat but have to watch size portions...I found aloe vera juice before eating helps....the aches and pains still come and go sometimes worse than other tmes especially in shoulders and arms now new one is in the back.I take a detox tea to clear bowels and toxins , seems to help..thank God the heart palps are gone and chest pains but sometimes feel a brief wave of heart issues...I take ACV with diluted apple jc to try to keep the plague build up down they are saying is symptomatic of HCV  or meds ...who knows ...who is going to admit  but is now being FDA released as posted

[KimInTheForest]

I finished my 84 day treatment on Harvoni. I started w/21 million viral load & stage 3 liver disease.  I am still feeling crappy and now have pancreatitis and colitis. I am told it can take 6 mo. to a year for your liver to regenerate, but I feel like a drug strong enough to kill the hepC virus must be causing my distress, SOOOO frustrated that there is seemingly NO support anywhere. Nobody knows nothin'.  I am grateful for harvoni because my quality of life is much better, but I wish I knew what part it played in my current gastro problems, or if they will ever go away.

Hi Nancy. Welcome to the forums! Sorry to hear about your post-treatment problems. How long has it been since you finished treatment? I think a lot of things just take time. The body is adjusting to being rid of virus, and adjusting to (or undoing) whatever changes the drugs themselves may have brought about besides clearing the virus. I am 5 weeks post-treatment and just finally got my appetite back a week ago. Appetite suppression was a major side effect for me throughout treatment and then beyond treatment. Now that appetite is back and I can eat normally again, I hope my strength will soon return and my fatigue will subside. I am also still anemic from the ribavirin (or I was at 4 weeks post treatment).

best to you!
kim

[hepcme]

I am 7 mo post TX  on 8week tx of Harvoni...finished Feb1st...I believe it will take time to get all aligned and adjustment..this fatigue is the hang up...but maybe it is good so body can catch up...I am a go girl and don't rest so this is good for me...I come alive around 4pm...just strange...
I just had a wave of short breath and chest pain and it is gone...I took some iodine drops for thyroid  hoping to help thyroid...I don't eat seaweed...leave that for the fish