stopped all meds, rash and anemia continue

[cassy161]

I finished the Incevik three weeks ago, and am undetectable.  Unfortunately, the rash that I developed two weeks after beginning treatment got progressively worse, which caused me to stop all meds.  I am still suffering from severe rash all over my body.  My face and eyelids have continue to peel, as if from sunburn and yesterday I woke up with pink eye.  Blood work yesterday shows that my red blood count is hovering around 9.2, my white cells are just begining to return -- 2.4.  Can anyone tell me when I might begin to feel relief from the rash and when my anemia might remit?  Also, is my Help C likely to return if I stopped everything at 12 weeks?  This is just so difficult.  Thank you!

[cassy161]

Thank you for all of your comments.  I appreciate them.  I agree that the MD should have referred me to a dermatologist, or a PCP, even, to help manage my side effects.  I think the problem is that so many people are now being given the new meds, that the doctors are not adequately managing them all.
I will see my GI doctor on Monday and ask for another viral load test.  Thanks again for all of your support.  My rash is better know that I've been taking prescription antihistamine and lotion.  Wish I had done this sooner, so that I wouldn't have stopped meds prematurely.

[Dee1956]

Everyone above has given you excellent advice, I am  happy to hear you were UND at 12 weeks.  There are a few members here who could not continue past the 12 weeks due to rash and they remain UND.  That is not to say you will be the same however I wanted you to know it is possible.
Are you still drinking a lot of water?  Also Atarax, Hydroxine really helped me when benedryl did nothing
I am beginning to think that many doctors who are treating patients do not know what they are doing.  As others have said, the rash has to be treated asap before it gets out of control.
When I was itching I also used used ice packs or frozen wash cloths to calm the skin.  It could help you as well.  So sorry you are going through this

[ceanothus]

And you might have been UND at 8 weeks, but no blood work was done. I get so angry when I hear about this kind of thing! That 8 week blood test would have provided really valuable information and is very much part of the standard protocol for tx, but some doctors choose to ignore the recommended protocol. If I said what I thought of them medhelp would probably delete my post for obscenity! 

Sorry for that outburst. I just wish we could say you have a great chance of SVR, but I'm afraid we don't have enough info to really know. You might still achieve SVR, but I don't know how likely it is. How is your rash now? Have you seen a dermatologist? It really is something to take quite seriously - with a systemic rash more is affected than just the outer surface of your skin. It can actually cause severe damage to internal organs as well, and sometimes leads to death. It's a really scary side effect and not one to just watch and wait on your own. Please be careful!

[cassy161]

I was UND at week 12.

[nan535]

Yes, Pooh is so right.  When my husband was given neomycin for his hepatic encephalopathy, the only clues we had that something was going very wrong (within three days of starting it) was the rash he got and the swelling of his legs and feet.  Same goes for the Xifaxin prescribed for the same thing. Everyone is different. What works for one may not work for another and can actually be deadly.  You must pay attention to your own body and act on it.
Nan

[Advocate1955]

I wholeheartedly agree with Pooh. Several forum members had to stop treatment early due to rashes not appropriately managed by their docs.
Advocate1955

[pooh55811]

"If I had a rash all over my body, I would, before letting any physician put any further chemical (antihistamine, steroid, etc - goodness!!) into my poor body, read "In Defense of Food" and Pagano's book on psoriasis and give some of those concepts a spin for a month or two."
-------------------------------------------

Not quickly and appropriately treating a generalized body rash that one knows is due to a drug reaction could result in death. Systemic drug reactions are not something to fool around with.

If one has a little psoriasis or eczema or a few little bumps, then a person may have time to check in to all of the possible treatments. However, if a person is having a systemic drug reaction to a medication they are taking, (and that is what these rashes are), then that person needs appropriate treatment immediately, not in 2 months time. By appropriate, I mean prescription antihistamines, prescription steroid creams, and even systemic steroids if necessary.  Left unchecked, the drug reaction, which is systemic in nature,  just gets worse.

Many, many of the people on this forum would not have been able to complete treatment if their drug induced rashes were not dealt with immediately and appropriately with prescription antihistamines, steroid ointments/creams, and systemic steroids if necessary.

Eating well and eating real food is a healthy avenue, but it is not going to get rid of a rash that is due to a systemic reaction to a drug that one must keep taking for weeks and months if one wants to finish treatment.

[rambleon40]

How do you know that the rash would not become permanent and / or worse if she stayed on treatment?  !!??  

[rambleon40]

If I had a rash all over my body, I would, before letting any physician put any further chemical (antihistamine, steroid, etc - goodness!!) into my poor body, read "In Defense of Food" and Pagano's book on psoriasis and give some of those concepts a spin for a month or two.  


