Finished treatment a week and a half ago

[kf210]

Hi --
I finished 48 weeks of interferon and ribavirin a week and a half ago, thank God people will not have to endure that one in the future.

And I can see I'm doing better because I'm now back to sending emails, being online and communicating with people, I have a little more energy and interest in life. The dry mouth and extreme thirst has subsided. Appetite is coming back.

But I have 2 rather pesky issues.
One is this rash on my face. It's a cycle that started several months ago. I get tired or stressed, I rub my eyes and other skin on my face, the skin just disintegrates and oozes, accompanied by swelling, eventually drying and flaking and peeling off. It itches like crazy and I just do what I can do. As soon as it heals, the cycle starts over. I know the skin has thinned from the medication and even my fingernails are weak. if I scratch my leg, for instance, the skin just comes off, and then takes eternity to heal. If I put any ointment on it, I have a skin reaction and it makes it worse. It looks bad out in public, and it makes me feel like my head is in cotton, plus the itching and the pain, etc.

About 2 months ago, a nurse friend of mine suggested prednisone. I checked with my doctor, got a prescription and it works like a charm. Within 2 days it's clear and healed. Pretty amazing stuff. However, I hate the feeling of prednisone. My heart races, but the worst is it causes insomnia, which I already had such a problem with during treatment. I do not like the idea of being dependent on a sleep medication. So with the prednisone, every time I finished a course of it, about 2 or 3 days later the rash started again.

So now I am post treatment, and I went off the prednisone, and the rash faithfully came back. I know it's going to take time for recovery. I understand it will take several months, and since I had such a bad time on the tx, I'm not expecting things to magically get better right away.  (although, it would be nice)

My other problem is the insomnia. It has gotten better, I tapered off the meds, and by the time I got all the way off them, I just wasnt able to sleep well. There is some improvement, on treatment, if I didn't take a sleep medication I would sleep 0-3 hours per night. Now I can sleep about 3-5 hours, very light somewhat disturbed sleep. But my body is beat. This week I have had diarrhea, nausea, some fever, chills, I know I need to get more rest. I need to be able to get rest. I can't get rest, and it's stressing me out psychologically, and leads to more rash, and leads me to then have fear of not getting sleep, thereby exacerbating the problem.

I am in a doctor's care. I'm going to see him tomorrow. I have a feeling he will extend the sleep meds.
I so want to be free of all medications. I want to fully detox. But what can I do? I am also on antidepressants. I don't dare even consider going off them now.

Sometimes I obsessively search the internet for information about my challenges, and I see that everyone is completely different, there is no one way to deal with these things because of that, and that recovery is going to take time, and it will get better.

So I guess what I'm asking is, does anyone have anything to share about improvement of rashes over time after tx, and can anyone share their experience and advice about post treatment insomnia.

Thanks everyone. I'm really grateful that I even have the energy to write this. That in itself shows improvement.
My best wishes to everyone.

[mhudnall]

I second this opinion. The rash is autoimmune and for me it decreased over time, but it does still pop up occasionally, in a much lighter form. The thing about those old drugs - they said that they might cause depression but the truth is they caused actual psychosis. The longer you are off the drugs the more things will improve. However you are right to be concerned about forming a dependency on the new rescue drugs and staying on them too long, so try to wean yourself off them over the next six months like Pooh said.

Both the virus and the tx are known to cause nutritional deficiencies, so good diet will help, vitamins and supplements, lots of greens and juice (preferably from greens and vegetables, not too much fruit-too much fructose). Eventually you will be able to start exercising mildly which will help your sleep. That is a rough year you just went through so take it easy and be kind to yourself, but be assured that it can get better from here.

In a way you are walking that path backwards, so let your body do the work and try to help it out as much as you can.

I don't know where you live but if its available to you, you might ask your doctor if medical marijuana would be useful to help wean yourself off the psych drugs.

Good luck!

[otterwatcher]

you got it! that's exactly how you should look at things,you're still poorly,it takes time and care.Be gentle with yourself. Very glad the rash is better,I'm sure it will resolve itself soon.
All the best.

[kf210]

Thank you both for your comments. I have given them a lot of thought, and I appreciate you taking the time to give me a response.  
For some reason, my rash is doing better today. And my doctor is continuing me on the sleep meds for now with a referral to see a specialist tomorrow.

Today I feel a lot more accepting of my situation, which is: I'm still not well but I'm going to get better with time. I'm under a doctor's care whom I feel genuinely cares about my health. No need for me to get anxious. But even if I do get anxious, I can post on one of these boards and get support. One step at a time, as they say.

[pooh55811]

Congratulations on finishing Tx.

It is very early post treatment for you and it takes several months for the drugs to get out of your system. I am almost 2 years post triple med treatment with Interferon, Ribavirin, and Incivek. I had major skin issues of all sorts while on treatment. I was on Fluocinonide ointment, Hydrocotisone Valerate cream, Clobetesol Soln., and Hydroxyzine 50 mg every 6 hours during Tx. After Tx I gradually decreased the amount of stuff I was using as the rash and itching improved.I still have some skin issues, but they are vastly improved. I am no longer on any medications for them. In fact, I think the skin issues from the Hep C Tx are gone and the issues I am left with are due to my Autoimmune condition, Sjogren's Disease.

Yours will probably improve over time and may entirely disappear. In the meantime, if I were you, I would see a Dermatologist for treatment of the skin issues. They are better equipped to know about and deal with dermatological issues.

As far as Depression and Antidepressants, I stayed on Antidepressants for about 6 months after treatment and then tapered off of them. I have been fine since. Everyone is different, however, and you should probably discuss this issue (when you will taper off and how you will taper off) with your Psychiatrist.

Insomnia can be a problem. I really never had a problem with it but I was on Hydroxyzine 50 mg every 6 hours so I think that helped. And I tapered the Hydroxyzine for months following Tx because I had to taper slowly due to rash and itching issues. As you get further out from the end of Tx, this issue may resolve by itself. However, the insomnia issue is something else to discuss with your doctor.

I hope you will feel better as time goes on. Most of us did.

Wishing you the best.

[otterwatcher]

hi,sorry to hear you're feeling so rough but it is early days yet,most folk take about 6 months to feel better-you've been through the mill!
I can't help you much on the skin issues.I do take a daily antihistamine to help ease the itching that I've had since treatment which helps a bit and I'm  still having problems with sleep like yourself even 8 years on but most folk even out after a period of time. All I can say is that hopefully things will begin to resolve themselves,do make sure you are eating a healthy unprocessed diet,taking a multi vitamin and mineral to help boost you back-many people have had mineral/vitamin deficiencies post treatment.
Do hope things start to improve for you soon.