Churg/Strauss Syndrome

[Guest guest]

Hello Group!

I was wondering if anyone in this group knows much about Churg Strauss

Syndrome.

I have specific reasons for asking...

I've mentioned to the group in the past, that before Xolair came into my

life, I was completely steroid dependant, at 60mg of Prednisone a day, and

even at that dose, I would frequently end up admitted to the hospital on IV

solu-medrol.

Beyond that, for several years, cycling on and off, I have had severe

tingling/numbness in my arms. More often it is my left arm, and along with

the numbness cycles, I will experience bouts of extreme muscle pain/aching.

This isn't constant, but will occur only during the cycles of numbness, and

is excruciating. The only relief I get is to take strong muscle relaxers

and high dose vicodin together. I'm experiencing a bout of this now.

Ages ago, before starting Xolair, out of curiosity, on the medical websites,

I typed shortness of breath, numbness, tingling, granulomas, and rashes into

the search bar. Churg Strauss popped up on every single one of them.

Now, I'm curious, because I don't know much if anything about this illness.

My granulomas have been limited to my feet and hands thus far, to my

knowledge, I don't have any on my internal organs, but honestly, I've never

asked the doctors to go searching either, not knowing that they could be

related to my lungs.

My dermatologist seemed incredibly shocked that I could have granulomas at

all given the high doses of steroids I had been on in the past...

Xolair has been working quite well for me, but I say that compared to how I

was in years past. I will admit that recently (since pollen season has

begun, and with the recent wet weather in the northeast has caused molds to

increase dramatically) I have been incredibly short of breath. My oxygen

level has been very low (for me) and I am constantly coughing and wheezing

again. It has been suggested by my primary care that I run a course of

prednisone, but being stubborn, I wanted to see if I could make it though

without steroids since I worked so long and hard to get off of them and to

lose the weight that went with it. It's been a struggle, I'm back to

nebbing every 4 hours without fail, and am NEVER completely clear. I did

increase my advair.

What I do know of Churg Strauss, is that it causes steroid dependancy... I

don't know too much else about it. I'll admit that for the first time in my

life, I'm afraid to ask my doctor about it. I don't want him thinking that

I'm looking for more problems.

My neurologist has been screening me for Multiple Sclerosis for the past

several years because of the numbness and tingling in my arms. My mother

and her brother both have MS, so I think it was natural for him to jump to

that conclusion, and for my other doctors to do the same. Since Churg

Strauss seems to be so rare, is it possible that this is something that

could have been overlooked, or is it possible that I am in fact reaching?

Any opinions and or information you could all give me would be greatly

appreciated. I'm not usually the type to be timid and shy around my doctors

and I'm usually incredibly knowledgeable about my illness. I think I'm

afraid of being shot down when it could be the most important time ever.

Thanks in advance