Heart and lung problems with harvoni

[lolacme]

Hello everyone. I am under a doctor's care trying to find out what's wrong with me. I am interesting in hearing some of the stories any of you might have or know of regarding harvoni related lung and or heart problems. Please share

[gnatcatcher]

lolacme, hepcme had both problems -- see this post:
http://forums.hepmag.com/index.php?topic=2053.msg25976#msg25976
There are probably other relevant posts in that thread; I just happened to see hepcme's post because that thread acquired a new post today.

Hope this helps. Even more, I hope your doctor quickly finds answers and solutions for you.

Gnatty

[CHepCFree]

I too have heart and lung issues.   Scarring of lungs and irregular heartbeat.  I also have tinnitus, onstant headache, fatigue, neuropathy and dizziness.  I am post TX 11 months.    I have a iist of problems people reported to the FDA if you are interested.

[Keithn8eb]

I have many of the same problems you seem to have and  more.  A group that started from this group formed to help each other with problems/side effects that started while on Harvoni and did not cease even after 12 months post treatment. Some of our doctors were leery when we brought our complaints to them, but just too many of us have the exact same problems. We have some doctors talking with each other sharing notes, but this is just in the beginning stages. One thing you should research for yourself - do a Google search on "mitochondrial toxicity". Harvoni works - yes it does work on HepC - on stopping the virus DNA from replicating. However it also works on our human DNA which can cause a myriad of problems, some go away after treatment, some don't. And drug companies nor the FDA test for mitochondrial toxicity.

[Dannymac]

Just finished my 2 month Harvoni treatment the 21st, 4 days ago. Had my first blood work yesterday and again in 3 months. I think I had it for 40 years and this was my first Dr. treatment. I found out about 5 years ago I had Hep C after having a GI Bleed, but the Red Cross told me they couldn't take my blood about 20 years ago but never said the reason why. The last 5 years I have taken Milk Thistle every day and even tried Mesosilver for several weeks to see if it would help as I was having some liver pain. Anyway my Hepatologist said I had low viral loads and not much scarring, go figure I quit drinking 10 years ago and don't do drugs, did in my teens though. So liver is not too damaged. The Harvoni made me feel terrible, moody, edema like I've never had in my feet. Also bad insomnia, depression and severe joint pain mostly in my shoulders which made my sleep even worse. So you can guess my fatigue was bad, haven't got out of my house very much for almost 2 months. My insurance started paying for Harvoni this year and sent me a letter. I'm glad it's over and hope it's cured but unlike some, my side effects really were bad.

[Lynn K]

Hi Dannymac and welcome to the forum

Did they say the cause of your GI bleed 5 years ago?

When you say your hepatologist said not much scarring how did he determine that? Did he say something like F1 or F2 fibrosis?

Anyway congrats on finishing treatment hope you are feeling better soon
Lynn

[Dannymac]

Well I had a liver biopsy and several different ultrasounds including the bloodwork that drained me dry lol. Last year my insurance would not pay because I didn't have enough damage. I guess they wanted you to be half dead before treatment. Nothing like getting your liver to 1/2 functioning instead of preventing the damage before hand huh? Anyway UHC changed the requirement this year on Harvoni and sent me a letter so I called my hepatologist and got started. The GI Bleed was associated with my small bowel and the use of Plavix and ASA and that's when it was confirmed why my liver enzymes were off and that verified my suspicions why I couldn't donate blood for the last 20 or so years. I found this sight looking around just to see if others had symptoms like mine since i was told there should be very little. Here I'm reading all kinds of stuff about cardiac, lung, mitochondria DNA changes and toxicity. Would explain the edema, S.O.B. issues for sure. Will continue to keep my fingers crossed, Feeling a little better since I finished and hope it continues to get better. Thanks for the welcome. Retired medic here and loving it. ;-)

[Lynn K]

OK well I have some edema but that is in my case because of cirrhosis same as for my esophageal varicies I had banded.

Yeah Plavix could definitely be a problem with bleeding. I know I would never be prescribed that not even allowed aspirin or really anything except Tylenol less than 2000 mg per day for pain relief.

I found out also from donating blood back in 1990 but they told me I had hep c so I went to a doctor ended up treating 3 times with interferon based treatment but was a null responder. Finally cured last year finished my 5th treatment for hep c with 24 week of harvoni 15 weeks of ribavirin back in May 2015. Just had my annual blood testing for my regular visit with my hepatologist. At 44 weeks post treatment I am still not detected for hep c.

I never had really anything unexpected from all my prior treatments anemia while treating from ribavirin and general malaise from interferon. The only thing I have are symptoms of liver cirrhosis. No cardiac or lung issues and I have not heard anything about DNA changes or the like.

Glad you were able to get treated before you had serious liver damage. Feel better soon.

[Dannymac]

Thanks Lynn, I know everyone responds differently to medications and wanted to share my experiences. I'm glad you finally got yours cured, sounds like earlier treatments were not so effective. I put off going to a Dr. for over 20 years even though I felt something was wrong, especially if the Red Cross doesn't accept someones blood there's a reason. No vampire turns down  good blood. But healthcare providers are the worst about getting things checked out. I'll update on here if there are changes for the better or worse. Be well.