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.

[pjhep80]

you need to be very careful taking alot of tylenol or any acetaminophen ... very very bad for the liver..

[kiowa806]

In my opinion there ought to be some lawsuits filed by all of us that are hurting after the PEG.I feel the drug companies put something out there that is worse than the Hep C.It is all about the DO-RA-ME, and since the nostalgia of who we are for having contracted the disease  the powers that be do not care to get it right.Well i have probably said to much and you are probably tired of listening.Signing off!

[jmjm530]

You're not alone coming out of treatment in bad shape. It's all listed right on the drug info sheets although potential side effects are often skipped over or minimized by many doctors who treat Hep C. My personal philosophy -- and others here differ -- is only to treat with these drugs when you're up against something potentially worse like cirrhosis, which was the case with ne when I was told I was between stage 3 and 4. If I had been told I was stage 2 or even 3, I would not have risked treatment. BTW never heard of any problems taking Tylenlol or Acetaminophen post treatment as long as you clear the dosage with your doctor.

[kickboxingmom]

Hi jmjm530.Nice to meet you.
If I had been told I was stage 2 or even 3, I would not have risked treatment.
If you don't mind me asking, what did it do to you, physically post and /or during treatment ?I was told the earlier you treat the better the odds.Lower damage, better also.Also, if you don't mind.Are you SVR ?

Hurting 1063- I hate to hear you are dealing with such pain.I hope the best for you.
Bless You All,
Tammy

[Trinity4]

I'd risk treatment even at stage 2.  I know I'm at stage 3 right now and I don't have time to wait.  I don't want cirrhosis looming over me.  I have the opportunity to eradicate the disease while my liver is still viable which will most definitely extend my life.  No crystal ball to predict when the liver will take a turn for the worst.  Better to stay ahead of the game is my opinion.  Also, many never experience any long term effects after treatment.  The ones that do are in the minority.  Granted, your life will change to some degree, but at least you know if you reach SVR you've just gave yourself a whole lot more time on this earth.  Isn't that why we treat?
Trin  

[jmjm530]

KBM: I was told the earlier you treat the better the odds
-------------------
Not really, at least according to the study I saw. What it said was that your chances of SVR were identical unless you were stage 4. Then, yes, your chances of SVR were lower.

What did tx do to me? How much time do you have :)]

Briefly, I was pretty much a couch potato for much of the 52 weeks I treated. I had every type of infection known to man and more than half my body was covered with three different types of psoriasis including welts on feet and hands that made it difficult to walk at times. Was nauceous for the first 12 weeks with a bad case of GERD (chronic reflux) which made eating a nightmare. Lost 30 pounds of lean muscle plus my work, closest friend, my girlfriend and strains with my family. I'm skipping a lot cause don't want to sound like I'm complaining :) but you did ask.

Oh, yeah, post treatment I devloped rosacea and couldn't tolerate the sun or heat for a couple of years. That and my metabolic syndrome accelerated which puts me at greater risk for heart disease.

Went into treatment at age 58 feeling and looking like 40 and came out feeling and looking 60. Want to hear more?

But you know something -- I'm one of the lucky ones because I am SVR and my treatment -- and post treatment experience -- is not by any means near the worst here. Many have had it much worse, especially post treatment.

Maybe this gives you an idea why I feel like I do. And its not just from my experience but from what I read here every day about what others experience.

I hope you -- and most others -- do much better!

