Long term side effects of treatment

[gabby664]

I'd like to know if anyone else out there is post treatment for over 7 years and if you have near-debilitating side effects of pain in joints and muscles, fatigue, feeling that the "old you" has vanished and a new one took her place?  Did you develop any behaviors that were foreign to you previous to treatment.  I contracted Hep C from transfusions in 1990. Things have gone downhill since then

[cheflady]

Thank-you we will hubby as to see hep doc in October so we will want and ask serious questions, at the time we took a dictaphone to make sure we hadnt missed anything what he said, the only thing he was bothered about was when hubby wanted to start tx  hubby was only patient 10. It was only through he good people on this site that we found out that peggy was a form of chemo and we had no such luxury of a black box warning thanx again

[gabby664]

Wow! There was nothing like that given to me or said to me. I was given the scripts and that was it. But I liked my doc and given the choices again, and given the long term risks, I still would have chosen treatment. After all, it worked.  Thanks for info. I'm looking into pain management as per F. perrotta.

[quayle]

I live in Australia and were all give the possible long term side effects told and
onpaper,so your treatment team were very negligent and you should sue them
as the facts are there in black and white and you should confront your treatment team as to why they did not tell you,possible lymphomas were also on my for before starting,but explained as extreme but none the less I was told and I would have words and get a legal opinion for litigation as that is gross negligents hope that helps.

[quayle]

Well thank your Doctor was negligent as this has been known for years my clinic team told me all this before going on treatment and also gave me paraphnalia on it ,example continuing Thyroid problems have been known for years,not alot get i,I had to sign acknowledging I new the risk.You must have had a very inexperienced Dr,and I would suggest you get a lawyer and sue if you can prove he did not tell you these facts,in the litrature it also states long term effects of some auto immune diseases.so difinitly confront him or her.

[cheflady]

hi my hubby only finished tx end of April but his hep doc never once told him how toxic these drugs were it was only through this site that we found out that interferon was a kind of chemo drug and over here in England there is no such thing as a black box warning. My hubby experiencing bone and muscle pain which keeps waking him up 2/3 times every night. We just hoping after the 6mth have past and drugs are out of his system that things will start to improve!

[gabby664]

I was never told there could be long term issues. I was treated several years ago and the "gamble" was whether or not it would clear the virus. My complaint is that the pain is debilitating and I'd like to know if there is a good solution for this. I am grateful that the treatment worked for me. Wishing you luck with your situation.

[quayle]

I am on triple at the moment.So I know if you research the Drugs you are taking,you will see that they are toxic and can be life threatening,and fatal,
but everyone is told this before treatment so I think people don't think about anything but getting rid of hepatitis C.I believe you cannot assault your body
with three Highly toxic drugs for a prolonged period and everyone will come good eventually,some  yes and some will be unlucky and have life long side effects that's the gamble,you must have signed the form indemnifying them of any responsability  of these effects so Having gone into this with your eye's
open I don't understand your complaint,maybe it was just a thing of, It won't happen to me. good luck

[belle19]

i am 63 years old and had hcv for 37 years.  i went thru tx and reached svr last november 2012.  i am better than ever.  starting surfing again, got rid of my lone time depression, and i'm better than ever.  i guess i should feel fortunate.  life is great for me.  good luck to you.  belle

[gabby664]

Thanks for your post. I will check out both PIS and LDN. Hope you are feeling better.

[Frank J. Perrotta]

There are many of us long timers!

PIS (Post Interferon Syndrome) is the latest catch all and has some of the younger docs well informed.

It comes from the Mayo Clinic. From what I hear they are also using LDN to help treat PIS but there is no info if it is successful or now.

I hope to start LDN on my own with my GP pretty soon once my GP gets the program started.

Hoping you have a good doc who believed you and what you are going thru...

best of luck in this crazy mess of a world,
frank

[uriah1]

Hi Gabby....I am 16 months post tx and am still having some issues...fibro, bone and muscle pain, massive fatigue, some depression, all things I never had before.  I HAVE experienced some cool healing though...my bladder isn't overractive like it was pre tx and my back pain is a lot better too.  HCV really has widespread effects...
It's hard after treatment when we expect to get our lives back together.  Please keep us posted on what you find out...
Jeannine

[Dee1956]

Hello, there are other people on here who may stop in who are having long term side effects of tx.  I hope they will see your question.
I am having some tendon problems, I am 18 months post tx.  It could be age, damage from the HCV, damage from the tx.  It is hard to say.  I am trying to give myself two years to recover.  I hope you can find some help on here.
Did you tx? Did you clear it?  I am only asking because I relapsed the first time I treated and was pretty miserable for almost two years after tx.
Take care
D

[his3707]

Im not 7 years but I am post treatment 18 months and am having increasing joint pain.  I had joint pain on treatment that I had not experienced before.  Hips, knees, ankles, back ,wrists, neck, everywhere.