Therapy VS. Quality of life?

I suppose this is for all the non-responders/relapsers. After 2 treatments consisting of 101 wks. and maintainence of 24 wks., I have been off of therapy since June. I have been left with a laundry list of side effects/ health problems. My quality of life has been taken from me for 3 yrs., going into the 4th. Is the therapy worth it? I just returned from Shands Hospital in Gainesville, Fl., and at least was given definite answers to some of the health problems & most lead back to the Interferons. Is anyone else experiencing long term issues? I am a 1B, stage 3, grade 4, age 62. At this point in life, I am not ready to give up my quality of life to support another round of treatment. What do you all think?
Sandy

[wndycity]

I am a non responder, age 54, male, was not successful after 16 weeks of Interferon treatment as of June06. I have the same question about the side affects of treatment with Interferon. My virus is actually worse and my ALT has actually doubled after treatment. I did have many side affects but they are now gone, but I only treated for 16 weeks. I

[Imagine]

Thoughts? My first thought is that I feel for you. It

[friole]

Sandy, quality of life comes into consideration with both the side effects of hepatitis C and Cirrhosis and the side effects of the treatment for same.  The side effects of tx may be minor if you compare them to a liver transplant. Has transplantation ever been a topic of discussion with your hepatologist?

I believe that the long-lasting side effect of tx that some of us have are to be taken seriously IF transplantation is NOT the issue.  There is certainly good reason not to continue treatment if the sc of the disease are not severe and the sx of the tx are.  

Age is also a prime factor.  I know I think about that a lot too - being 59 with one relapse under my belt now.  If I were in your shoes with 2 relapses I would think the current drugs are not adequate for my strain and would wait (depending on the liver condition) for better drugs.  However, I would not give up.
frijole

[bobbyullc]

i just got my 6 mo pcr and i am svr.
i do have long term sides. memory loss, skin problems, fatigue and low level depression and lack of initiative. never felt this way before. besides loosing one year of my life i am left with these sides. i was determined never to tx again with present peg if i did not clear and could wait for new drugs.
there is a time to say, wait, this is not the way yet.
good luck,
bobby

[DoubleDose]

Please describe some of your post-tx side effects.  I am sure you have read my posts about my own post-tx sx, and that I am three years SVR but continue to be plagued by interferon induced problems.  What have your doctors said about the interferon as a major cause of your problems?  Are they aware of other similar problems in their patient population stemming from the interferon?  I keep hoping the issues will fade away, but they seem to come back in full force, and new issues crop up as well.
You would have thought that for those of us who become SVR that we might feel a good bit better, rather than feeling like death warmed over.  I am plagued with low energy, brain fog, bone and joint aches, autoimmune skin reactions, balance and CNS issues, numbness, gland and eye problems, and on and on.

I am curious as to your specifics, and the consensus of your doctors regarding how interferon causes these problems.

DoubleDose

[marchingon]

I learned yesterday that I had relapsed for the 2nd time. I am a female 2b age 53. I am healthy and very active and fit (when not treating!) I treated for 6 months 1st time and remained non-detectable until 6 month PCR. 2nd round began 1/2 year later and lasted 12 months. I was non-dectable throughout treatment until the 3 month PCR which came back yesterday. I am also trying to figure out what to do now. I have started a pro and con list on a piece of paper and will take it with me when I visit Dr Cecil on Jan 10th. Perhaps if you write down on paper what you know and learn from others it may help you. May the words "undetectable" ring in our ears and in everyone else's on the forum in the coming New Year!

[scubadiver30]

Hello Marchin
I'm a fellow 2b currently on 1st TX (6 shot today)
I was wondering what was your VL at the beginning? Your ALT'sAST's? Did u have blood suger issues?
Where you UND at the 4th week? and your baseline weight?
You did 72 weeks and relapsed with a higher VL and Enzimes?
Did u do extrme exercise in between TX?

