Hepatitis Forums
Hepatitis C Main Forums => On Hepatitis C Treatment => Topic started by: worriedsilly on September 26, 2012, 10:22:39 am
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I keep reading about new hepc drugs failing. Is there still hope for new drugs with less side effects being availabe in the next year or two? I'm getting close to needing treatment and these failures are starting to freak me out.
Vertex ends work on one hepatitis C drug, continues another
http://ca.news.yahoo.com/vertex-ends-one-hepatitis-c-drug-continues-another-175205100--finance.html
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I thought these new classes were going to bring a bright new day to hep treatment. seems like they are all failing. this can't be good.
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One very important thing to remember is that the hepatitis C drug pipeline is very full with experimental agents and, just as has been the case with other infectious diseases (e.g., HIV), there will always be drugs that don't pan out because of limited effectiveness and safety concerns.
But yes, it does appear as if some of nucleoside/nucleotide polymerase inhibitors have been plagued by safety concerns. Fortunately, though, one of the agents that many are excited about -- Gilead's sofosbuvin (GS-7977) -- showed tremendous potential (with minimal side effects) in early studies and is now in the final stretch of studies needed for approval.
Also keep in mind, there are several other classes of drugs in Phase II and Phase III studies, including at least five NS5a inhibitors, ten protease inhibitors and seven non-nucleoside polymerase inhibitors.
There's a lot of potential in the hep C pipeline!
Tim Horn
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Thanks Tim.
I'll keep holding out hope something new will be available in time.
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Please don't be in a rush to try something new. That makes us guinea pigs. I, unfortunately, jumped on the Harvoni band wagon and was very healthy prior to taking it. I am 3 months post TX and have ringing in my ears, headache, dizziness, diminished lung function and we are still trying to figure out what damage has been done to my heart. After researching and communicating with the FDA, they have no real responsibility to report side effects until 18 months after release of the drug. If you can wait to see what the drug REALLY does..... please do.
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I guess jumping on the band wagon depends sometimes on what condition and stage you are at this time and a lot of people have had virus 30 years so the choices we have to make are changes yes are right we are guinea pigs I hope that long term sx are not major ones like the old meds and it's a concern for anyone who does have long term sx with new drugs like harvoni good luck to all!
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CHepCFree, can you share more about your experience? Were you taking only Harvoni, or were there other drugs like Ribavirin in your prescription? Genotype? I gather you were treatment naive prior to taking the Harvoni? Appreciate hearing any insights you can offer.
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Hi, I was diagnosed in 1995 and probably have had it for 35 years. I was treatment naïve with biopsy showing F3-F4 in 2000 an a Fibroscan showing F0-F1 in 2015. I had been using the alpha lipoic acid alternative treatment for a number of year and my liver enzymes were usually normal. I had not other health issues. My treatment started with ringing in the ears starting the first week. My blood pressure went up. I was fatigued. I had other slight side effects throughout but nothing horrible. When I stopped Harvoni is when things went to hell. The ringing has not stopped, I have a constant headache with dizziness. I had severe chest pain and could not breath. My heart began to have horrible palpitations. I have been to a heart doctor and lung doctor. I have 20% loss of function in my lungs and they are still trying to figure out what has happened to my heart. Again...I was in perfect health before Harvoni. I have been in communication with others that have experienced the same thing. I have reported this to Gilead and FDA. The FDA has no responsibility to report post marketing issues until 18 months after release. So all that we report....unless we share here....will never be known for at least another year. It troubles me that so many people be injured as a result. Because I was in such good health I now wish I had waited to hear the problems before jumping on the bandwagon. Too late for me. Lesson learned but I may be permanently damaged with diminished quality of life. Be forewarned.
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Yes I was treatment naive hcv 30 years , breast cancer 20 yrs ago found hep c during chemo and radiation liver numbers didn't like that stuff so they tested for hep c which was just coming to light about that time I have hasimotos autoimmune thyroid disease which can be a reaction to hep I have been achey on and off for along time liver numbers have been elevaded for 20 years they went to normal 2 wks after on harvoni I have had 2 ultrasound s which show mild fatty liver with borderline enlargement as far as treatment I have had some achey joints and muscles during last 2 weeks of treatment and 2 weeks after ,now feeling good best I have felt in a long time but my antI thyroid antibodies are high undetected 4,8 and 12 now waiting for svr end of july
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If anyone want the 200+page report of side effects being reported, just send me a message and I will send to the e-mail address you provide. I cannot upload it here. I have sent it to Lucinda, the global moderator, and not sure what she intend to do with it but it will be quite some time before we hear the truth from the FDA.
