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Avatar universal

new meds., side effects, and results...

Hi Everyone,  
I have been around here before, in nad out....haven't treated yet, my blood test #s just went up a bit , testing yearly.
Wondering how people are making out with Harvoni, side effects and after, relapses?
Any info will be helpful. I have to decide pretty soon to do it. I have been ducking the ball for awhile now.

thank you all.
15 Responses
317787 tn?1473358451
Hi I'm sorry, I guess this site isn't as active as it once was.  There are many people who have used Harvoni and are now cured.  I think the difference between post Harvoni vs Post Interferon is that people had side effects after interferon so they tended to stay and help others as they had been helped.  With Harvoni, most get well and move on.
1 Comments
Thank you Dee, I appreciate your reply.  I think you are right about  that! Glad to hear that people are getting cured!  I am wondering how people are faring after awhile too... Did you take Harvoni?
317787 tn?1473358451
Hi I didn't take Harvoni but many many other people did.  The most I have seen is a head ache, upping water helped some.  I am sure others who have treated with Harvoni will be along soon :)
Another thing you can try is to go to the top of the page and search with the magnifying glass icon.  Click on that, then enter Harvoni.  I think you will find quite a bit of information
Good luck!
Dee
1 Comments
Thank you Dee!
317787 tn?1473358451
I found over 700 posts, again, good luck to you.
http://www.medhelp.org/forums/search/75?utf8=%E2%9C%93&query=Harvoni
549363 tn?1230667686
Hi, I'm a Harvoni cure.... I was undetectable since week 8 of 12 and now at 20 wks post treatment. I was a tough case due to damage ( f 4 ) and having had the virus (1A ) for over 50 yrs.  The worst side effect for me was loss of energy from about week 6 of treatment to wk 12 post treatment... Read my journal for more.... My specialist informed me in Feb. (wk 12 SVR) that there were 0 relapses from week 12 that he knew of to date.(there are stories of reinfection so once i had svr I threw out my toothbrush and old contact lenses and started fresh. There are many short term side effects that last a week or so and then pass one after another but thats my experiance and I was always sensitive to all medications. Once more read my journal... It was all worth it!!! I feel better than I have in years... PS smokers have a harder time clearing the virus so quit now if you smoke or cut down to 2-3 a day.... Don't put it off any longer. It's nice to "not know" what you will die from..... Good luck to all and take your medication religiously until it is finished. God Bless !

1 Comments
thank you Hepcat7!!
Avatar universal
It looks like you have been a member since 2007, is that when you were diagnosed? How long do you think you have had HCV?

I am not up to date on possible new meds, are there some on the horizon, and that is what you are waiting for? What does your doctor advise that you do?

When was your last biopsy?

Sorry, lots of questions. :)  I just hate to see you wait until you have cirrhosis.

Faith
1 Comments
thank you Faith,  yes found it in 07. have had 2 biopsy's, 07 and 2013. last one said stage 1 grade 1 . Last blood test a few weeks ago, alt 101 ast 60, vl. 9 mill.  
I have appt. for second opinion on Friday, to see if I can wait  or not.
Just a bit nervous since the drugs are still so new.
Avatar universal
I had type 1a and found out in 2013.  Just a few months after finding out, I started the Interferon treatment.  I was undetectable a little while after starting.  Then, the virus showed up again.  I ended up being on treatment for 24 weeks and was never cured.  In December of 2014, I started Harvoni.  This is a miracle drug in my opinion.  The only side effect was a mild head ache.  This was such a relief from the slew of side effects of interferon treatment.  I am now "cured" of hep C and have been off of Harvoni since May.  I do have long term side effects from the triple treatment.  The main one that I notice is my mind will go blank quite a bit.  
I
1 Comments
Lnc33, so glad it has worked for you, and feel for all who had to go through all of the tx.   Thank you for your reply.
Avatar universal
So wonderful to hear that Harvoni worked for you, what a blessing this drug has been. When I did my tx with just (SOC) interferon and ribavirin, I'd read the posts from those on triple tx and it made me shut up about my side effects. Mine were bad, but the triple tx had so many more horrible ones, and some were doing it for 48 weeks, etc.

