Life after olysio and sovaldi treatment

[rubysky]

I am very perplexed.  I finished 12 wks of the combo sovàldi and olysio with undetectable still at 12 wks.  However, since stopping I am weak as a newborn, ache all over and cant do anything.  Thinking is even difficult. From what others say I should feel good.  Any ideas? Anyone?  

[DeeDee0327]

Hi Mary. So glad to hear that you are going to get your TSH levels checked.It's astounding to me to hear of how many people still struggle with fatigue following treatment. I would also encourage you to have other markers measured like B12 and folic acid. While the treatment does eradicate the virus (hopefully) it seems to also deplete our bodies of essential ingredients that lend to feeling well. Let me know how your tests turn out. Also, I don't know if you've considered Armour thyroid, but this med treats T3 as well as TSH. You may want to have a discussion with you PCP/Endo about it. Thanks for the post. Dee Dee

[Mmorgan854]

Hi, thanks so much for bringing the thyroid issue up.  About 6 yrs ago I had a thyroidectomy due to tumors (benign) on both lobes. I was told by surgeon to always take synthroid ( brand) an not levothyroxine. In January, my new PCP switched to generic ( levo)  even though I told him endocrinologist said otherwise.  I'm about 2 wks. Post tx. On sol/RIBA . I'm on 200 mcg. Which I think is a high dose, an now I'm wondering if my thyroid levels are out of wack because of EXTREME fatigue off an on.  One day,a little energy, the next, down for the day.  Maybe this is not related to treatment, I'm hoping. Wondering if the change from brand to generic in Jan. Then starting treatment in june has something to do with it.  I will be getting TSH checked ASAP.  thanks for the insight an sharing.   Take care.  Mary

[DeeDee0327]

Thank you so much for the reply. It is encouraging (and sad) that so many people feel unwell following treatment. I had such high hopes! I would strongly encourage you to have your thyroid levels checked. It seems to me that this treatment wreaks havoc on the endocrinology system. Again, thank you so much for your reply! Have a blessed day.

[Sovaldi13Newbie]

Please don't feel alone, going on 2 months and a few weeks and I still feel yucky. I became a little deconditioned on treatment (did a lot of lying around) so now I'm trying to take longer and longer walks to get my stamina back up but I feel pretty out of it some days and still feel like I'm in the withdrawal stage. I wish I was one of those lucky ones who felt better a month or two months out but I have to be patients, considering all I've been through I guess I'm doing okay. But NO WAY do I feel as well as I did before I started this treatment. Guess with some of us it just takes more time. Tomorrow I'm going to ask for them to check my thyroid, but I realize that with some people meds, even for just 3 months as compared to a year...Is still going to be debilitating. I was still undetected on my last draw so maybe I'm FINALLY going to beat Hep C, and that's a lot. I try to keep telling myself that.

I also think it threw my hormones out of whack and am going to see my gyno soon. But then I see the people who have gone on with this disease to end stage and transplant, and I tell myself I should feel lucky. Perhaps  some of your conditions will level out over time?, I'm so wishing this for you. I've seen this happen with people. The insomnia and hot flashes (night sweats) it's hard, I realize. But that is better than having your liver
go, because once that's goes, you need a transplant. Just my own thoughts. Be well and thanks so much for this thread!

[DeeDee0327]

Finished Sovaldi/Ribavirin on May 10th. Felt terrible during treatment and continue to feel terrible 4 months later. Several weeks after treatment I continued to have pain in liver region. Had CT and was told I had gallstones. Had my gallbladder removed and liver biopsy. Biopsy showed mild fibrosis. Following the surgery I still felt terrible! Another CT was performed and they found fluid around my liver and a lesion.Was subsequently hospitalized for 3 days. They thought I might have a bile duct blockage following gallbladder surgery but found no evidence of blockage. No explanation for fluid around my liver. Saw GI doctor again for persistent pain and fullness in abdomen and he ordered an endoscopy and gastric emptying study which came back "delayed." Endoscopy showed inflammation in various parts of my gut that still hurt.. Now I have a diagnosis of gastroparesis. Changed my diet and still feel terrible!  Finally saw my PCP and suggested he check my thyroid levels as I have hypothyroidism. I can't believe that it didn't occur to my GI Dr. to check my thyroid levels, especially since hypothyroidism is a common indicator of motility issues (gastroparesies.) Sure enough, my TSH and T3 were off the charts! I have no doubt that the Hep C treatment destroyed my thyroid, which in turn caused the gastroparesis. Saw a endocrinologist and they increased my thyroid med drastically. Switched me from levothyroxine to Armour and I am having problems with insomnia and extreme hot flashes. I'm sure my thyroid is freaking out from being so depleted to being overdosed with thyroid hormone. My Eosinophils are high and I noticed that that is common with many people that posted.  Most recently I have a burning sensation in right lung. Still feeling terrible. I wonder if I will ever feel better. At this point I really regret doing the treatment and would discourage anybody doing treatment unless they were having serious symptoms! Felt so much better before I started this journey!  

[AppalachianWoman]

I am one of the rare people born with HepC.  3 years ago I was "pronounced" and had two months to get a transplant due to autoimmune hep deciding to appear - it is believed due to the stress of a gall bladder removal.  Went through the battery of tests - got on the transplant list and, lo and behold, the HepC and autoimmune finished their battle (not without leaving me with 1/5 operational liver).  Then I started getting a little better.  Two month moved to three, three to four.    Treated the autoimmune briefly since treatment for autoimmune may let hepC flourish (which it did) however, the cocktail is not an option for my level of autoimmune hep.

Treatment is a hard decision to make.  You may be right, we are the forerunners of a new protocol.  It is the risk you take.  Having HepC is also a risk.  The decision is yours, but progressive liver disease is just that, progressive.