anyone with side effects over a year after treatment with interferon/Ribaviron???

[Grateful29]

Hi I am back as grateful29.  I used to be Lostpass. remember me???? But now I have a minor change in my password, so I had to start all over with a new name.  Well, I completed 48 weeks of treatment with Interferon and Ribaviron and 6 months post at which time in June of 07 I was declared "cured" by my Dr.  Since then I have learned that there is no such thing as cured... non detected is the way to express it because the dragon lurks and this is a time of remission.  My Dr. told me { Geno type 1} that after treatment I would feel terrific.  I was elated to hear the word cured and to know that treatment was over.  { I had all of the side effects... you name it!!!!!  during treatment} Now, here I am Jan 19th 2009, and I am sad to say that awhile ago I had to go back on Lexapro. I am very tired and my brain fog is now called memory loss... "whacko.  I am a non complainer and went through treatment like a trooper with a sense of humor that helped even after crying for "no reason at all" {depression} But in a way I feel worse now because I am SO hungry and have gained 20 pounds,and I suffer with the side effects I have mentioned.  I am now 65 but if you could see me. I look 50 and have a young spirit and smile a lot... but still the truth is, I am older and maybe that makes it harder and me more apt to have side effects????? I don't know.  I do know that support is something we all need.  I am misery and I want company, I guess... just to know  about others who are in the same boat will make me feel better and to be able to share... well, let's face it, who better understands the doctors or patients who have actually dealt with the dragon??? My doctor never had Hep C So, please share with me  the long term side effects of the treatment. Thanks so much.......................Patti

[bajawoman]

Well Girls you hit the paranoia on the head so to speak  I have been around for a while and these posts are exactly why I am afraid to tx  
age 63 this year  My GI tells me the same thing it will make me better
other complications IR RA Overweight suffer from symptoms
make the decision so hard
quality of life  I have some never treated and have nasty symptoms just like you guys on tx
So will tx make me feel better?
Will Tx make me well?
Truthfully it is a flip of a coin for me
Pretty much all of you know my story so sorry to keep repeating
but

Patti I would like your opinion and you too Dee
Do you have any advice for me?

Keep in mind I live alone and run two businesses that without me will fail then doom and gloom no money no insurance
living with all the symptoms of tx
before I knew I thought it was arthritis and fibromyalgia and dealt with it

since being dx all symptoms seem to have gotten worse plus gained 20 lbs with the stress
but now taking that weight off

I am eating better and taking sups and trying to quit smoking and cutting back a bit on my hours as I am not that on top of it for as many hours as before memory problems and cognative issues like forgetting I am cooking something or forgetting I was running a bath

now I am venting  sorry
this is a stressful situation I live with since being dx sometimes I am  sorry I ever knew about Hep C since there really does not seem to be a light at the end of the tunnel for me

Hope is for the young and strong  but I am a warrior an old one
baja

[Dee1956]

I hope it is not too late to add my comments.  I have been off treatment since Thanksgiving 08, I was told I would feel better after about 3 months.  Well, it is over 3 months later, still feel bad, the worst is the fatigue and memory loss or brain fog, there this the pain in my joints which I never had before or during treatment.  Came back positive for Rheumatoid Arthritis.  You are not alone.  I know all these medical doctors say "you should feel better now, everyone else does"  I don't believe it, I believe there are those that do feel better after treatment then there are those of us who feel worse than we felt before starting treatment.  My work is so tired of waiting for me to "get better" even though I relapsed so there is no "getting better" only sick and sicker :). They have given me two options, removing me from my federal job, or I can aply for disability retirement.  I feel bad for all of us who believed that we would be better off after treatment.  Maybe it was to give us hope?  I am trying however I have been sick since Feb 07 and have been told all those months I would feel better and I don't.  Sorry if I am repeating myself, I just blame it on the brain fog and lack of medical support.  One doctor told me it would take longer than 3 months, maybe 6 months, my job is getting tired of waiting.  How do they think I feel? :)
I wish you luck, I have read about people that take longer to bounce back than others.
D

[Frank J. Perrotta]

You are certainly NOT alone.

If you follow Jims link you will find my first post where many told their story: Two years off treatment and still suffering!

We are all working hard to get our Liver Gurus to understand how their treatment may make some very very sick but it is really an uphill battle. I have somewhat given up on my liver Gurus (from the University of Pittsburgh (UPMC) leaders in liver studies). Their staff all recognize that it is treatment that messed me up and are all very very concerned then the Guru passes it off to some other medical issue cause it could NEVER be treatment.

Well, let me stop with the complaining as it mostly doesnt do much to stay positive.

[Grateful29]

You have no idea how much your sharing means to mean.  I feel so alone esp since the doctors think I should feel great..... I had my tyhroid destroyed by radioactive iodine therapy back around the time I had contacted Hep C in 1986 and twenty rears later in Jan  06 I started treatment as an operation stirred the numbers up on the Hep C and then I met with a Dr. who said there was now a cure and I was at risk... so I had the liver Biopsy... with no medication... two needle injections nothing for pain... my God did it hurt!!!!!!!!!!! Showed scarring.  My husband and I made the decision together to go for the treatment with pagasys interferon and Ribavirin.  I was told that I would feel better than ever after.... well... my memory stinks... and one day I lost my memory completely and I came aware of my surroundings in ICU with what they called Transcient Global Amnesia.  I can not recall  to this day what took place.  They thought I had had a stroke. I didn't. I then became cery anxious and afraid to go out.  The anxisty kicked in followed by depression and my blood pressure went up.... so I went back on Lexapro a\fter waking up in the middle of the night with a full blown panic attack.  I had panic attacks and anxietyy on treatment.... I did suffer occasionally with them prior to treatment but I never had to go on an anti depressant until the 3rd month into treatment when I started crying for no reason at all.  I suffered all of the side effects throughtout treatment, but God love my husband, He was alwasys by my side and my main support.  My family did not understand wht I went through treatment and they were not that supportive... my Mother got involved and went to see my dr. ready to punch him out LOL mined you she is now 87 will be 88 in March.anyway I am still her baby 65 now.. I am repeating myself sorry... but after talking with him, she changed her tuned and was very sympathetic.  I called her one morning because my lips were huge and I had the hives, big welts all over.  She came to take me to the hospital and could not believe her eyes.  Another time she came to take me to the eye Dr, as my vision was blurry.  Anyway, without my husband's support I would never have made it through.  Now my ammune system is shot. I have Bronchitis, had it since before Xmas and the ciough is unbelievable.... got to scoot write back thanks.... Patti

[hippygem]

Hi, sorry to hear you are still suffering.  I completed tx in 2004, relapsed, geno 3.
I also suffered bad side effects from treatment, it took me 4 years to get back into some sort of 'thinking' order.  Memory loss is a huge issue.
All I can say is give it time, it may take longer than you think or what you have been told, we all recover in different time frames.
Sheesh, I have only just got over the last treatment and Im going for it again in April, and I am not looking forward to the recovery process after it.  Hopefully it wont take as long.

Good luck, enjoy your life as best you can, and you arent alone out there.

[Kristina538]

Has your thyroid been checked since tx?  Sorry to hear you're having a rough time.

[jmjm530]

You can be cured of hepatitis C but still have side effects from the treatment drugs. Often the treatment is more than worth it, but sometimes the treatment appears to be worse than the cure. For anecdotal accounts of post treatment symptoms you can check out this Health Page:

http://www.medhelp.org/health_pages/Hepatitis/Members-Comment-on-Side-Effects-of-the-Treatment-Drugs-During--After-Treatment-/show/530?cid=65