Any ideas for skin problems?

[catqueenjune]

Hi all, what a great site!  Wish I'd seen it like 6 months ago, when I started tx (Feb) but I probably couldn't have understood what I was reading anyway.  The tx is kicking my butt.  With Type 1 and a 40% chance it still seemed like the best thing to do.  I believe I got this from my late husband during his last two years of life, he had liver cancer at that point and I was his primary caretaker when he had his first attack (he threw up a lot of blood) and his last attack in Aug of 2006, at that point I had no idea how easy this was to spread and I was so focused on his quality of life that I didn't use gloves or anything.  I also read this year if you share a toothbrush you can pass it that way, and I know I did that dring those two years.  So last Oct I finally was tested and it came back positive.  We did an ultrasound (no insurance so no biopsy) and it came back I have a healthy liver, praise God.  Okay so other than all the weight I've lost my skin, esp around my mouth is just going nuts.  I was put on Acephex at one point and developed edema all over my body.  I still have scars on my shins.  From the beginning I've had problems with my mouth, my lips sticking to my teeth, drooling while I sleep and last month a rash on my face that made it next to impossible for me to open my mouth.  I am using muciporcin (sp) and ointment and taking acyclover 3x a day, ugh.  I'm SO sick of taking pills.  My face is still extremely itchy but the rash has abated quite a bit.  I tried everything on my face except garlic, everything hurt to put on it so I was treating it with teatree oil, straight and it slowed it down some, of course it hurt like the devil too.  Sorry I'm going on so, I've been looking for a group/site other than Be In Charge which really doesn't have much info on it and so I'm going a little overboard here.  Thanks for any help.  

[catqueenjune]

Thank you for pointing out to me that it sounded like I'd lost my skin, there should have been a comma after all the weight I've lost.  You are entirely accurate on what my DO diagnosed, a herpes type flare up with an infection.  I noticed a number of members are in clinical studies where they have their blood work and everything covered, I do not have insurance and all my bills are out of pocket.  I do get the interferon and ribavirin from Schering Plough for free but otherwise....

When I researched the rash I thought it was angular cheilitis from the pictures I found on the web, and it's common for people with autoimmune suppression to develop this, however as I said my DO didn't agree with me so I'm following her advice altho I'm also using nystatin swish and swallow, I take pulmicort for my asthma and it triggers thrush/fungal mouth problems too so I do feel a bit better.  I will look for coconut oil at Vitamin Cottage today to assist in healing my flakey, itchy skin.

Thank you all for your kind comments and support.  It truly means more than I can say.  

[jmjm530]

Many skin conditions mimic each other so you need to see a skin specialist (dermatologist) for a proper diagnosis which is the first step to proper treatment. Most GPs and liver doctors only have limited knowledge on skin conditions and often over or under-treat.  Self-care, if that's what you're doing, can often be counter productive. You have enough problems on treatment, don't make things worse for yourself.

-- Jim

[Kristina538]

Congrats on getting through since Feb - well done, especially with what's happening to your skin.

Have you contacted your medical team and let them know??  It could be that they know exactly what you are describing and may be able to help/adjust/prescribe what is necessary to give you some assistance.   Best wishes and hope you manage to get some relief.  Keep us posted :-)  

[CoWriter]

"I've lost my skin, esp around my mouth is just going nuts."

"and  last month a rash that made it next to impossible for me to open my mouth"

One of the things I would highly recommend is trying to give a good description of the rash or symptoms you're having.  Saying, "I've lost my skin, esp around my mouth is just going nuts" is very confusing... there's no way I can figure out what you're trying to say.

Let me give you an example.....

If I was going to describe a rash on my face, I would say something like.....

small red spots with tiny white heads covering the forehead, area around the mouth and chin.  They are very itchy and if I scratch them, they drain clear liquid.  I've had them for 2 weeks and they don't seem to be getting any better.  Heat and sun exposure makes them worse.

You see what I mean?  It sort of gives me a mental picture.

The reason I'm saying this is because the Muciporcine ointment (Bactroban) you're using is used for BACTERIAL skin infections.... while Acyclovir is an ANTIVIRAL...used to treat shingles/herpes (which look like BLISTERS).

And I really doubt that you have both a BACTERIAL and a VIRAL infection on your face at the same time.  

[Rockerforlife]

Try organic coconot oil...what kind of foods are you eating...its very important to get the right nutrition while on tx.

[Marcia2202]

Just wondering, are you drinking enough water? Drinking loads of water... I drink almost 4 liters (1 gallon) per day. that should at least alleviate the dry mouth and hydrate you more, thus also helping with the skin problems.

Marcia

[Marcia2202]

I have no experience with the rashes, but I just wanted to wish you welcome to the forum. I'm sure there will be someone chiming in soon, who has had or is having these side effects.

Marcia