3 years SVR, feel worse than ever, 2b was stage1

[aquarius64]

i used to be on this forum quite some time ago, in 2007. i was  2b with Stage 1 Grade 1-2. My gastro said to do tx because i'd probably clear for good.  i did clear by week 4. i never had any side effects from the HCV before tx. if i never would have found outi was HCV positive, i probably would not not have known. life was great. now 3 years post inf with riba, life *****.  by the 3rd month of tx, they reduced my INF to 90 instead of 180 due to extremely low platelets and WBC's. i had to get injections of procrit.  they extended my tx to 1 year due to the INF cutback.  i suffered low HGB in the first 2 weeks of tx and got shots for that.  i had side effects from tx, including my bloodwork being out of whack, fatigue, occasional nausea and became an introvert.  i lost weight (20lbs and i weighted 140 to begin) and hair loss came at the 8th month as well.  then, in the 8th month of tx, i developed pneumonia.  i had been clear since the 4th week mind you, so my gastro decided that i should end tx.  i have  been SVR since and have relapsed on my drinking 2 times.  yes, i was an alcoholic and ex IV junkie many years ago.  even after the alcohol relapse, i was still UND 6 months ago.  i only drank for 3 months.  i will say tho, i have never felt worse in my life. i am 46 and always felt 30. since tx, i feel 60+.  i also recently had a positive ANA test. my joints hurt, the shoulder, the hips, the knees and the back.  i have recurring skin rashes on my thighs and shins and no one can figure out what it is.  i have brain fog and i was always top notch. i have no sex drive and was always active. i know that age plays a part, but this is not how a 46 yr old that ran 5 miles a day (pre tx) should feel.  also, i had an eye exam before tx and it was 20-20.  a year after, my right eye is blurry, left is regular aging issuesand now i have pengueculas (lumps) in my eyes, my hair is like straw, my skin itches constantly, i have super dry mucous membranes and i feel horrible.  has anyone suffered this???  i think i may have fibromyalgia, but my GP says she doesn't think so.  most of my labs are ok, but the positve ANA and high RBC indices and my platelets border on low.  any ideas?  i can't stand living like this. my thyroid is ok, but on the lower side of normal. i have a negative RA.  thanks for any input and i hope all those that are told to tx when they have low VL and minimal liver damage, think twice....

[Trish77]

aquarius, I'm sorry for what you're going through.  You are the exception, rather than the rule.  Calculated risks are taken based on numbers such as low incidences of exceptions and we hope we don't fall into that exception category. If we avoided everything based on exception rather than success, I suppose we'd stop driving cars also.  Again, I'm very sorry for what you are going through.  

I've gone through treatment and the remaining issues I have are manageable permanent thyroid issues and onset of arthritis which is also manageable.  Both are autoimmune issues.  What I know now that I didn't know then is that I could have done a test prior to starting treatment that would have shown I have the thyroid antibody and did prior to treatment - so my risk of developing thyroid issues was present and therefore the risk of developing other autoimmune issues as well - of which RA is one.

I would consider looking at various autoimmune issues, with AIH being one of them although one of the symptoms of that are elevated liver enzymes.  I would also have your testosterone checked as we're learning some of the fellows have that issue after treatment also.    

I hope you get to the bottom of what you're experiencing.

Trish

[R Glass]

I must be experiencing a glitch on my end. There was a reply to Copyman and mj6000 but there was no post by them. They are there now.

[Emily_MHManager]

No.  Some have been reported as abuse, though.

Emily

[R Glass]

Have some posts been removed?

[Emily_MHManager]

Let's stick to the topic.  Aquarius64 was asking about his post-tx symptoms, not whether or not people should go with SOC vs alternatives.

We know that both SOC and alternative treatments can be discussed on this forum, but this is not the thread for it.  

Thanks for understanding.

Emily

[St. George]

I am 12 months post SVR and have very similiar symptoms as you have described.  I don't drink or do drugs and feel worse than ever  a year after treatment.  Don't let people try to convince you that your after treatment symptoms aren't valid just because they did not have the same experience as you.  I am going to see a Heptologist when I get my insurance reinstated and have the guy run every test imaginable to get to the bottom of why I feel so lousy all the time (fatigue,aches,anxiety,insomnia,achey,etc..).  I treated 3 times and each treatment was almost a year and a half in duration, so I know that is a contributing factor of why my recovery is so slow.  Tyr to see a Heptologist and get to the  core of why you are feeling this way.