-- Jim

[kickboxingmom]

I also want to be able to put my toothbrush back in the holder.I just want this gone.I'm falling apart and not treating yet.RA.I just took a test to see if it's caused from hep or if I just developed it.Waiting to hear results.Hands and feet fall asleep.Yesterday had a nerve conduction test.Nerves are good.It's a constant battle once your diagnosed.This really isn't a nice thing to have.You would even have to look and see if you have cuts if you wanted to help someone bleeding.I know I just want it over done with gone.
Thanks Again,
Tammy

[kickboxingmom]

Wow.My heart goes out to you.That's horrible that you had and are going through so much.Yes, I did ask.I wanted to know.I alway's see your post on answering so many people's questions and helping in any way you can.I take it you are a wise man and respect your opinion.I never hear you complain, very rarely, only to pick up bits and pieces peices i b-4 e except after c.hehe.Anyway's thank you and again I am going to do more research.I hope atleast your starting to feel a little better as time goes by.What I really hope for you is that you'll feel 40 again.Do you atleast have a chance that your body will resume back to health ???
God Bless, I mean that,
Tammy

[portann]

"Went into treatment at age 58 feeling and looking like 40 and came out feeling and looking 60. Want to hear more?"

if it's any consolation, i went into treatment 12 weeks ago at age 58, looking like 30. I already look 70 and feel 110, so you're doing okay!!

you wrote so well about your experience and i appreciate it a lot.  We're probably all scared about what the cards hold in terms of post-tx long-term side effects but this forum has prepared us for the possibilities.

[skb28642]

Hi im new to the forum as of august. I finished 52 weeks and was pretty much useless while on the meds, my vl went down but 6wks later was on the rise again. I did feel better after a couple of weeks,  that could  be because my vl was at 200,000,000 when i started therapy. Im back to feeling like it takes all of my energy to walk across the room! My dr, doesnt want to treat me again with peg and ribv. im at stage three. I dont want to take the meds again but i dont want to pick out a plot in the local cemetary. I have had so much pain i could scream for a week. In 1995 i was diagnosed with fibromyalgia about 4 months before i was diagnosed with hep c. A couple of months ago my GP told me i have rheumatoid arthritis. I have NO quality of life. I want something for the pain but the doc says no. I have weighed the pros and cons and came up with this; I would rather live a shorter time with pain meds than live longer with all this pain.

[goosenbee]

In 2006, after several years of medical complains, including debilitating fatigue,  what I feared was early dementia, and joint and muscle aches, I was finally diagnosed with HCV. I wanted TX to make all that "go away," but my hepatologist was straightforward in telling me that there were no guarantees that I would be better and I could in fact be worse afterward. (He required that I have neuropsyc testing before treatment and we discovered I did not have measurable cognitive loss;  I was just having trouble accessing and using the old brain cells. I think that's called brain fog!)

I was in TX most of 2007. I slept most of the time, felt flu-ish for days after each injection, developed  a horrid Ribavirin cough that lasted almost the entire time, mouth sores, diarhea (sp), nausea, weight and hair loss, and severe depression among other things. Had to give up my career as a college professor and go on disability. But I cleared the virus at week 12 and I made it. Felt better almost immediately after stopping meds this January, but then sort of tapered off. Had first post test at 12 weeks, and IT WAS BAAACKKK.

That's been 7 months and I am resigned to spending my life sleeping 10-12 hours a day, plodding through brain fog when I am awake, and being "disabled." I take care of myself and gentle yoga with targeted chiripractic work help with aches and pains (and the mind). I may be slow and sleepy and foggy, but I'm here.

I don't plan on retreatment unless a miracle drug comes about or my liver starts going wonky on me (apparently in pretty darn good shape). I am just now feeling (mentally) like talking about my experience, so excuse the length of this post and thank you all for "listening."

God bless all of you who have been or are embarking on this journey.

Melissa

[proud48]

My heart goes to all that have lasting side effects and congrats to all that don't. I am very thankful for SVR but never dreamed that I would be in the pain that I am in. It is a constant battle with my fatigue,joint pain, severe headaches and ocular and facial Rosacea. My eyes burn all the time. My dermatologist tells me that he has 1 other patient that has the same intense rosacea and she had the Interferon and Ribavirin as well. It would be so helpful if any of the gastro and hepatologist would take this serious and help us research instead of denying the problems that many of us have. I know I have complained a lot on this forum but it is very helpful to me to know I am not alone in this fight. Thanks to all of you. We need to stand together.
proud48    

[Odin999]

Thank you for your contributing to these forums and telling the truth in a way that doctors rarely can, and that no pharmaceutical company is prepared to do.

