Bone Damage with Interferon and memory loss

[Hurting1063]

I was reading and noticed a question that a Marsha had regarding bone damage... I finished  my treatment 5 months ago and found that I have a hard time remembering things, my bones also  hurt, I have a hard time sleeping I'm in so much pain, I 'm up to 4 tylenoel a night  and some times that doesn't even help. Iwas recently diagnosed with pantar facitisis (sp?) and have a hard time walking. Is all of this damage to my bones and body coming from long term use of Interferon and rabavin (sp?) If  people are starting to complain about their bones and bodies hurting, don't you think there should be some kind of study going on somewhere.

[2doggiemom]

I wish I would've found this forum 3 years ago when I started treatment. I just found it looking for a connection to vertigo.  I'm having queasiness and headaches and was wondering if that is another side effect. I cleared the virus (my treatment went from April 2008-2009).  I didn't know that the side effects would last so long.  I'm a teacher and went back to work in Sept. 2009 and have been struggling. I'm going to try to go on disability cause I feel really anxious from all the work, I've been diagnosed with 5 herniated discs, 2 rotated discs in my neck to add to the mental fog, low level depression, the feeling of not having any motivation or desire to do the fun things I used to enjoy, low energy.  I went in being 54 feeling 40.  Now I look 54 but I feel 70 sometimes. On top of all that, I've been HIV+ since 1989, assymptomatic, and continue to be that way. I pray to GOD that it stays that way. My husband, on the other hand, is on meds for the HIV, but never developed Hep C. I thought the HIV was what I had to worry about, and maybe I will have to in the future, but for now, I'm glad to deal with all these side effects and not with AIDS.
God bless all of you,
I

[RobertBeWell]

From my reading, it seems that a non-IFN regimen is ten years out, at least, if everything goes perfectly. So, IFN is going to be a component of the SoC for the foreseeable future, although likely for shorter treatment durations.

Since we can't escape it for now, is it wise to wait through 10+ years of aging and liver damage?

Tough question. I'm struggling with the tx decision even as I type. Thanks everyone for the valuable advice herein, and my best to all of those experiencing after effects from this treatment.

[no_c_em]

Its 2010 now and this thread is several years old BUT, for anyone 'new' who maybe reading here - I was diagnosed this past February ('10) and have yet to even have a biopsy let alone start Interferon/Ribb and I can tell you I suffer from everyone of the things called 'side effects' here post treatment ! I loose my balance and top to the side when walking. I can no longer spell and it takes me forever to compose a simple e-mail/post because my brain is so 'fogged'. I have a strange rash like issue on both my calfs running down to my toes - my PCP has no idea what it is nor does my GI doc. I get leg cramps all the time - while driving and in the middle of the night. I can't reach around to itch my back because my joints no longer have that kind of flexibility. In fact, getting up from a kneeling position requires me to grab the couch/chair etc and pull myself up. Its very easy to conclude that what you ate, had taken med wise etc., that it is this that made you sick. Many who get a stomach virus have a hard time even looking at the food they ate last prior to getting nauseous (for example). Its the brain making the association - probably a built in protection of some sort common to humans. Hey, a burn hurts - you know not to pick up something hot again. Hope I'm making sense here - its 3am and I really should be in bed LOL !! Anyway, keep this in mind please. Honestly ? I almost shut down the page and decided 'no way am I starting Tx yet' after reading half the page or so. Thankfully I decided to continue though and found that some of the posters had been taking much higher levels than the doc might prescribe - that puts a whole knew spin on this thread !! I'm not trying to be nasty here - as I said, I need to get to bed but I felt it was important to say this before heading off - more direct then I would normally write and defiantly more sloppy !
Hope this helps someone....

[goosenbee]

Your story about losing family and friends is very sad. Of course, if they ditched you because you have a disease, you're probably better off without them. But I know that doesn't really ease the pain.

Congratulations on SVR. Hang tough.

Melissa

PS -- just to underscore the points about everyone being different -- I, too drank about 100 ounces of water every day during treatment and my side effects were horrible. (I also made an incredible number of trips to the john every day -- and night!) I know it is helpful, but it's not a magic bullet for everyone.