I did my tx in a clinical trial, I got the group with the SOC, the other group got the experimental one which eventually led to the newer drugs being approved by the FDA. The test staff seemed to feel bad I got the old stuff (it was determined by a coin toss), but I was kind of glad I got the tried and true stuff. The other group did just as well with far less side effects. I, too, have long terms side effects, but I'm still just grateful to be SVR after three years.
1 Comments
glad to hear that you beat this thing!
317787 tn?1473358451
This is a wonderful report!  I am so very happy for you.  Congratulations!
317787 tn?1473358451
You are so welcome.  I knew others would come.  Like I said I have known many who have treated with Harvoni.  They aren't here any more which is a good thing, a real testament to the value of the new drug.  It is nothing like the Incivek, Interferon, Riba, from what I have heard anyway.
I have heard from people who did both, were cured from Harvoni and it was a walk in the park in comparison.  So far, headache and being tired is what I have heard.  I will take that over the other tx every day of the week.
I hope you can get tx soon.  I have a friend right now who is dying of HCV Cirrhosis.  He just will not get the right doctor.  He is swollen, yellow, urine the color of root beer.  He is having trouble breathing due to all the fluid.  The hospital could not withdraw the fluid this last time.  In addition he has gone to the ER 7 times in a month.  I have tried to help him for over two years.  I guess I will have to distance with love.
Take Care
1 Comments
Hi Dee, so sorry about your friend. My dad died that same way. But cirrhosis form drinking.
It was awful.  I am going to try to line it up soon. Going to a new Dr. this Friday.
317787 tn?1473358451
Again, I am happy to see others have responded.  When I came on this morning your post from last year was right above this one.  There are 31 answers, they may be good answers as well

http://www.medhelp.org/posts/Hepatitis-C/side-effects-of-new-tx/show/2505766

Another place to look for people who have treated with Harvoni is Lucinda Porter.  She is a nurse who has a site.

As someone said above; please don't wait until you have cirrhosis.  It is very difficult to treat with cirrhosis.  I have cirrhosis, my doctor wasn't even sure I could be treated.  I insisted, he treated.  I used Incivek, Inf, Riba.  I could not work.  I could barely get out of bed.  I have now been cured for 4 years.  My health improves every year.  I was told in 2007 that if I did not get rid of HCV I would need a liver transplant in 5 to 10 years.  I have a friend who did not get cured.  He is now dying of end stage liver disease.
I hope you are seeing a hepatologist who is monitoring you very carefully.

Despite the fact that I am cured, every 6 months I have blood work and an US to check for liver cancer.
My best to you
Dee
1 Comments
Thank you Dee. Prayers for your friend.
Avatar universal
I was a 1a with no cirrhosis, and I had hep c for over 25 years. I did all the treatments including Incivek with no luck.  Finally last June I reached SVR 12 from Harvoni.  Initially the only side effect was a mild headache, but I adjusted my diet to be less sugary with more vegetables, and more water and I was fine. Since then I have felt no weird side effects.  It's a miracle drug. I would start working on getting into a treatment soon though, because getting into a treatment seems to be the hard part. Best of luck to you.
2 Comments
Thank you 48 weeks!!!  I appreciate everyones responses!!! Congratulations !!!!
Thank you 48 weeks!!!  I appreciate everyones responses!!! Congratulations !!!!
17919786 tn?1461404324
Hi, now I am taking Harvoni (generic one from India) and there is very few side effects. The main side effects are feeling weakness and headache. Hopefully I would be from the disease soon. Finger cross!!!!!
2 Comments
If you see thai now mka, how are you doing ?
I meant "this"  not "thai"
18030201 tn?1462503386
Hi l have had Hep c for 20yrs. Gen 1A, with cirrhosis.

I have had Interferon - Ribavirin treatment 52wks, followed by a Interferon - Ribavirin plus a third drug(can't remember name)which was by far the worst. Both treatments caused me considerable side affects some which have become permanent. The last treatment was horrendous but l sure you have heard it all before.  I have just recently started on Harvoni and l was dreading the side effects, to my surprise l feel just fine. I have continued to work fulltime and go about my life pretty well unaffected. Maybe a little more fatigue than usual but thats all. So far so good. I have had my first review and test results are looking better, Dr. expects virus load to be zero by next test.

Ray, Australia
1 Comments
That's good news Ray, best wishes for you, how are you doing  today?
Avatar universal
what is upvoted for? I pushed it accidentally on my own post.
444337 tn?1428073510
12 weeks of Harvoni was a proverbial walk in the park for me. I actually felt better on treatment than I'd felt in years. Cured me, too.

Do not duck the ball any longer, there is nothing to worry about.
1 Comments
Geez, I can't believe I commented on a thread from April...What a newb!
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