churg strauss

not strictly asthma, and know this is a long shot, but anyone here got churg-strauss? they've just decided I have this, after scary experience with what they thought was an MI. now have prospect of scary immunosuppressive drugs. would be interested to find anyone else who has it.

ali

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ali

hi only heard about it wen i went on singulair for ashtma a wk ago just bin dianosed about 4 wks. The side effects wher churg strauss and wos wondering if i have that and not ashtma cos since i started singulair i felt really ill and felt like i wos gettin flu and stopped using it. But i looked up on net about churg strauss and i have some of the symptoms and worried i have bin mis diagnosed. Wot are ur symptoms jeanette

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hi jeanetty, well my symptoms have been big deterioration in asthma, nasal and sinus problems, and now cardiac problems and a bit of neuropathy. but from little bit of info i have so far symptoms can be diverse. have you discussed your concerns with your doctor?

ali

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Hi ali,

I'm sorry to hear that you've been diagnosed with Churg Strauss, what a shock for you. I hope you manage to find a treatment that works and doesn't cause too many nasty effects.

I've been tested for Churg Strauss a number of times, because I have brittle asthma, severe rhinitis, a high eosinophil count and a polyneuropathy (but that is Critical Care neuropathy from a prolonged ICU admission). The tests have always come back negative, though, thank goodness, so it's thought that my eosinophil count is just related to uncontrolled allergic disease.

I have been on high dose pred and methotrexate for my asthma, both of which are also used in CSS, and whilst they are not nice drugs to have to take, often the fear and anticipation is worse than the reality. I do know quite a few people who are on immunosuppressives who tolerate them very well and find that they don't have too many nasty side effects.

Jeanetty - it's true that CSS is listed as a possible side effect of taking montelukast. It's not known whether the CSS is caused by the montelukast or whether it's just being unmasked by people coming off long term oral steroids as they gain better control over their asthma by being on montelukast - most of the cases of CSS where seen in people who were on long term oral steroids and then came off them once they went onto montelukast. Either way, it's an extremely rare side effect, and CSS is a rare condition. If you have concerns about any of your medication, you should discuss it with your doctor, but please don't stop taking anything without seeking medical advice.

Hope this helps

Em H

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thanks Emily. I'll be happier when out of costa and can do some research on it rather than getting frustrated with pantsline.

on positive side the rheumatology team are superb and I have loads more confidence in them already than ever had in my resp consultant. And with this diagnosis it should be poss to get the asthma under control.

ali