If I was a Hep C newly diagnosed, I would do the same and give those concepts a year or two (it takes a while for it really to sink in that most of what most people eat is not food) before doing interferon therapy.  Your body's own natural response may surprise you.

We have a health system that pays no attention to food, and a food system that pays no attention to health.

[Advocate1955]

I'm not understanding if you already stopped Interferon and Ribavirin or if you're thinking about it.  You are done with the Incivek, so the rash should improve, although you may still have rash problems with the Ribavirin.  If you haven't already, don't stop taking your other medications until you talk to your doctor.  If you have stopped taking them, don't start taking them again until you talk to your doctor.  If you haven't stopped taking them, call your doctor's office as soon as possible and ask what to do.  Ask for a referral to a dermatologist who is knowledgeable about Hep C treatment and who can consult with your Hep C doc.
Advocate1955

[Idyllic]

Detectible at week 4 + No labs at week 8 = I do not understand what week you were finally found UND.

[Pepela]

My doctor gave me Triamcinolone Acetonide Cream USP 0.5 for rush. It definitely helps.
Do not stop treatment in 12 weeks!!! It may relapse. Finish 24 weeks. My hmg is 8.5 and I am still going. It is hard, but this is our chance to get better.

[willbb]

Hi cassy;

pooh has acurately addressed  the rash and possible treatments for such  and I would concur fully that a visit with a "dermatologist " should be imminent.

You say: may go back on the Riba and interferon, if I can get the rash to calm down
--------------------------------------------

I would certainly not advise this as 1) it may be the Riba mostly or partially responsible for the rash and 2) you should have a PCR immediately to ascertain viral load.

If there has been a breakthrough ..continuing the combo INF /Riba would more than likely be futile with a three week cessation of all meds.

Always best to discuss this with your treating physician however and hopfully he is very knowlegable about the HCV tx. paradigms.

Good luck..
Will

[cassy161]

Thank you for your comments. I am 57 years old. I was detectable, but unquantifiable at 4 weeks.  There was no blood work performed at week 8. I was at stage 1 of fibrosis at last biopsy.  I had one prior trial 5 years ago, Riba and Interferon.  I had to stop at 6 months due to severe rash. I got rid of the virus at the time, but it returned. I may go back on the Riba and interferon, if I can get the rash to calm down. I will see about a prescription for antihistamines. I had been taking over the counter creams and antihistamines with no relief.  I do have a prescription cream for the pink eye, which has still not gone away.  Thanks for all of your posts.

[Advocate1955]

I would recommend that you ask your doctor for additional suggestions, but staying out of the sun, drinking lots of water, keeping your skin moisturized, and avoiding any triggers that make the rash flare up (for example hot water, spicy food, coffee, if any of those bother your skin).  As Pooh said, hydroxizine to calm your system down, and a topical such as triamcinolone from your doctor might help as well.
Advocate1955

[LookingForward12]

That is prettyt what happened with me symptom wise. My rash lasted for about ten weeks altogether, having started at week 8 of Incivek. I did. Ot stop all treatment however.I stopped Incivek five days early. Rash still progressed. I received a steroid shot. It did nothing. I changed steroid creams...nothing.

My doctor reduced my ribavirin to 200mg a day. I had reduced interferon shots for somenweeks ( from week 14-17, 20, and 22). I had to take a course of diminishing dose prednisone for two weeks - that was the only thing that caused the rash to get better.

The key for me was staying on treatment even with all the dosage juggling. I peeled all over my body from my scalp, my ears, to torso, even the bottom of my feet! I peeled all the way through EOT at 24 weeks...and am still peeling now in areas. I still have skin issues. I.figure if I keep peeling then one day my skin will be back to normal.

I believe michael had to quit all meds like you and is still UND several months down the road.

[ceanothus]

I'm chiming in to add support to Pooh's comments. Your rash is unlikely to improve very quickly without Rx drugs to help beat it into submission. Mine has only ever been a mild rash but it still requires Rx steroid creams to keep it manageable, while on the other hand we've heard from a number of other forum members who had to quit early because of a severe rash, and at least some of them (if not most) have reported that the rash didn't improve until their dermatologists gave them steroid injections as well. Get thee to a dermatologist ASAP – some of the severe rashes can become life-threatening so don't wait to see what happens.  Best wishes for SVR, but as Pooh said, we'd need to know more details before we could even guess whether your odds are good or poor. Keep us updated on how you are doing!

[rainypass]

I wish I had answers for you, it sounds like you have had a very difficult time and just wanted to offer some moral support. Only time will tell if the hep C will return, I know that it can take time for the meds to be out of your system and for your body to get back to normal. Hopefully you will start to see improvement soon and that your Dr is keeping a watch on the rash and offering some relief on this uncomfortable situation. Others members here may be able to offer some advice on how to deal with the rash.