Sorry to be so inquisitive but it looks you're healthy above average so it must be pretty frustrating to relapse when you had a lot of things going for u. If it was like this for u it looks pretty darn obscure for me too...  :-(

saludos y gracias
scuba

[susan400]

Dear Sandy,

I know what you mean.  After treating all the times that I have and having never responded, I'm really not liking the me that I am now.  I vaguely remember some semblance of the person I used to be 10 years ago, before I started any of these treatments.  I was taken off my last treatment back in June '06 as well.  As in my post above, I just came from the doctor today, with yet another added diagnosis to the list of things, which I believe have been caused by the inferferon, or the Ribavirin.  Since, June, when the last treatment ended, I've been bothered with still: chronic insomnia, depression, skin itch(now the above diag.), heat problems, shortness of breath at times and sinus problems, lack of motivation, muscle aches, tiredness, and on and on and on.  Oh yea, and my thyroid has now been decided is on the low side, so Synthroid (low dosage), as been added into the mix.  None of these things were as wrong with me several years back.  My first 1 or 2 treatments, I bounced back from fairly well, even though I was a non-responder.  After that, the next several times, I've not done all that well.  I actually feel like when I was on treatment, I was trying to do something about the disease, or so I thought at the time.  Now, I don't know what to do, or what not to do.  It's like you're in a state of flux.  I have a stage 3 or greater, no reversal on biopsies.  I'm a grade 1A/1B.  I don't really feel like doing anything of significance most of the time, but I don't really feel like sitting around doing nothing either.  Anyway, I do have my faith and that's the only thing that's kept me going thus far.  Hey, who knows, maybe some day, we'll run into each other over at the Lakeland doctor's office. Do you still go to him?  Or did you stop going there once you started going up to Shands?  I wish I could offer some great and wonderful advice.  I can offer you my empathy and a caring ear(board postings in other words).  Susan

[Imagine]

I just want to say I am sorry you had another big disappointment MarchingON. I guess your tag says it all.

[SJL]

I was a very healthy, ambitious Donor Development Officer at Arnold Palmer Hospital in Orlando, until I started treatment. The only way I found out that I had Hep C, was that I continued to be fatigued and perspiration rolled off of me. Still does? I went in for a complete physical & they ran all tests, with Hep C popping up. I supposedly found the top Gastro in Orlando, had a biopsy, and was placed on a waiting list for Peg-Intron. The biopsy showed that I had carried the disease for around 30 plus yrs., so their was significant disease. The Gastro was the pits & really knew nothing about Hep C. So, that was my second mistake. My first was not researching, finding out everything I could about the disease, instead I panicked and suffered terribly during the first treatment with no aids to help. I did show undetectable several times, but then was declared a non-responder & ultimately a relapser. I then took a break, researched and even had the hospital library research and I found Dr. J. in Lakeland. We decided to try 52 weeks of daily infergen injections, plus riba. This time Dr. J. and his incredible office staff were with me every step of the way. I have incredible admiration for him. I had 6 continuous undetectables and was feeling very good about this, but still had horrible sides, but I had the help of meds to fight them. I celebrated with a trip to Aspen and before I got home, I knew the virus was still their. We did a 6 wk. VL, and sure enough it was higher than ever. We then decided to go on Pegasys maintainence in an attempt to at least control what virus their was there. I did 12 wks., never feeling any better and decided to give it up because of the sides. I actually saw 2 Neuros,(paresthesia, infergen induced numbness, and carpal tunnel) a physchiatrist,( drugs, drugs, drugs) an Orthopedic Surgeon,( Spondeolthesis 4 & 5 discs, bone spurs/cord, bilateral leg system), who sent me to a Neuro   Surgeon,( Stenosis, Neuropathy and said my brain was not responding to relaxed state, resulting in nerve damage), a Cardiologist,(fine) my Primary and I had Kinesiology Craniosacral Therapy (lasers).I was offered steroid injections for the numbness in my feet and legs, by the Neuro surgeon-who also said it probably wouldn't help. So, I did not take them. My side effects at this time are Neuropathy of both feet and lower legs. They actually go numb on me with no indication, resulting in 14 falls, which I think have caused the 4 & 5 disc problems, and maybe even more. Extreme fatigue, aching in joints, dizziness,stability, shortness of breath, lack of concentration, depression, itching, insomnia, dry mouth & nose, extreme perspiration,short term memory loss and overall mad and ready to confront and take on anyone about anything.