[goosenbee]

You have my sympathy. I was diagnosed with Rosacea right before the HCV diagnosis.  It didn't really bother me then, but got worse during treatment though never had anything as bad as you describe. It's better now. I also have suffered with my eyes. Diagnosed with severe dry eyes years ago. After HCV diagnosis, Sjogren's Syndrom was suspected, but I tested negative for that. I use two prescription eye drops that help, but it is an on-going problem. [Also tested positive for rheumatoid factor, but tested negative for the disease, thank goodness.]

My general internist (not my hepatologist) is great, but I don't think she took dry eyes, aches, fatigue and cognition problem really seriously until the HCV diagnosis. Now everybody takes it seriously, but unfortunately, they don't have much to offer in terms of help.  

It's sad, but I guess we are in unexplored territory.

[proud48]

Thanks for your sympathy...It just helps to have one person listen and really know how it is..... you have to have HCV and treated or not treated to really know. Since treatment I was postitive for Sjogren's, developed the painful swelling joints, Rosacea started and the glaucoma, and the fatigue never went away. Our families only hear and see what happens but it is us who understand!
Blessings,
proud48

[hippygem]

After treatment, the bodily pains persisted, I think exercise during treatment might reduce this, but I was also diagnosed with fibromyalgia.
The memory loss is still effecting me since treatment 4 years ago, keeping the mind active helps like reading or crossword puzzles, but I still totally forget things and sometimes forget how a word is spelt.....

In saying this, it does get better over time, a long time, I dont know if I will ever be the same mentally or physically.

[orphanedhawk]

Four months after finishing tx, I fell and broke my arm. I've never broken anything in my life! My family doesn't break, including my 90 year old mom whose fallen out of bed.

Two weels ago I was tested by an herbalist/MD and my vitamin D levels are VERY low. My wbc and platelets haven't come up the to where they were pre-tx and its been a year since I stopped. ( I relapsed)

The good news: my memory is improving and my dreams are finally returning.
This is a rough road.
I for one, wish they were looking for something to replace interferon instead of adding another component to the mix.

[DoubleDose]

Jim's comments pretty much sum up my experience with tx, and even though I am happy with the outcome, (I have been SVR for 5 years), my two long, high dose tx'es produced a myriad of long tem syndromes and painful symptoms.  I deal with them but often fear where this is all leading.  Joint problems, neck hip and back pain along with limbs feeling numb or bones feeling deep pain...dry eye and lupus-like syndrome...still very sun sensitive....often fatigued and feeling brain fogged...balance problems frequently...on and on.

You are all correct that the medical community has not really taken a hard, cold, honest look at the fallout from therapy yet.  I think many are in a state of denial.  I am sure that many people have few sx after therapy, BUT I am also very certain that a huge percentage have ongoing, debilitating issues.  I see the stories every year on this forum.  I am not angry about it, nor do I regret doing tx.  I just wish there was a stronger desire to deal with the fallout and after effects of tx by the HCV medical community.  

Best wishes to all of you.

By the way, I do still manage to live a full life, manage a corporate consulting business, have an extended family, travel and do some sports....so I will not let this aftermath stop me from living life!  Its just a bit more painful and difficult than I would prefer!

