Re: skin sarcoid skin pain

[Guest guest]

Tim, I have not been able to find much on the skin lesions either.  But will share with you my personal dealings. I have lesions all over my body, and they too drive me crazy, if I'm tired they burn like crazy.  I was started on Plaquniel for the skin, it all started with a whole body rash that was on fire, it was awful, and the Plaquniel helped but I had to go to 200mgs twice a day.  Then a couple months ago, my doctor put me back on Methotrexate, (long story) and took me off Plaquniel, and my skin went crazy, so he put me back on 200ms, it helps some but not like it does at 400mgs.

So maybe if your doctor could increase your dose to 200mgs twice a day you too would get better. my most painful lesions are in my hair and face, yeah:) I also have an ointment my dermatologist gave me, it's called protopic, and helps when they are burning, it also settles the redness down some too. 

I hope this is helpful, let me know if you have any other questions. as far as showing your doctor poof, that is very hard to come by, I tell my doctor what has worked for others on this site, and he goes with it.

Tracie good results and sharing information with me is what got my doctor to agree to Remicade, She is such a Blessing for us all, and I so hate hearing she is not doing well. So try telling your doctor what worked for others, and see if that works for you, it did me.  This is such a rare disease, with such little information, that we just have to share what works for each of us.

I hope this helps, Marla

 

ok i have read conflicting reports and Dr and i don,t agree am not responding to plaquniel 200mg x once a day granulomas are really driving me crazy they cause me pain any documentation any where i have told him his info is old and not up to date just direct me so i can show him!! i need just some guidance on this