At Shands, I was told that I had a triad(which consisted of lack of sleep, pain & depression.) My meds are being changed ADs.,( Lyrica & simbalta?)I am having a MRI of the left knee, Neuropathy could reverse itself, fibromalgia, osteopenia, and peripheral nerve damage to the left knee was diagnosed. I also have Cryoglobulin, and the Doctor told me to never get cold because of the cryo. It will induce the white blood cells to stick together more than ever. I was given 2 steroid injections in both legs. Dr. Kosboth numbed the legs first and then went into the bones with the injections. What a difference this has made! I can actually walk better & straighter. She said they should last 3-6 mths. Dr. Kosboth also consulted with another Doctor who also examined me. They actually examined my knees and watched me walk, this actually put the icing on the cake, as none of the other Doctors listed above even looked at my legs, only ordered X-Rays & MRI's. They are running several different blood tests, which I have never had run and after they receive these and the report of the MRI, they will see me again. The difference of a University Hospital is that they have the research, the Doctors, and the time and will work together as a team on your case. I was truly impressed, but Susan, I wll continue to see Dr. Johnson. I hope I have answered all questions, and sadly I had none of these problems prior to traetment.
Sandy

[susan400]

Hey there.  My next appt. with Dr. J is on Jan. 24th at 12:30.  When are you supposed to go?  

Susan

[wyntre9]

your story is both terrifying and tragic.  i'm so sorry to hear about the years of side effects and hope that undergoing treatment will ultimately prove to have been more beneficial than debilitating.  i guess there's no way to tell beforehand especially if, as in my more more deranged moments i sometimes suspect, we're all just lab rats for the pharmaceutical big business express.

but if that's true, there's no hope for any of us.  i suppose i refuse to believe that yet, although reading your post and the many equally horrifying responses has been sobering.

anyway, hang in there and best of health and luck in '07.
wyntre

[marchingon]

First of all, Happy New Year to us all! May our health improve this year!
Scuba, this New Year holiday has ironic meaning to me. I received my Hep C diagnosis on Dec 31st 2003. It was a long weekend of panic for me. I found this board that weekend and have been reading but not writing ever since. It is a scary diagnosis for everyone, but for me, it is significant because my brother died from the effects of Hep C just 5 yrs ago. His liver was cirrotic when he was diagnosed so he was already in big trouble. Anyway, my viral load in 2003 was >700x10 3IU/ml or 1,890x10 3 coies/ml. My biopsy said mildly active without fibrosis. Mt Grade was listed at 5 of 18 and my Stage as 0 of 6. Pretty good results as far as my diagnosis is concerned. So, I did a lot of reading and studying and decided I wanted to treat right away as my odds of kicking the disease seemed pretty good. (age, gender, genotype, general health etc). My AST was 58 and my ALT awas 93. After all the tests and biopsy and all that stuff, I started my 6 month treatment in March 04. My first PCR was in June and I was negative. I remained negative throughout treatment and the 3 month post treatment PCR. It was the 6 month PCR showed 517,000 of the little buggers.
I was devasated and asked my local GI when I could retreat. He said he would not retreat. So, I went to another local GI and he said he would not retreat if he were me. I kept reading posts on this site and learned about Dr. Cecil. He was within a reasonable driving range for me and I went to see him in 2005. He believed that I had a great chance of responding to treatment by lengthening my treatment period to 12 months and felt that I could reduce my ribavrin by one pill. I embarked on this journey on Labor Day 2005. I was undetectable throughout treatment until my 3 month post-treatment PCR on Dec 8th of 2006 when I was back  up to 593,000. As I mentioned, I will talk with Dr Cecil in 9 more days and will listen to what he has to say. I am reading with interest the posts from all the other relapsers. I gain valuable information here that helps me handle my diagnosis.

[ladybug52]

Sandy: Go for quality of life is my humble opinion. You've been thru enough. I have friends in another state who were not able to tx, or didn't respond and one of them tried to talk me out of tx because of the sides. He kept saying he will probably die of something not hep c related so he was going to take his chances. This will be my one shot and if I don't clear I wiil just try to live healthy, eat right, avoid alcohol and appreciate quality time with my loved ones.
Bug