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Hepcfree when did you start treatment and how long were you treatment are your doctor s saying anything about it all being autoimmune stuff now going on
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I was on a 12 week and am now 13 weeks post tx. My doctor has been almost non-existent during my treatment and has been less than helpful post treatment. He has basically said.....it is too new....go see your PCP. I did just get my SVR 12 and I am cured but it is very bitter sweet since I am now having such difficulty.
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Just wanted to add everyones experiences are different I treated 3 times with interferon based treatments including on that was a clinical trial with an experimental drug I was a null responder. I also treated with Sovaldi and Olysio last year for 12 weeks and relapsed 12 weeks post EOT. I treated this year for 24 weeks of Harvoni and 15 weeks of ribavirin and other than the "flu like symptoms" of interferon and feeling run down due to anemia induced by the ribavirin I did ok on the old treatments thought I won't say there weren't tough to do.
And I have no lingering side effects from any of it the only thing I have is cirrhosis for 7 years from my hep c which I just found out today I am SVR 4.
Just because some people unfortunately have a hard time with these medicines including lingering problems later does not mean you will.
And the consequences of developing advanced liver disease like cirrhosis aka end stage liver disease are life altering and eventually can be life ending.
Treating hep c was a risk I was always willing to take
good luck to all hope those of you with post treatment issues can find relief soon
In health
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I have heard a few with lung infections but not a lot has a biopsy of lung been suggested
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posted by CHepCFree:
Too late for me. Lesson learned but I may be permanently damaged with diminished quality of life.
CHepCFree, I appreciate the fact that you've taken the time and made the effort to share your cautions in spite of what you've had to endure. Hope that your sides will diminish or even disappear. I'm considering Harvoni treatment too.
I'm curious about some other things like your age, gender, history of potential pulmonary health compromising exposures (smoking, work with harmful particulates or vapors...). I gather you have no prior history of heart palpitations or other cardiac problems?
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Seekir - I am a 65 year old female with no smoking or harmful vapor history. I have no genetic link to any lung issues. My heart was just checked a couple of years ago and no issues. I eat healthy and exercise regularly. If you read about meds in general, you will see there is potential for lung damage with many and why that it. You may also have noted that rats experienced heart degeneration in Harvoni tests but they said it was unlikely that humans would experience this. I know there are many who have made it through treatment unscathed and am so happy for them. I only want people to know there is potential for things to go wrong. I am communicating with someone in Tucson and she is also have breathing and heart issues and have read on this blog of others having heart palpitations.
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Again, I appreciate your post CHepCFree. Thanks for the new additional info you've provided. I've had unpleasant experiences of my own with pharmaceuticals in the past. I'd prefer not to have more in the future. It's disappointing to learn that you and others seem to be having unanticipated side effects and that Harvoni may not be the perfect solution many of us are hoping it will be, but I'd prefer to be informed about any negative side effects rather than blissfully unaware.
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You are welcome. That is my point. This is real. Medications change the body and I've found the whole approval process by the FDA and their responsibility to inform the public about problems needs improvement I don't mean to be negative, but just wanted to share reality. Damage can and has happened as a result of this medication. Gilead's current advertisement about Harvoni is misleading. Best Wishes!
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I'm not leaping to any conclusions about the benefits of Harvoni, but from what I hear the FDA's powers have been considerably diminished in recent decades by lobbyists and legislators who may perceive it to be an obstacle to their aims.
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All my labs were awful - F4 A3 Lft's high, but I was asymptomatic. I developed joint and muscle pain during Harvoni treatment and now at 3 months EOT, I am still having lots of problems with "reactive arthritis". Yes, I feel like a guinea pig!
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Sorry to hear this has been so rough on you.
Did you know previously you are F4 cirrhosis? How high are your liver tests? Are you HCV not detected?
