Aftercare Incivek therapy

[johnr1]

Hi all
My tx ends in 12 days. I've had many of the side effects (moderate to severe).
I am looking for advice on post tx (ie: diet, weaning from paxil, and esp. follow up blood tests and med care).
I was "und" at 4 and 12 weeks and hoping for aanother at 24. My gastro doc (who has not been exremely helpful),
says he'll call with results, and if und again,for me to make an appt. in 6 months for a follow up VL test.
Doesn't sound very thorough to me.
Is there a protocol or articles about post therapy.
(started tx naive and genotype 1a)

Thank you much

[johnr1]

Thank you all, as always

[JasmineT]

Congratulations for finishing.  Ot an expert but from things that helped me... Keep up with the water.  As you can handle it, exercise.  Walking is great.  Four weeks+ out, try a steam sauna if you can and maybe a great massage.  Stronger exercise to sweat it out a bit.  Water.

Go bake on the beach a bit.  The fresh warm breeze was a great re
If for me.

At some point maybe start looking at things like vitamin b12 and NADH to get the memory and fog cleared out.  Eat healthy and of course avoid alcohol.

Stay away from sick people, places where sick people hang out like hospitals, and crowded places.  I had bronchitis at least 4 times within 6 months post tx.  Your immunity will stay low for quite some time.  The last bout was 5 months post.

Don't go to fast to soon but do start going.  Consider yoga.

Hoping you have a quick and easy recovery.  Feeling better than I have in years and hope you do likewise. :-). It takes a while.  4 weeks tolerable for me, 6 weeks post is better, 10 and 12 more so almost good, normal was closer to 6 months.  Great news is you will start feeling better.

[working dog]

don't get too anxious...first 6 weeks may not be great.....drink lots of water...for trouble sleeping i took advill pm...if your on an ad wean off slowly...in 3 months most sides should be easy to deal with....i feel better then i have for many years and my tx was loaded with symptoms...being hep free is really nice....ease back into things slowly....take it easy and good luck...billy

[Dawn703]

You have gotten some good nfo/advice. I would recommend a comprehensive metabolic panel on top of what else was mentioned. OH is right on with what she wrote. I also would add to continue drinking plenty of water, you won't feel as thirsty fairly soon after eot, so keep aware of drinking just as much.

[orphanedhawk]

My side effects post tx lasted for about 3 months, after 24 weeks of treatment.

The best thing you can do is exercise, eat well, as in healthy food, and stay hydrated. If you have specific problems you deal with them as they come up.

I do suggest some body work, deep tissue massage or acupressure to help release all that muscular tension that builds up during treatment.
Ideally, schedule a few, once a week, if possible.

[rambleon40]

"Any ideas on how long int/riba side effects last?"

Probably most (illness, fatigue) will begin to diminish fairly rapidly.  

Some are likely permanent, but are usually mild - "sub-clinical - you may or may not be aware of them, and if aware, you won't seek treatment for them.  Subclinical might be mild psychological "flattening" or mild cognitive impairment (just not quite as quick as you used to be) and mild arthritic symptoms in toes or other joints and swelling or numbness in toes.  

I have read research from Europe stating that almost everybody who takes interferon winds up with at least some sub-clinical permanent side effects.  

Some new ones may arise in the months after you stop treatment - arthritis, thyroid damage, other autoimmune disorders, etc.  If so, these may be permanent.  Odds are against this happening, but it's not 1,000,000 to 1; it's probably maybe 40 - 20 to 1 or so.

I would find a doctor who appreciates how damaging interferon is (not your hepatologist or gastro) and have them assess you six to 12 months post-cessation of treatment - white cells, platelets, red cells, etc, as well as thyroid function.  Other folks might recommend other tests.  

[Idyllic]

There's lots of people who are EOT who might have some pointers. I only treated with Peg/Riba for 19 weeks the first time and as I look back it took several months to feel like the drugs were out of my system. I wanna saw it took me close to a year to regain lost muscle and resume a dynamic cardio routine. It was frustrating at times.

Keep in mind there can be a difference between when the meds are physiologically out of your system and when it actually feels like they are. Like desert says Incivek is a big game changer and I am not sure if recovering is the same now as it was back then.

It will take a while for your lab values to rebound. The 3 and 6 month SVR labs will help you stay on top of those figures.

Hair loss can actually start for some people after treatment so do not freak out if this happens to you as it will not last.

Common sense eating seems good enough to me. Ditto with physical activity. Adopting some new interests might even help. Getting one's life back is different for everyone. The key is to hang in there and not hope for everything to happen too fast.

**About your antidepressant meds: there is no major hurry to be off them. I think you will intuitively know when you no longer need them. The doctor who prescribed your ADs out to be able to establish a titration period for you since stopping cold turkey is inadvisable with some ADs.

[desrt]

That's way different for everyone. For me, 22 weeks riba and 23 shots IFN, all blood work back to normal and back to full speed one month post-tx.

[johnr1]

Thank you.
Any ideas on how long int/riba side effects last?

[desrt]

Can't give you any Incivek specific advice, but after watching a couple of my friends go cold turkey off Paxil, I can tell you that's not the way to go. You should taper off under the direction of an MD who has experience with this.
As far as the PCRs go, end of tx and 6 months post are really all you need. Some people can talk their doc into doing a 3 month post-tx, which is fairly definitive unless you've got cirrhosis, but 6 months is pretty much the standard. Good luck.