post 48 weeks Interferon-Ribavirin

[proud48]

I completed the 48 weeksof Peg Interferon and Ribavirin Feb 2006 and have never been the same. I cleared the virus so far and feel very positive about this. I have never felt this sick and weak before the treatment. I have memory problems,weakness-fatigue, muscle and joint pain, headaches, severe facial and ocular Rosacea, depression panic attacks. I was very active before treatment going to yoga and work. I was so weak after treatment that I tore both my shoulders and just had the right one repaired. I feel like I am a train wreck and just can not find information to explain why this is happening....My doctor tells me everyone gets back to normal about 6 months post treament. This is not the case for me. Please let me know if you have the same problems. I have not been able to work for the last year due to these problems and it makes me feel so depressed.    

[jmjm530]

Sorry to hear you're having problems, many of which appear all to common post treatment, and are often downplayed by the doctors both before treatment and after treatment. Wish I could agree with your doc that "everyone gets back to normal about 6 months post treatment" but it always doesn't work that way. It took me close to two years post treatment to get back to normal, or sort of normal, as some rosacea and an increased metabolic syndrome still linger.

For those relatively new here, the following is a compliation of threads pertaining mostly to post treatment side effects. They are not "cherry picked" as some posters in the past have suggested when I previously posted the list. They represent the viewpoints of whoever was posting at that particular time, both the good, the bad, and the ugly. Often the argument is made that those that post here tend to have more side effects than the general treatment public or else they'd be out playing golf or something instead of "whining" :)

Well, that's one argument, but another is that many here have admitted they tend not to complain too much about their side effects -- especially post treatment -- because it may discourage others from treating. So perhaps it's a wash with these two groups, really don't know, except an online survey someone posted a few months ago also suggests that most do not feel better after treatment, quite the contrary.

Of course, this doesn't mean not to treat, just that one should weigh the potential risks versus rewards.

http://www.medhelp.org/posts/show/286686
http://www.medhelp.org/posts/show/286686
http://www.medhelp.org/forums/Hepatitis-Community/messages/965.html
http://www.medhelp.org/forums/Hepatitis/messages/41434.html
http://www.medhelp.org/forums/Hepatitis/messages/41439.html
http://www.medhelp.org/forums/Hepatitis/messages/41446.html
http://www.medhelp.org/forums/Hepatitis/messages/41492.html
http://www.medhelp.org/forums/Hepatitis/messages/41498.html
http://www.medhelp.org/forums/Hepatitis/messages/41506.html
http://www.medhelp.org/forums/Hepatitis/messages/41513.html
http://www.medhelp.org/forums/Hepatitis/messages/41515.html
http://www.medhelp.org/forums/Hepatitis/messages/45385.html
http://www.medhelp.org/forums/Hepatitis/messages/45437.html
http://www.medhelp.org/forums/Hepatitis/messages/45337.html
http://www.medhelp.org/forums/Hepatitis/messages/46376.html http://www.medhelp.org/forums/Hepatitis/messages/46380.html
http://www.medhelp.org/posts/show/303629

[nygirl7]

I treated for 72 week and it's taken me about 16 months to start to 'feel' normal. Still I have the horrible skin rash that flares up on my face and hands and my thyroid is shot and will never return.

Are you undetectible still?  I try to hold onto that since it was the reason for the whole thing.

Some of us might just not end up as lucky as others.........although it stinks if we have SVR to hold onto at least maybe that can make us smile. :)

My thoughts are with you, I'm sorry you are feeling so poorly.

[Bigfloyd]

I read some of the posts you have provided I didn't really see any examples of happy outcomes. I'm sure there must be some there, but I just don't have inclination to wade through it all. I do have to assume that the medical community is not engaged in some kind of conspiracy and that the vast majority will become symptom free post treatment.

I am sorry that has not been the case for you a many others.

[mar148]

Well I am about 6 weeks off treatment and feel better than I did before treatment, go figure.  I guess everyone is different.

[triggertime]

HepCrud with out a doubt is a bum wrap. I WAS infected for over 30 years (assumed). I was scared to death when dx'd. I was scared of treatment. A shot a week. I hate needles. So what! I did the 48 wks peginton/ribavarin, and all the ADs and other drugs as needed. It sucked a big one. Tx made me pretty sick. I hated it. At the end of tx I felt like I had won. Im no quitter. I beat it. Top of the world for me.
Then relapse. What the hay. I decided to tx daily shot of infergen. God, I hate needles. Weekly blood tests. Procrit shots 2x a week I was a veritable pin cushion..
QOL was non-existant. Last shot was 09aug07. 90 day post TX I was UND. 6months post TX SVR. Now 8 months post TX I have more energy than I can remember having. At 58 I feel 39 again. Chasin' my wife all the time. Fallin in love all over again. Life is grand.

To cap it all, HepCrud slowly over many years drained me of life. All the while I thought I was just gettin old and I just had to deal with it.
Im glad I treated and would do it again if I had to.

HepCrud tested my metal and I became stronger for it. I will never give in. I WIN


I may not be any good but Im slow.
Triggertime

[sldb]

I guess iam one of the lucky ones, geno 1a txd 96 wks, svr now 20 mths. Feel better than i have in years.  I still have some sides left over;  tinnuitis. visual dist.,but all joint pain gone.

