I acquired HCV in 1984 and was diagnosed with cirrhosis in 2004. My third treatment, triple tx with Incivek, was completed in 2012 and I achieved SVR. My hepatologist informs me that while most fibrotic livers can slowly regenerate themselves after eliminating the virus, a cirrhotic liver is less able to do this. He said it will slowly "remodel " itself into a healthier form but will never fully regenerate. It would be nice to have it go back to being the liver it was before HCV but I'm still quite happy knowing that it will at least be steadily moving in the right (healthier) direction now.
I am most definitely doing better since achieving SVR. Life has ups and downs, especially since I'm 60 and have numerous other medical issues, so it was difficult to see the improvement at first, until I could view things with the perspective afforded by time. During my first year post-SVR the recovery was slow in general and seemingly non-existent in terms of the fatigue and its partner, brain fog. I gradually became convinced that the fatigue was a permanent side effect of the cirrhosis - even though my hepatologist told me I should still look elsewhere for the cause.
Just last month my extremely sharp PCP interrogated me about my sleep quality and became suspicious of a possible sleep disorder, as I have for years been awakened by hip pain in whichever side I am lying on. I roll over and fall back to sleep for a while until that side wakes me up, then I roll back to the first and this goes on all night. I didn't find it troubling enough to even mention it to my doctors because I always fall right back to sleep, but apparently it was preventing me from getting the needed deep sleep. Steroid shots into the trochanter bursa on each side did absolute miracles for my fatigue. This hasn't been a permanent solution and I'm still working on the problem but the encouraging thing is that the fatigue really is a separate and potentially curable problem, not an untreatable effect of incurable cirrhosis. Now I want to encourage all those with lingering problems after SVR to not give up, and to keep looking in lots of directions for other possible causes and solutions.
Hi Nan-I couldn't find you because I was looking for you at a different forum page(called Delphi).On my phone you asked me to keep you updated and I would be happy to.I have been on every protocol there has been starting in the 80s with just interferon up to my last one which was incivek with peg and ribo.I am a lifetime non responder and on incivek I actually got my viral load down to 160 only to see it go back up at the next bloodwork.After 3 months if you havnt cleared they stop you which brings me to now.I just started Sovaldi and Olysi and I must tell you I am a little bitter.There are no side effects at all with these.I am going to the gym,I have energy,I am pleasant and Im not even dehydrated,I mean nothing.When I think back to the torture and terror that I went through with first the interferon and the peg and ribo and the anemia always being there I get mad.The Sovaldi-Olysi combo came from the aids people and have been making the HIV community better all along so they figured if its helping them why can't it help us.I think I am very fortunate these drugs were finally made available to us as this was probably my last chance to keep my liver.Here in NJ the transplant list is very long and you may not get a second chance.I am only in my first week with this combo but I feel completely normal and havnt even had a headache.I will let you know what the first bloodwork brings when I get the results.I put this page in my favorites so I can find you(I'm not what you would call computer savvy).Good luck to you Nan,I will be in touch- Glen
Happy to hear you are doing well in your first week of treatment with the Sovaldi/Olysi combo. My husband is doing pretty well on the Sovaldi/Ribavirin (24 wks) treatment also - Day 16. Lab work shows improvement in all liver enzymes. I understand completely how you feel (being mad) about the prior treatment. It was absolutely horrible for my husband as well. Nothing we can do about that now. Let's just be grateful
that this new medicine (Sovaldi) is here at last and will be the answer (in combo with other drugs) for many in finally getting rid of this virus.
I know what you mean about NJ having a long transplant list. We're in NYC and my husband had to go to NC for his transplant.
My best wishes for you to never need a transplant but if you do, you may want to look into that option. I'de happy to give you helpful info in that regard if you ever need it.
Wishing you all the best in your continuing treatment.
Thank you Nan
I have 2 questions-did your husband clear on his two week bloodwork and the other is you said he will be on this combo for 24 weeks.I didn't know they did it for 6 months,I thought it was just 12 weeks.Are you better off doing it for the 24 weeks?I hope your husband does great
Still waiting for the viral load results. Should have it later today or by Monday.
Since my husband is geno1a and interferon ineligible, his doctor was able to put him on Sobaldi/Ribavirin for 24 weeks as per the prescribing information:
"SOVALDI in combination with ribavirin for 24 weeks can be considered for CHC patients with genotype 1 infection who are interferon ineligible. (2.1)"
I don't know if he is better off but if it means he will be cured, he will do whatever it takes. God willing he will be SVR by the Fall. Wouldn't that be great!
Since my husband is post-transplant with cirrhosis of the new liver as a result of billary tree blockages along with recurrent aggressive hep C, I don't think they even considered going off label for him.
Instead they went with a treatment that was actually tried on post transplant patients with some success (see this link and video)
Say hi to your Mom - I'm from Brooklyn - born and raised :-)
Wishing you a quick approval and a successful treatment. Consider yourself lucky - no Incivik. Awful stuff.
Great news! We got his result today for the 2 week HCV RNA Quantitative Test. Baseline on 2/7/14 was 582,497. Started treatment (solvaldi + ribavirin 24 weeks) on 2/13/14. Test on 2/27/14 shows viral load now at 250.
Amazing results. Dr expects he will be undetected at 4 weeks test.
I was a little worried since the Ribavirin dosage was kept to 400 mg because of his anemia. So we couldn't be happier with such a great result in two weeks time on these meds.
He is very fatigued and still having bouts of HE after the procrit shot each week, so its hard. This result gives us both much needed hope things will improve in time.
Thanks for the support.
Triple Yah-o-o-o :-)
Thank you all for your continued help, advice, cheerleading etc. Since the 2nd denial from Blue Shield ( think we should name ins co) my husband's Doctor wants him to start Soli/Rib 24 weeks now.
We were told last year at this time about the combo of Sovaldi & Olysio tx. Doctor asked us to try and wait he knew then the importance of these Drugs. Wait we've done and then to be denied is a kick in the stomach. The Hep does believe that the 1 pill Soli with ledipasvir will be ok'd in the Fall.
In our case my husband can No longer wait. We need to get his Viral Load down. Will pray the 2 pill combo of Solo w Riba works so well he'll becomes undetected
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