Bleh

**Psyborg** · 06-24-2011, 12:01 PM

Shortest remission ever...

So I finally got back to Cleveland and got a couple pieces of annoying news. First the rash I have is probably a small flare. I'm guessing caused by:
a) going off MTX for my surgery for two weeks
b) the surgery itself
or c) stress from work when the rash started (different job duties I got a bit worried about).

So I've got the MTX boosted higher now. /sigh

Further I screwed around with my Prednisone level to deal with the rash and have jacked up my system. Headaches and wooziness now. Dr Villa Forte wasn't happy that I'd done that, it was at the request of my PCP, but I didn't follow it exactly the way she said either so it's really on me there. So now I'm stuck back up at 10mg a day for a while as she said I'm risking a major flare monkeying with it.

On top of that they figured out that there has definitely been at least minor lung envolvement that was missed because we focused on the tracheal stenosis. So that made for a long day dealing with CT scan, labs and xrays too lol. And they want to do a Brochioscopy next month now too.

Bleh..sorry just need to vent on the cruddy day

**Sangye** · 06-24-2011, 01:28 PM

Oh no Bob, that's awful. Hopefully they can get things under control with "just" mtx and 10mg pred. I'm glad they're going to do a bronchoscopy and see exactly what's going on. SO relieved you're getting care with great docs. Hang in there.

**Psyborg** · 06-24-2011, 10:36 PM

My biggest fear is ending up back on CTX again, it really beat me down pretty good. She said I have a week for the rash to clear up before we need to talk further. Hopefully bumping up the MTX will take care of it

I just wish I'd not messed with the Prednisone at this point, but the hives that I got along with the rash were horrid. Apparently I'm allergic to my rash? LOL

**Sangye** · 06-25-2011, 12:38 AM

I'm wondering if they were really hives. A few years ago I had a small Wegs leg ulcer that exploded into a huge ulcer within a couple days. (It went from a dime size to the diameter and thickness of my palm) Despite weeks of doctor visits and going to a wound clinic, we couldn't get the thing to heal at all. It was horrific looking. Then in the area all around it I got tiny unbelievably itchy bumps. They were like little vesicles of fluid. I also got them on the soles of my feet. I can't even describe the pain of the ulcer or the intense itchiness of the rash. I felt like I was going insane at one point.

I saw an Ayurvedic practitioner at that point and she put me on some Pitta (Fire) reducing remedies. Some herbs, some dietary changes. The ulcer began to heal very slowly, and the itchy rash disappeared in a few days. The rash had been due to an excess of the Fire element--very common with rashes. A few weeks later, when the rash was long gone, I took a small bite of dark, unsweetened chocolate. Within seconds my feet began to itch ferociously! Chocolate--especially dark chocolate-- is a major Fire producer. It was proof to me that there is an underlying Fire imbalance with Wegs.

**Psyborg** · 06-25-2011, 01:00 AM

Good question there. I assume the ones are hives because that's what they look like, but I've only had hives once previously in my entire life.

I have really several things:
1) Little tiny red rash that does not itch but looks like broken blood vessels below the skin surface. This is the part I really think is Wegs.
2) Around my wound from the surgery, and eventually on scattered areas around my body I got little blisters that looked a lot like poison ivy. They said it was fungal, but it got worse with the fungal treatement everywhere but around that wound. These itch, but in more of a burning fashion, they feel like poison ivy as well as I'm very familiar with poison ivy having been a dumb kid that liked the woods

3) Big patches of red inflamed skin. This is the part that looks like an allergic reaction to me. I've had this show up around both of the other rash areas. But it gets out of control. When I went to my PCP I had this red rash with huge hive like blisters from my elbows to my fingers. it was so bad that the palms of my hands were in serious pain and even looked slightly bruised.

I know my diet has been jacked up recently. I'm having Pred cravings constantly and losing weight at the same time (one of the red flags that got me thinking flare myself). I need to figure out if I'm causing myself the problems with something I'm taking in.

**Sangye** · 06-25-2011, 01:02 AM

The #1 rash definitely sounds like Wegs. Have you taken pictures of all the rashes? It'll be very helpful for your Wegs doc.

**Psyborg** · 06-25-2011, 01:04 AM

She snapped some shots yesterday. The weird thing...the rash wanders just like the join pain. I've actually had this appear then disappear then reappear elsewhere. Weird disease

Luckily and unluckily the flare has resulted in no joint pain. Had I had any that would have been my first thought, but I'm glad to be able to move around still this time.

**marta** · 06-25-2011, 01:34 PM

Oh man Bob,

I think I probably would have done the same thing with the pred. I find that we get pretty good at knowing what's what with time and we'll only get better with experience. I was thinking what would happen if you took an antihisthamine (sp?) to see if any of the rashes are an allergic reaction. I know that while on pred and CTX I was allowed to take them and they helped with the sinus issues as well as helping me get some much needed sleep, but if the body is experiencing an allergic reaction to something that might help it clear up and eliminate one question at least.

Could the problems around the surgery wound be a location of slowed down healing - because of our super awesome immune system? I just had these things on my arm treated (my doc thinks they're warts and treated them as such) but they turned into these blistering, itching patches that have just started to subside in the last couple of days (they've been there for about 1.5 - 2 weeks) - quite ugly looking little guys, and super itchy!

Just trying to help in the process of self-diagnosis (something I feel like I'm getting quite good at) and anxiety surpression (something we all need to be good at to avoid stress related flares).

Take care brotha Bob. Hope this is just a passing phase and goes away as quickly as it came.

**vdub** · 06-25-2011, 04:09 PM

Dang, Bob! You probably taught me a good lesson here. I have my secret stash of pred for a special emergency, but maybe I should talk to the doc first, eh? I have been waiting for the rashes and broken blood vessels.... Its going to be in the calves of my legs -- I can feel it.... It's going to happen....

I had my MRI on the brain and CT of the lungs this morning. These two tests should tell if I'm in remission. On one hand, I'm getting my hopes up, but on the other, I don't feel like it's going to happen. I just feel like crap. I'm hoping its the mtx, but my VA doc the other day told that mtx shouldn't make you feel bad. That's not what the literature says, tho. Anyone else feel crappy when on mtx?