[stubby226]

I just completed reading the forums as the result of possible input about post treatment sx.  When I 1st read Proud 48 and NYgirl I thought I was reading my own story.  I found it interesting out there that if there really wasn't side affects going on after treatment that my doctor would tell me that was what I was having. She also said each person was different and that people cleared after 2-6 weeks, 6 months, sometimes a year and some never clear.  I also found it interesting that another doctor I was seeing said the tx I was on was worse then any other med on market. Was on interferon/ribrovrin x 46 weeks, had 2 blood transfusions, had antideprresant increased.  I am a very lucky person as I had a super team of doctors, excellent family and church support, and some support from work. Sad to day I did not stay HCV negative.  I also have managed since off tx to have 2 bouts of Pancreatitis.  Would I do it again.  Yes.  Not knowing I would turn positive.  I would tell anyone if they have the option, the require it, have in place excellent doctor and support systems to go for it.  Gotta go.

[Catll]

...Most of the horrible sides are gone! I feel better than ever...

The most significant side effect I am fighting with:
I got Rosacea on my face...I call it dermodex based on the symptoms.

[brazeagle]

I am about to start tx in a couple of months.
I am 1A-B for the past 15 years and require a 48wks of pegy-nterferon/ribrovrin, I hear that most doctors WANT you to start because they make a great profit on the medication, I also hear that almost 80% of all researched side effects stay FOREVER on your body and you may not feel as good as you ever felt.
Now my question:
I work out, have a great busy life, great relationship with my family and feel perfectly well, but my doctor is insisting that THIS IS THE TIME to start, since I am in my top brain/body performance.

Any ideas or comments?
Thank you everyone,
I really appreciate a input from you.
Best regards,
LCL

[Facta_non_verba]

First of all, I have to jump in and correct brazeagle. Doctor's make nothing, as in zero, on the medications they prescribe. They also make no money on lab testing or ordering studies such as MRI's, ultrasounds, etc. This is not my opinion; it's fact. As a surgeon, I am forbidden by law (Stark 1 and Stark 2 laws) from getting money from prescribing drugs or ordering tests or studies from a center in which I have a financial interest. The only financial incentive a doctor has in treating any patient is that they paid to do so. In Southern California the going rate is around 90% of what Medicare pays, which means $134 dollars or so for the initial visit and $70 or so for any followup visit. Nothing like people think, I'm betting.

Back to the topic. I finished 72 weeks in the middle of December 2008. A week later I started to feel better and a few months later I had gained the weight back, my hair thickened and my family could stand me again. One thing that was left over was bouts of fatigue that I couldn't otherwise explain. Several weeks ago I had some lab tests and found my testosterone level was on the low side and my growth hormone level was way below normal.

I started on testosterone and growth hormone replacement two weeks ago, and the difference is dramatic. Wow. I feel like I used to. I doubt this is the answer to everyone's problems, but it made a difference for me.

Jeff
Facta non Verba

[brazeagle]

Thank you Jeff, that made me understand the involvement of doctors and prescriptions, made me feel more comfortable and confident about the tx.
I guess as everyone else, I am really in doubt about the tx, since I am really feeling good at 41 and I was told by some patients who that once you do a tx, that is it, if you do not kick the virus out, there is no more chance, besides now having all kinds of side effects from the 48 weeks of the worst! Interferon.
I really do not know about it, it is just what I hear.
Thanks again and good luck,
brazeagle

Look at this site and video!!! SCARY about interferon!
www.lloydwright.org     (NO KIDDING)

[Tippyclubb]

First I would like to say you might get more replies to your questions if you started your own post, instead of attaching it it to someones else post.  Go to the top left side and clic on post a question.

Have you had a biopsy done yet?  If you have significant liver damage maybes that why the doctor wants you to treat now.  If you have not had one you should, because you can use the results as a guide in your decision when to start treatment.  If your liver damage is low you may want to consider waiting until the PI's are FDA approved to start.  Treating with PI"s increases your chances of clearing and may shorten your treatment time to 6 months.

There are many people who treated more than once with Interferon and Ribavirin.  I have heard its the new PI"s that if you do not clear you cannot treat with them again, because the virus will build a resistance.  Hopefully someone who knows more about this can give you more information.

I did 6 months of tx with Interferon, Riba , and Telaprevir (  Protease Inhibitor or PI ) and was undetected by week 4.  I finished tx a week ago and it was very hard and had many symptoms, but I was able to work and function.

I feel a vast improvement in the one week of being off tx.  No more symptoms at all, and my energy is returning very slowly.  I am still fatigue but that will improve in time.  When my energy returns I will feel normal again.  It was worth it knowing the virus in not destroying my liver anymore.

Good luck to you !

[brazeagle]

Thank you,
I have done a biopsy in Sept 07, after a real bad malaria, the results are Geontype 1A-B (conjugated), Chronic Hep C with Fibroses stage 1, portal 1, peri-portal 1 discrete and in activity. (Not much knowledge about this results). Also the 1A-B it says that it could be because NOT enough virus loud to detect the right genotype!

How bad that is? One doctor says I should start it and no longer wait, another says I should wait a couple of more years!

Thanks again for the input.
brazeagle

[Tippyclubb]

It appears you have low liver damage.  There are plenty others on the forum way more knowledgeable about  biopsy results and can explain it in more detail.  Having low liver damage gives you the option of waiting to do tx.  The reason you may want to wait is for the approval of PI's which I explained above.

Scroll up and on the top left side you will see post a question and start a new post with your biopsy results.  You'll get more replies that way.