DoubleDose

[Rockerforlife]

Take some stem ehance and your problems will be solved...I GIVE YOU MY WORD....i know it proberly sounds like sometimes certian things seem too good to be true...BUT I will say  again....this stuff works...i will even send you a free weeks supply

give me you mailing adress

[kickboxingmom]

Thank you All, so much from me for sharing.If that isn't first hand knowledge, nothing is.
jmjm, Yes, I am so interested in ALL the stuff you've had to endure.It's sad you have had such intense pain and struggles,all who have.It's so informative.First hand knowledge.Priceless !
Not tx., yet and a high metabolism is what I had .Some days at 9 am I feel like it's been a full work day.Yes, jmjm, a bunch of people are interested in your health.I ask again.Again thank you so much for helping in ways you don't even know how much.If you were my neighbor I'd bake you a cake.
Thanks,
Tammy

[Marcia2202]

It is really heartbreaking to hear what you have all been through. Wow, I didn't realize it could be that bad. Just wanted to extend my well wishes and love....

Hugs to you all.

Marcia

[nygirl7]

Marcia,

While sides and after effects indeed can be very bad always remember - this is a tricky disease we are fighting and end stage liver disease is MUCH worse than any of the problems that might surface from the SOC.

It's not as if we are taking the meds for a simple pain or cough - this is life and death stuff.  For real.  Truthfully I believe waiting to treat after stage 2 is a huge gamble and one that I was not willing to take.  It's a hop skip and jump to stage 3 and 4 and what if while you are 'watching and waiting' you do miss that stage 3 diagnosis and find out you've already gone to 4, cirrhosis and no way back from that?  Or you develop liver cancer which is generally fatal in the interim?  Who can say if and when that cancer would develop - it doesnt' have to be at stage 4.

So, yes we might be left with some autoimmune problems and pain but when you stop and look at the alternatives............................we did the right thing.  In a perfect world there would be drugs with less chance of sides/problems but when you look at all the people who are CURED of this disease....................well - that is a pretty wonderful thing.

Look for example at someone with HIV - I'm sure they would LOVE to be able to use the word "cured".  We are LUCKY.

[Frank J. Perrotta]

boo hoo, portann already beat me to it!!!

went in as a 42 year old male looking and feeling 25.... 72 weeks cured me and four years later LOOKING & FEELING LIKE A HUNDRED YEAR OLD WOMAN... what a giggle it all is, LOL...

[mikesimon]

I treated within 2 months post transplant. I treated 3 times for a total of 3.5 years.
The first two treatments were for 52 weeks with low doses and weren't successful.
The third was with full doses and extended to 73 weeks and I am SVR. I stopped treatment in June 2004.
Karen and I are still together and have been since shortly before my liver transplant in June 2000. We stayed together through 3.5 years of treatment and my transplant which I can assure you wasn't easy for Karen or me.
I had few. if any, infections while treating and have had one I can recall since treatment.
I had no skin diseases during or after treatment.
I lost weight and some muscle during my treatments but have recovered since then.
I wouldn't argue strenuously that, if you are stage 1 or 2, waiting for Telaprevir is an option. But, I wouldn't argue against treating in those circumstances either.
And there is always the possibility that a physician will err when staging your liver. There are articles which suggest that a significant percentage of biopsies will be read differently by different pathologists - I think the percentage was 24% and the difference is 1 stage and in some cases 2 stages. So when you hear stage 2 can you really be certain that you are not, in fact, a stage 3? And then how fast will you progress?
I was transplanted for hepatitis c and, in the majority of liver transplants in the US, the underlying disease is HCV. So it can be a very serious disease if left untreated.
Jim and I have disagreed on this issue for quite a while now. Maybe it has to do in part with how we came out of treatment health-wise and I think my liver transplant impacts me significantly - I am not at ease with this infection probably in large part because it almost killed me.
There is no disagreement between Jim and me that treatment with interferon and ribavirin is a very rough ordeal. And, it is certainly possible that you could suffer auto immune disorders post treatment. But there are associated diseases with HCV infection and I believe that the longer you are infected the greater is the risk.
I think waiting until you're up against cirrhosis before treating is extremely dangerous advice. If you are really a stage one or two and want to wait I think that is reasonable. But the thing is that even with the PIs it appears as if Peg and Riba might still be in the mix albeit for a shorter time so waiting might not spare you the joy of the Peg/Riba combination.
Mike