Next Drug?

[Sangye]

(LOL-- the ability to digress from thread topics is a requirement in this group! )

My nose is redder than the surrounding skin and is a little splotchy looking. If I'm pale or cold or hot, it gets VERY red and hot. Definitely looks and feels inflamed.

[JanW]

What's really funny guys is that my nose too is a different color (like a sunburn) on the part that would normally not be covered by sunglasses. I always chalked this up to regular sunburn (figuring the nose is more sensitive) and I'm black so it's not particularly noticeable. BUT, I don't really burn anywhere else on my face. Wonder if this is all part of the WG puzzle (and as you guys know, my nose saddled about six months ago (this is discoloration is kinda good for hiding that, though!). And my crusting is minor too -- my collaspe all happened from the outside (didn't even know that was possible).

[Sangye]

My Wegs doc said my nose would probably never look "normal" again. It doesn't really look abnormal unless it's pointed out.

[elephant]

So were talking about discoloration. I noticed that my cheeks ( not butt cheeks) have been red in the morning. They get less red during the day, what is that about?

[Sangye]

I have that, too. After a shower my face looks and feels extremely sunburned for at least 30 minutes.

[jola57]

Same here, after a bath I look like a well done lobster, me cheeks are red as well as if I was running a fever. After a couple of hours it goes away

[Cindy M]

Hi Sangye, I have been on methotrexate, cyclophosamide and rituxan and none of them seemed to work so this is why they are looking into Remicade. I am probably having the wrong attitude here but I am getting so frustrated with everything that right now I don't care what I am on, not even too worried about the side effects, I just want something to work and to be off these preds.

[Jack]

Getting off Pred is an understandable wish, but most of us don't seem to achieve it. Or pehaps the ones that do stop posting?

[elephant]

I was wondering if using three or four immunosupression medicines in low doses would work to get WG in remission.

[Jack]

Before the combination treatment of Steroids and Immuno-suppressants they were both tried as individual treatments, but had a very low survival rate. However, drugs are developing all the time so I'm sure one will come along some time that can replace steroids or a new Immune suppressant that does not require them.