Best wishes
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Wow sorry to hear some people are having issues with Harvoni. For me it was a good experience, I was prescribed 12 weeks and had barely any side affects. The most I had was a slight headache just for the first couple days and felt a little more tired than usual but that was it. Post treatment I felt great. Seems some people do well while others have issues. I think with any medication there are risks. Not taking the chance to cure yourself also comes with risks given the seriousness of diseases such as Hep c. When you are fighting a deadly disease that is the chance you take. The drug companies should post all possible side effects after other causes have been eliminated.
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...I think with any medication there are risks. Not taking the chance to cure yourself also comes with risks...
Rock and a hard place as they say. I'm grateful to the Harvoni veterans who're sharing their stories with those of us who are considering the treatment. There seem to be quite a range of experiences. It seems odd that there isn't more consistency. I wish it were simpler to be sure which reactions/symptoms are due exclusively to the drug.
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I am now 3 months post Harvoni and just had my 2nd set of blood tests which were all good! I am still undetected and liver enzymes are normal. I WAS 1b with an F3 score treatment naive so I am grateful for this drug as the side effects were minimal for me headaches and fatigue and a bit of brain fog I really didn't know how bad I felt with the Hep C until I started feeling good! My energy level has returned and am able to walk 5 miles a day as before I was lucky to even get through a work day. I feel so blessed at this second chance at life. I took the risk of trying Harvoni for 12 weeks and I am glad I did! Good luck to all of you who are starting on your journey. Remember, untreated Hep C will eventually kill you so why not take a chance what do you really have to lose?
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I have also been told that if you reach the point where you need a liver transplant, you have to go through the "cure" first. Transplant will not be done unless you are undetectable for the virus. I am so sorry to hear about these horrible side effects. I am on vpak&riba - 5th week of 12 week treatment - no really bad side effects yet but who knows what the future brings.
Best to all!
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Posted by Tutu
...untreated Hep C will eventually kill you so why not take a chance what do you really have to lose?
Possibly a great deal if you read the posts from those who attribute serious health issues to the drug like CHepCFree. There is reason to think that waiting for a better drug regime may make sense, especially for those of us whose symptoms are not at a critical stage. A great deal of research is ongoing, and treatment options are being actively explored. I expect there is much to learn about Harvoni's long term effects, the drug has not been on the market for long, and patients who've used it have only recently finished treatment.
For myself and others like me, I hope that there will be few harmful consequences from Harvoni treatment, and that the list of anecdotal bad experiences patients cite will prove to be a consequence of something other than the drug. I would like to be free of the virus, and I much prefer to believe positive news about Harvoni's efficacy and safety. But I'm afraid the jury is still out.
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Tutu I agree with you totally if anyone can wait to get treated then it's probably good to wait and depending on the length of time someone has been infected. I being 60 yrs old I have things that do come with age and being infected for 30 plus years it takes a toll on my body so I took the chance with harvoni I hope it was right decision any new drug that comes down the pike will have to go through the test of time
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Koifish, I may have confused you with my attempt to attribute my quote of Tutu's post to her (I assume Tutu's gender is female?). She apparently had great results with Harvoni.
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Sorry wrote wrong name
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I have also been told that if you reach the point where you need a liver transplant, you have to go through the "cure" first. Transplant will not be done unless you are undetectable for the virus. I am so sorry to hear about these horrible side effects. I am on vpak&riba - 5th week of 12 week treatment - no really bad side effects yet but who knows what the future brings.
Best to all!
People who have hep c and are on the transplant list are eligible for transplant and can and have been transplanted recently they will treat the hep c post transplant and actually with a liver that does not have cirrhosis are more likely to cure post transplant vs when they had extremely advanced liver disease.
There is actually a debate on the subject about not treating for hep c the group on patients very close to transplant the concern is that they would improve and be placed lower on the transplant list and have a poor quality of life and at that point treating a patient like that is not doing them any favors the question arises in which patients who are in the early stages of needing a transplant to treat hep c to avoid transplant and hope they improve enough to have a good quality of live or treat them after transplant where the odds of cure are better and the end result is a healthier patient who must deal with the effects of having had a liver transplant for the rest of their life