Long term side effects of treatment anyone interested???

[Grateful29]

It is me Grateful29 back.  Today I see my Hep C Dr. who treated me in 2006 through post time. As you recall my treatment of 48 weeks, geno 1 started in Jan 06 and post  ended  june 07.  Here we are in 09 and I am one of many who is dealing with post treatment side effects which are REAL and I will get back to you all who contributed to forums on this discussion after my doctor visit today.  In no way would I discouragege anyone from treatment to get rid of Hep C... reread what I just wrote in this sentence... I will insist, however, that a lot of people like myself who have been declared "cured" as I was in June of 07 are a bit taken back when they do not feel well after treatment, even worse than before.... That is the TRUTH.  I had to go back on Lexapro, I am very tired and my memory is not good... Point to make:  There is a very strong possibility that while you are elated for being declared cured of the dragon, that the treatment of interferon and Ribaviron can effect the ammune system because of its attack on the ammune system and its battle to fight the Dragon.  We are the experimenters since the treatment is so nesw. 1990's... long term is about a year, 2. 3, 4, 5, etc. continuing after and the problems voiced in this forum need to be addressed... considered... so, therefore anyone with long term side effects... voice yourself and esp. anyone who has had feedback from their Dr. in this regard.  IT IS TRUE THAT THE TREATMENT CAN CAUSE LONG TERM SIDE EFFECTS and doctors and the drug companies need to listen to people like us who are the guinea-pigs IF THEY REALLY CARE ABOUT WARNINGS... I was told I would feel better than ever.  Not so!!!! I feel horrible and worse than before treatment when I had no symptoms.  Keep this forum up front and active to support each other in our struggle to FEEL BETTER.  THANK YOU PATTI

[jmjm530]

At least according to some unofficial polls here, most feel about the same after treatment as before, some feel worse and some feel better. To summarize then, only a minority report feeling better after treatment. I mention this because some state they are treating to feel better and IMO that is not a good reason to treat per what's been reported here. Personally, the only good reason I can see to treat is to halt or reverse liver damage by killing the virus. Anything xtra is a bonus one way or another.

-- Jim

[kittyface]

That's sad to hear that you're still suffering 2 years post tx.  It must feel like a never ending prison sentence because you don't know if you'll feel good again.  

At least your doctor is sympathetic and not dismissive.  I hope the two of you make a diagnosis and devise a solution.

Kindest regards,

Kittyface

[kittyface]

I'm so sorry you didn't clear and had to go through the brutal tx.  My thoughts are with you.

Kindest regards,
Kittyface

[airto]

I didn't clear and now feel like i have aged about 15 years in a one year time span.

Good lord.

j

[Proactive]

Sorry you are having physical issues. I believe there are some who have difficulties as a result of tx, but I also believe tx gets blamed for many issues that are not in fact a result of tx. How is your weight/bmi, do you exercise regularly? Mental heath issues, are you on ad's? You mentioned prisolec, "I have read that others have had very definite problems with indigestion after treatment", actually, I have rarely read reports of post tx indigestion problems. What have your blood tests results been, anything flagged, (inflammation,rf,sugar, etc)..
I think the treatment (I did 72 weeks) takes the wind out of our sails, the momentum out of our lives, and it can be a difficult road back,, at least that is my opinion. And reaching the goal of svr in itself offers interesting problems...one has completed the goal....what next to fill that hole, what do I do now? I mention this because oddly enough I feel much perkier now that unfortunately, I have a new goal, 2 new hips (or hopefully hip resurfacing). So I've been pushing to strengthen my muscles and lose a bit of weight prior to meeting 2 different surgeons next month. And actually have been feeling quite a bit better (I can ride a bike, just need a stonewall to get on and off it! (lol)), both phscially and mentally...anyhow, wish you the best of luck!!!
Pro
PS: I used to be squimish about doing the shots....I watched the hip resurfacing operation on video...I would prefer to due the shot!!! (lol)

[IAmTheWalrus]

I like that (Eureka). Look at it this way: we are educating the doctors on this treatment protocol You would think we could get a discount or something. :-)

I feel MUCH better after TX (6 weeks post) than while I was on it. I still have some definite SX that have not gone away, and I am not sure what exactly "normal" should feel like anymore. But putting the deadly disease behind me is certainly worth the fare so far.

