Re: CSS questions

[Guest guest]

Trudy, the primary treatment is steroids and if uncontrolled on steroids

then the addition of methotrexate, cytoxan or cellcept. The muscle pain

might be fibromyalgia which you could have in addition to CSS. If that is

the case then the steroids would not help your muscle pain but ought to help

everything else. I know what you mean about the weight gain on steroids. I

have and idea about this though if you want to discuss later. Do you have an

abnormal CXR or have your ever had one? ( abnormal that is?) Have your had a

CT of your chest and complete pulmonary functions? I too had just

unrelenting hives for several years before I was diagnosed with Churg

STrauss.When ever I lowert my steroids to less than 7.5 I get them back.

Have you had sinus surgery ? Am sorry about all your meds. I know what that

is like. I suspect if they think you have Css then they will want to take

you off Singulair. Carol

Re: 's Great News

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>> Trudy: I am probably a good person to help you with questions and

> issues re: Churg Strauss. I am a patient and physician with both

> Samter's and Churg Strauss.I am also the director /Founder of the

> Churg Strauss Association. ( WEb site will be up in a couple of

> weeks.) If I remember correctly you had a high eosinophil ct and

> symptoms suggestive of CSS. Let me know how I can help. Carol

> CSS

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> Carol, thank you so much for your reply. So far I haven't been given

> the diagnosis but it is what they are leaning toward. I have chronic

> sinus, polyps, asthma, hives which need to be biopsied, high

> eosinophil count and elevated sed rate, all over myalgia, fatigue. I

> am currently taking 60 mg. prednisone daily with no relief. Also on

> 40 mg. Ultram QID, Allegra 180, Sinulair 10 mg., Advair, Albuterol,

> Nasacort, and now today adding Atarax and Zantac. Geez, I feel like a

> floating pharmacy. My weight is now escalating without eating

> calories and my body feels like it is gonna just shut down soon, if

> that makes sense. Let me know when your website is up, as I would

> love to see it. I guess my main concern is the treatment available

> that is safe to use with my allergies and other meds. Trudy.

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