[Hurting1063]

I just wanted to thank everyone who gave me more insight on the lasting effects.  I am a SVR so far, I have type 1 Hep C and the reason I did treatment was for my children. I was told that I didn't need treatment because I had no liver damage yet.
But I did it because I didnt want to wait until I got to stage 2,3 or 4 , I wanted to be there for my children, I wanted to see them grow up, go to college, get married.  When I found out I had Hep C I was very angry,  I don't have any tattoo's, I don't drink I have had the same partner for 26 years, I have no percings, I don't do drugs , no blood transfusions, nothing.  I was the only person who had it in  my family, the only thing that we could figure out is that I went to Mexico. Like a lot of people do and had dental work done.  I'm not saying don't go to Mexico, but everyone should check out the office you are going to .  
Anyways when I found out I was upset, I wanted to go out and drink, do drugs and sleep with everyone I saw, have a few tattoo's and at least have one blood tranfusion in my life...... I thought if I was going to blamed for having this sickness then I might as well enjoy it. I finally had my children telling people I had cancer, because that is more acceptable then telling people you have Hep C. I lost friends, family and few rumors about  my life that I didn't even know happend in my life .............

But after all is said and done, I might hurt after the day is done and I might not remember your name, and I might have to take a nap once in while still,  But I'm alive and I think this sickness made me stronger.  I get to watch my children grow up and maybe I will be here when they go to college and get married.  
But after all is said and done, I 'm glad I'm still here  and if I have to I will do treatment again, because a few hurting bones and some memory loss might suck, but being six foot under would really suck.......

Here is a closing tip for everyone I had no side effects during treatment, I think it was because I drank 12 - 8oz glasses of water brfore 12 noon ever day and on injection days I would drink 3 more glasses of water before I took my shot.... I think the intake of water, just made the medication go through my body a lot faster and I think It helped my kidneys probably clean out a lot of toxins in my body at the time.

Again thank you for your info and help, reading your messages makes me feel better, I should of been writing you guys when I was going through treatment. Hopefully I won't ever have to go through treatment again.

Bless you all and I wish you all the luck in what ever stage you are right now.

Claudine

[alagirl]

the effects of treatment are no joke.  I'm just starting to get my life back again and I know that forever I'll at least have ra, and I suspect I've got some other issues, including some cognitive difficulties, but I'm not looking too hard at that right now - just hoping they'll continue to get better as time passes.

Forget for a moment that I was an acute patient - I think that with my genotype I would have been nuts not to take advantage of the natural statistal boost it gave me to treat right away.  But if I had been a chronic patient with low liver damage when I discovered I had hep c, how would I have known that I wasn't risking long term damage to my kidneys by delaying treatment?  And wouldn't I be concerned about living the rest of my life with a damaged liver if I waited until I was at a 3 or a 4 before I treated? How did you reconcile those questions?  I'm just kind of wondering, because those are my main concerns with that issue.  I certainly, especially after treating, am not knocking the dangers of interferon.  I see them and I know them personally.  

Prior to treatment I didn't appreciate its toxicity.  Its not a nice drug and I don't think it just damages the minority, or a small number of patients.  We know by study that 25% of everyone treated with interferon comes out of treatment with an autoimmune disorder.  And if that's true, you can imagine that interferon is causing other damage as well, that just hasn't been measured by study.  The anecdotal amount of thyroid damage seems rather high, and it was the first thing my doctors tested me for so it made me think they've seen it a good bit as well.

But how do you, or did you, weigh that against the fear that a compromised liver, or compromised kidneys could shorten your life span?  I'm just interested in your thinking on that, because that's what I couldn't get past when I pondered the "to treat or not to treat" question (again, kind of moot for me as an acute, but still, I frequently thought about the "what if" of that question and still do, in fact).  In my family, people live up into their nineties.  I would have worried a lot about the ability of organs that had been weakened by hepatitis c getting me that far.  

I think these discussions are valuable, and these forums are for everyone, pre-treatment, during treatment, and post treatment.  For anyone to base their treatment on someone else's experience would be careless, stupid, and rather... sheeplike.  I don't think we should censor ourselves though, out of fear of affecting newer posters.  When I was new, I found this site to be the most valuable and the place I stayed BECAUSE of the different opinions and the unvarnished truth from everyone.  In fact, I think my first week here there was a huge fight going on about something or other that was hugely long - we haven't had one of those in while (not suggesting we do, just sayin').  But I knew nobody was sugarcoating anything and people were being honest about their perception of their experience.  Therefore, I could ask questions and trust that what I was getting from people was the truth, as they saw it, even if they didn't agree with each other.  And that was much more valuable to me than people trying to soften things for my benefit, or trying not to worry me.  If I didn't want the truth, I wouldn't have been online looking for it in the first place.