I hope you get it all sorted out and feel better soon!

Brent

[eureka254]

I sincerely hope you resolve your health issues and can get better soon.  I'm pleased to hear that you are cured, but it certainly is not the first time that I've heard that the cure can be worse than the disease.  

People like yourself and those who went before you are trailblazers -- you say guinea pigs, and that is also true -- but what it really underscores is the desperate need for better treatments and effective cures that are benign to the body.  I'm of the mind that the possibility of long-term side effects should be addressed when discussing treatment, but we're all too familiar with the medical community's need for "long term statistics" before agreeing on anything -- and most won't admit to anything not "established in literature" -- and all that is still in the making by patients like yourself who have/are treating.   (Besides, doctors aren't "good" and "smart" unless their patients make them that way :D.)

It's unfortunate that sometimes it seems like we trade one set of problems for another while seeking solutions.  The risk/benefit balance with hcv is a tricky one -- and the treatment still seems like a cr*pshoot -- unfortunately, the possible 'long-term' side effects of treatment is an unclear risk/benefit equation people like my husband have to embrace, because with his history and cirrhosis, he doesn't have any better options -- only worse ones.  I'm glad to hear that you wouldn't discourage others from treating and truly hope you can find the road to feeling better in the very near future.

Best wishes for your improved health,
~eureka

[copyman]

Hey Grateful, I dont remember you so maybe it was before I arrived here. Sorry you are still feeling bad. I agree that these harsh drugs can cause long term side effects and you could feel worse after treatment, but the truth is most people recover after some time and actually feel better then before treatment. What I believe even more is the drugs can bring out any underlying health issues that a person already has. Address each of the issues and hopefully you will feel better soon. One thing is certain, cirrhosis & liver cancer would make you feel much worse. Best wishes.

[Grateful29]

I had my visit with my doctor and I told him how I feel and that I can't help but think that my  treatment is the reason for my continuing side effects.  I appreciated his not treating me like an idiot... He listened and I suggested that he visit the forum to get some insights so keep posting with his interest in mind.  I had lab work done today and by means of deductive reasoning we will work on my health issues and try to find out what is going on.  I simply said that I want to feel better.  He is weaning me off Lexapro to see how I will do as this might be a factor when it comes to my extreme fatique. Thus, I am going to wait for the lab results, work on my diet and go ahead with the scheduled endoscopy and colooscopy... which he was pleased to hear that I was having done.  I have read that others have had very definite problems with indigestion after treatment.  Prilosec is working for me... I told him that my ammune system is obviously shot as it took me FOREVER to get over Bronchitis.  It was a good visit... however, he does not feel that I should have these after treatment problems focusing on the medication as the reason... He still insists that I should feel much better.  We both were being honest.  The support I gain from the forums and others who are going through rough times has made me feel sane and not alone.  My doctor is concerned, but has no answers.  Thus I wait for test results... more later Grateful29

[Kathy73]

Please let us know how the doctor visit goes!

[GSDgirl]

I am very interested in the outcome of your doctor visit!!

Denise

[portann]

This is one of the realities we face, that after undergoing treatment, some of us can actually feel worse than before.

I'm sorry this happened to you. You're far from alone. I don't know if you've seen Jim's new health page about side effects:

http://www.medhelp.org/health_pages/Hepatitis/Members-Comment-on-Side-Effects-of-the-Treatment-Drugs-During--After-Treatment-/show/530?cid=64

My attitude is that any drug can have known or unknown consequences and we need to weigh the benefits against the risks, given the information we have. It's a gamble but many of us have no choice and feel fortunate that at least there's something available, which was not the case a short while ago.

Unfortunately, when treatment is done, our doctor usually gives us a handshake and waves us along our merry way. I hope your appointment today makes a positive difference and that you let us know. It's been almost two years since you finished.