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#21 | |||
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Junior Member
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It is difficult to taper off the steroid...1mg per month decrease is not uncommon in order to allow your body to adjust slowly. I have had increased eosinophils for years, but after a bad lung infection, I started having higher levels and more symptoms. I was diagnosed with sinus disease (the sinus behind my eyes is completely "shot", and the other two are in very bad shape, I have severe lung disease w/infiltrates, skin rashes that comprise mostly of eosinophils, and PN. The best thing to do is taper off the pred slowly and then have your labs done while you're off of it. They should also do a Sed rate and an ANCA test to see the results of those. There are six criteria that usually have to be met in order to be diagnosed with CSS and I'm not sure the exacts, but they can be found on the CSS association site. But, you should get copies of your labs and go over them yourself....my doctor never told me about many years of bad labs that should have been monitored. I do have the pain down my legs too, not sure if it is the PN or EM, I just attribute it to walking funny from the EM pain--and stomach pain has been ongoing....I haven't had mine looked at yet either, but hopefully will soon....I do hope you don't have CSS--unfortunately, the treatment for it is prednisone or another immunosuppressant. I'm sorry you're going through these things and hope you find some relief and answers. Nice to meet you.
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God Bless!! (¯`v´¯) ` .¸. ´ ¸.• ´¸.•*¨) ¸.•*¨) (¸.•´ (¸.•´ (¸.•´`•¸¸.•¨¯`•Tina Atlanta, Ga. Peripheral Neuropathy, Erythromelalgia, Churg Strauss Syndrome |
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"Thanks for this!" says: | zygopetalum (09-16-2011) |
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#22 | ||
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Junior Member
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I understand how frustrating it is to have pain and search for answers without finding them. I too have been searching for an answer. Mostly my pain if from EM. I have tried most all of the things you have but with one exception. Someone mentioned that antihistimines helped (claritin specifically) and I figured it wouldn't hurt to try and to date that has helped me the most. Flares now are almost non existant unless I stand too much or walk too much in which case there is nothing that will help. I don't know if this might help you or not but thought it was worth mentioning. I was really grateful for this tip, it has changed my life. Good luck. |
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#23 | |||
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Junior Member
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Anywho....Yes, I have been on antihistamines due to the CSS-it is an "allergic" type disease. But, these do not help my burning at all. I sure wish mine would be that easy!! That's great that you have found them successful.
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God Bless!! (¯`v´¯) ` .¸. ´ ¸.• ´¸.•*¨) ¸.•*¨) (¸.•´ (¸.•´ (¸.•´`•¸¸.•¨¯`•Tina Atlanta, Ga. Peripheral Neuropathy, Erythromelalgia, Churg Strauss Syndrome |
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