mremeet, how are you doing

Hey mremeet,

I haven't talked to you recently and I'm just wondering how you're doing with the rash and everything in general.  Pam's got two more hours and counting until she takes her last sugar pill.  You can tell what frame of mind she's in tonight. She's talking about putting em in her ice tea, 3 lumps, and hoping for the best.

Anyway, is your rash improving at all and are you developing that extreme puffiness from the prednisone that I have.  If this doesn't go down soon, I'm tempted to reschedule with Sulkowski.  I know it's only been a week, and my face is slightly less swollen but my neck and shoulders look like I have goiters, literally.  

Have you thought any more about the AD's.  I did a lot of reasearch before I was comfortable trying any of them.  So many different types and they do seem to serve different purposes - one size does obviously not fit all.  Are you going to spend a block of time and just research the hell out of them?  I'm really interested to know what you come up with.  Just don't get discouraged.

Hope you're doing well, Charlotte

[mremeet]

Hey char, I'm doing ok I guess. Up until yesterday, the rash has continued to subside/fade, although I still look like a spotted leopard. And my skin is very dry, flaky and sensitive, especially on my face and scalp. I've tried putting moisturizers on my face, but they just seem to irritate my skin and make it burn. So I just don't use anything, and have super sandpaper alligator skin as a consequence of that. I'm going to make an appointment with a derm soon and see if I can get something for it. The itching comes and goes. Yesterday it was really bad, but I took a benadryl and then a claritin D and it seemed to really help, plus I wasn't too zombied out.

As far as today is concerned though, things are a bit touch and go right now as I type. I've tapered down to 10mg today on the prednisone. As you know that was the threshold where the rash ferociously resurged last time. I feel more "tinglies" today and have noticed some brightish red speckles reappearing on the tops of my hands and in a few other isolated places. My face feels hot and scaley, somewhat similar to how it felt before when the rash was active. But I keep examining my rash overall as a whole every hour or so and I can't say it has "resurged" just yet. I'm *really* hoping that isolated little flare ups like that are just harmless transient effects of coming down on the prednisone. I hope so dearly that when I wake tomorrow, I won't be greeted with those burning awful welts all over me again. I'll just flip the flock out if that happens again! So I'm in a very tenuous holding pattern right now. What happens in the next few days will determine if I can continue on with the study or not, so obviously I'm very worried this rash will come back and force me to drop.

As far as the pred-puffiness: My cheeks are somewhat puffed up, but I have a fairly narrow face, so it isn't very noticeable on me. But in general my face is inflamed/puffy, I can clearly feel it when I put my hands up to my cheeks, so I'm really ready to get off this ****. As far as the A/D's, I'm going to get a consult this Friday and see what comes out of it. I haven't researched the A/D's very much at all, not sure I'm going to put that much effort into it either. From what I've heard there is no way to know ahead of time which one will be likely to work well for you. You just have to try one out and see what happens. Although from what I've heard lexapro sounds like it might be something to try, so we'll see. If I can finally put this rash behind me, I'm hoping to get away with something like Xanax once in a while instead of an all out A/D. But at this point, frankly I'm tired of being so miserable. The notion of possibly going 48wks dealing with the stuff like this rash makes me think I better give a true A/D a shot.

Anyway, thanks for checking in on me. How's your rash coming along? Hopefully it's behind you for good. I'll call you later today so hopefully we can catch up. ciao

[prettydamscared]

I truly hope it's not resurfacing too.  I've definitely experienced some of that as well...the tingling, itching sensation on my scalp and the start of the creepy crawly feeling.  I'm still itchy as well but nothing like before.  The rash that I had before is pretty much gone.  I still do have rash but I believe it now really is the "riba rash" that everyone speaks of.  It's small, sort of hard little bumps that itch like hell but the itching does seem to dissipate somewhat when I keep my skin well moisturized. I'm not taking any prednisone and haven't since last Monday.  However, I can relate to the feeling of the old rash starting to come back.  It's scared me a few times but so far, hasn't really reared it's ugly head.  With any luck, your's will continue to fade and not come back.

When the skin on my face gets really super dry, I'm actually using Aquafore, which is basically vaseline or petroleum jelly.  You can't go anywhere with that on your face, but it does seal in whatever moisture is there and protects it against further dryness from our heating systems or whatever.  There's a website called cosmeticscop.com.  The woman who created it is Paula Begoun.  She's written a lot of books and reviews women's beauty products.  Anyway, she makes a product called body butter that has no fragrances or anything that irritates sensitive skin.  I've been using that when I get out of the shower and I really like it.  I'm finding I can't use any products with any fragrance or irritants at all and that includes almost everything.  You might want to check out her website.  She is credible and offers inexpensive products without irritants that  do contain ingredients that are good for our hyper-sensitive skin right now.  

I'm glad you have an appointment on Friday and I do agree with you.  It's gonna be trial and error to find the right A/D.  I have read and heard a lot of good things about Lexapro.  It just totally made me feel like I was tripping or I would probably be taking it now.  

Let me ask you, do you have an updated consent form?  Mine is dated may 30, 2006.  APKhaos posted to me earlier today that he/she has an updated form with a new follow up schedule.  I still have the original follow up schedule which makes no sense.  Basically, you can tell exactly which group you're in by the follow up schedule.  

I talked to Dr. Sulkowski today.  He reiterated that he felt my rash was definitely not caused by the riba and so far, he's right.  It hasn't come back and I have been back on the riba since last Tuesday.  As he said, I never was really off the riba.  It has such a long half life, it was not even close to being out of my system.  He's going to let me know tomorrow if the monitor will let me get Procrit before the 12 weeks are up since I'm now off of the vertex.  I can't see any reason why that should be a problem but we'll see.

Are you giving it another few weeks before you go back to work?  How are you doing with the time off....is it making you crazy yet?

Let's try and talk soon.  I'm gonna keep my fingers crossed for you with that rash.  Tomorrow should be a pivotal day. Let me know what happens.

Char