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British Lung Foundation
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Apologies

Hi everyone someone posted to me recently looking for advice and I can't find what I've done with it! Please send again so I can help; it may have been Churg Strauss related.

Well had 1st Lidocaine infusion for pain in hospital yesterday to hopefully get 2-3 days (after 16 months of pain 24/7) respite from pain, but sadly only numbed all over body pain from this auto immune Eosinophilic asthma complication for 12 hours! Also Methotrexate and now Azathioprine on top still not achieving any kind of remission from this disease. Warned by Rheumatologist some Churg Strauss patients never respond to treatment and as my kidneys are not in good shape either think Cyclophosphamide might heading my way arrgh! See my renal consultant beginning of next month to see what can be done about blood and protein in urine for last 8 months and how much kidney damage done. Please wish me luck I need all I can get but still smiling and enjoying the best I can each day :) xx

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Wishing you luck, meganoscar123

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Thank you Ergendl I know my disease is a tricky one as it silently marches all over major organs unless chemo can suppress immune system, nearly a year into treatment with no sign of remission but we must manage with the hand life deals us!

I still find something each day to feel blessed about :)

Hope you have a lovely weekend, your kind thoughts are much appreciated. xx

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Hi, 3 weeks before being diagnosed with Churg-Strauss in Jan 2009 I was in a lot of pain and given increasing doses of pain relief. I then had Azathioprine and steroids for 6 months and Tramadol was prescribed for excessive pain. However, after 20 months I relapsed then treatment changed to Cyclophosphamide and steroids for a further 6 months which my system tolerated. Since then I have been tolerating Mycophenolate Mofetil, initially 1g twice daily which, after a flare Dec 2012, was increased to 1.5g twice daily - From Jan 2017 this has been reduced to 1g twice daily. I am prescribed Pregabalin to calm the pins & needles feeling in hands and feet (100mg morning, 200mg evening), Lansoprazole 15 mg once daily, Clopidogrel 75mg once daily (GP changed aspirin to this), Flixonaze inhaler drops and my daily asthma inhalers. To relieve nasal congestion/crusting I douche daily (morning and/or evening) with a premixed nasal rinse sachet. Taking Flixonaze irritated my mucus membrane causing blood loss so my GP suggested including the drops with the douche mix which works fine. Premixed nasal rinse sachets are expensive, alternatively a nasal rinse can be made up using a simple guide obtained from the GP/Nurse Practitioner.

Not sure if any of this helps but I consider myself very lucky to have a rheumatology consultant familiar with Churg-Strauss syndrome which, after a few days in hospital induced a TIA leaving me with a weakened left leg. This added to the peripheral nerve damage that has left practically every muscle in my body partially numb and weak. Other than that I'm doing fine.

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Hi Derek so good to hear from you and that you are doing so well! I only have one other person I know in UK with diagnosed Churg Strauss! Like you I have tried all kinds of pain relief Fentanyl (I'm allergic to pure morphine) Tramadol, Pregabalin and Gabapentin (zip use other than feeling like gone to 3 parties in a row!! and put on loads of weight) and Amyitriptiyline all to no avail. I was given the stock reply by my Prof Rheumatologist in London that I have CS with Fibromyalgia, which my pain consultant said is not true, it is CS weaving it's merry dance in my muscles and joints. I have 18 meds a day 12mg Pred as cannot ever come off steroids totally, prob many that you are on too (I have heart/B.P issues as well again Classic CS) Dymista 3 way nasal spray keeps my rhinitis (no polyps thankfully) under control mostly, but my Eosinophilic asthma goes haywire in Autumn.

Luckily found very switched on Rheumatologist locally that I see for review next Wed think Cyclophosphamide might be only option but as likely I have kidney involvement they have tried all less toxic (ha ha!) stuff first. I have bowel involvement and stomach pain now as I was undiagnosed for so long. Kidney and bowel involvement mean a much poorer prognosis so I am praying kidney Dr next week says minimal damage or 1st stage only. I will keep you posted, you have given me hope Derek, thank you!

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