Share the symptoms you experienced after being cured
Hopefully, you took our poll- and landed on this forum topic. But we'd love to hear symptoms you experienced after being cured of Hep C.
It's been almost 3 years since I was "cured"in the summer of 2016. I actually had no viral load after just 2 weeks but I had to complete the 12 week program. I took Zepatier @ 1 pill everyday and never even knew I was taking a powerful medicine. I had mild to moderate liver damage which will never really go away but it won't get worse from my prior Hep C. My liver will only get worse by something I choose to do, like drinking, etc. (This all according to my doctor). I have long term issues with my platelets and my white blood count which can go pretty low and then go up towards normal. I also have severe fatigue and every joint in my body aches on to many days. These last 2 symptoms may or may not be related to ongoing Hep C issues and I don't know if I ever will know for sure because I have a few other things going on with my health. Well, Good Luck to all on this shared journey of trying to stay well enough.
Ugh... I have been cured for only a few months, but my platelets are "steady" in the low 50s and my WBC is low. I was hoping for a quick rebound but it sounds like that's not going to happen. Since my recovery, I've had joint pain in my hands and left elbow and now starting to have more edema in my feet and sometimes pretty dehydrated. Hard to know what's a side effect and what's just some other problem waiting to be discovered.
Hello Paree. I am so glad you are cured. I am wondering if you know the stage of your liver disease before you were cured? Platelets and white count are often low in late stage disease. Of course there are other reasons that may be causing these abnormalities as you have stated. Your story echoes mine quite closely. I was cured in 2013 after years of living with stage 4 liver disease (cirrhosis) from decades of fighting the virus. My platelets and WBC never fully recovered. You have to remember that just because the virus is gone, the liver is still damaged. A rheumatologist was able to help me with my continuing joint pain. My best suggestion is to have a chat with the doctor who treated you and see what they suggest. Sometimes these symptoms are caused by your body fighting a virus for a very long time. I hope you can find some relief. Please let us know if you find out what your doc thinks is going on. Stay safe. ~ Sue, Community Moderator
I have had trouble with my veins in legs and swelling ankles. I could only get 40% improvement from procedure that was done to help. My knees are bone on bone. I have compressed disc L3 and L4, in spine and Osteoarthritis arthritis. My teeth have been horrible problem. I had very few cavities before treatment since treatment many crowns. I was given blood transfusion in 83, diagnosed with Hep C in 03 after seeing many doctors thru the years with fybromyalgia diagnosis, constant joint and back pain. I had 48 week Pegasys/copegus treatment starting in 03 and it came back after 6 months. Then in 07 I did Interferon at highest dose combined with 6 Ribivarin pills for 72 weeks. I have tested as cured every time checked after the second treatment. There is not a day I don't have pain. I have been told I still have Non Alcoholic fatty liver disease but have not been able to lose weight. I have been told weight loss is only treatment. I only see gastrointologist now for colonoscopy check ups. I have tried stem cell, PMR, PRP, PT for knees did not work. I'm looking at knee replacement and may need back surgery. Once cured doctors drop Hep C patients and do not follow up on possible long term side effects.
I have dealt with extrahepatic manifestations of the virus myself. 'Extrahepatic manifestations' refers to the symptoms we have experiences after the virus has been cured.
There is burgeoning research that is investigating these occurences because there are a group of specific manifestations that seem to occur in persons cured of HCV regularily. If anyone would like I can link a few articles and research papers regarding that.
It may even just help to know that some of the symptoms you have had may be explainable!
I know for myself I just thought I had peripheral neuropathy because of my experiences being in recovery from addiction, but no! It is one of the most prominent extrahepatic manifestations.Our livers have so many different functions in our bodies! It absolutely blows my mind! So I think its natural to expect that if we had this very serious virus in our bodies for however many years that there will be lasting effects.
Hi Emma. As you can see from the other posters you are not alone. Have you discussed your symptoms with the doctor who treated your hepatitis C? He or she may have some ideas that could help you. The only caveat I have is not to blame everything on hep C or the treatment. Many of us, myself included, fall into that trap. Sometimes it can be caused by other things. I hope you can get some relief.
I'm starting to see I'm not crazy for thinking even though I've been cured of hep c since 2015 (officially in 2016) that I don't think I ever fully recovered from my severe fatigue. It did get significantly better after getting cured, honestly it was an incredible feeling taking the cure & feeling my energy coming back to life as my viral load got closer & closer to undetected, but I never fully recovered & that has had a very negative impact on my life ever since. I feel like some days I'm just sitting around waiting for that magical moment when my energy returns to what it was before I was infected with hep c even though I've always understood that even though I was cured from the virus, it doesn't cure the damage that was done from the virus. I guess I still always had this high hope that my energy at least would return to what it was but instead sometimes I'm wondering how my future looks when I'm doing everything I can to help my health like going to a doctor for mental health every month & going for physical health whenever I need to, but yet the fatigue cripples me sometimes & I never thought I'd be facing a problem like this at only 27 especially when at 21 I was out & motivated every single day without any issues whatsoever until all a sudden at 22 I was struggling to get outta bed for days & finally got my suspicions confirmed I was in fact infected with hepatitis c.. I fought for a cure & won at 23, was officially marked as cured at 24 (they went off a year of being still undetected before saying I was officially cured & didn't need to do anymore tests unless I requested some).. yet at 27 I'm still struggling & I'm just at a loss on what else I can possibly do about it. I guess I've accepted it but it did help knowing I wasn't the only one who still suffered from fatigue after being cured.
Hi Tash, Faithandkids, Sickofbeingsickgirl, and 3coolcats. Thank you so much for telling us about your post treatment issues. It seems like so many have medical problems after treatment. I know I still live with moderate fatigue and joint pain and I have been cured since 2013. I think how well or sick you still feel is quite individual. I had cirrhosis before I was treated so expected to not feel perfect. The one thing that is good for all of us is that the vast majority of us do not have to worry about progression of the virus. And don't forget your livers have been damaged and just because you are cured your liver takes much longer to get better. There will be an improvement in liver histology for many of us, especially if you were only stage 1 or 2. Stay well and enjoy the rest of the summer. ~ Sue, Community Moderator
