British Lung Foundation
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Move from Methotrexate and Azathioprine onto Cyclophosphamide for Churg Strauss (E.G.P.A)

Well I came back from my rheumatologist appointment and after almost a year on Methotrexate and last 8 weeks with Azathioprine added in on top with no remission or benefit at all looks very likely I am now being moved on to Cyclophosphamide by IV infusion in hospital fortnightly, rheumatologist confirmed what my research found if Churg inflammation in my kidneys my prognosis plummets to under 46% - said he can get me to my 50th birthday this December but no comment on beyond. I was told by my rheumatologist to insist on a kidney biopsy at my renal appointment this week but renal registrar I saw said has to take to team meeting next week to speak to senior consultant as biopsy is risky procedure (more likely translates to costly....) Lots of soothing noises made by renal Dr despite having blood/protein in urine for last 8 months (ignored by tertiary care Drs in London!) until he realised I really knew my stuff and was my best advocate on this disease!! Wondering how ill cyclophosphamide will make me, think hair will fall out and sickness, has anyone been on this drug long term as at least 6-12 months treatment to gain remission in E.G.P.A?

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Hi Megan, I hope somebody here will have some advice or knowledge that they can share with you. I don't know anything about those meds but they sound like a pretty scary concoction. I'd just like to wish you well. Good Luck !

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Hi Billiejean_2 yes these meds are all toxic as hell (some derived from pure mustard gas!) They have horrible side effects even years later such as bladder and skin cancer but with Churg it is incurable and life threatening so not much choice really, must give it a bash and if as consultant said it doesn't work or too toxic I will then be taken off slowly with palliative care.

Your kind wishes mean so much xx

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Hello Megan

Yes was on six months of Cyclophosphamide, hair didn't fall out, took the snit sickness meds, wasn't sick. The worst thing was the fatigue, made me very tired for several days then slowly back to normal after that.

I was very scared of it, unnecessarily.

Good luck

Cc xxx

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Thank you so much Ccupcakes, that is very reassuring to hear, were you on it for Churg or RA? The methotrexate and Azathioprine make me exhausted 2-3 days later...bit like I have been flattened by a steam roller a few times ha ha :)

I know in States it is gold standard treatment for CS when all else has failed and to save your life so I have to give it a go!

Many thanks again, have a lovely day xx

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Hello meganoscar123 and sorry not to be able to give you any first hand advice about these new meds you are going to take. However @cup cake has replied and she's certainly put a positive reaction to these medicines,so I hope that is of some comfort to you. This site is so excellent for seeking out first hand experience of all things and im looking forward to learning how things are with you in the next few weeks etc.

Wishing you all the very best. cupcake67

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Thanks SquirrelsHolt for your support I am hoping it will be the miracle I need to achieve some form of remission!

Have a lovely day x

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Sorry cupcake67 I didn't mean to use your name and was unable to delete it. Apologies.

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No worries SquirrelsHolt, I have that problem to sometimes, vagaries of modern tech eh?

meganoscar123, I'm sorry , it was late last night when I replied to you and it was a bit abrupt!

I have UCTD and Obliterative Bronchiolitis with some mild Bronchiectasis, Crohns and Colitis and OA.

Although I've never had Methotrexate , I was taking Azathioprine for quite a while for the Crohns, for me it was brilliant , made a huge difference to my life, very positive. That said it was stopped when the UCTD and lung condition kicked off and replaced with very very high dose prednisalone, and the Cyclo. I was glad to finish the infusions, mine were every four weeks, and I did get progressively more fatigued each time, the twenty four hours after the infusion was the worst, followed by a period of almost hyperactivity, everything felt sort of speeded up and I babbled a bit, much to the amusement of my other half though I slept. Thankfully that didn't last long. I was very thirsty as well and had some bladder discomfort but nothing serious or majorly painful.

Then the fatigue kicked back in and over the next week or so I got back to normal.

I have Fibromyalgia so being fatigued is a normal state for me, therefore you need to take the tiredness in context, unless your RA causes you fatigue it may be different for you.

We are all very different my friend, so what affected me and how i reacted will probably be different for you.

On the whole, the Cyclo. was very positive, I'm back to the Royal Brompton next week and will find out then if it was successful in slowing the very rapid and aggressive progression of my lung disease, it is , as you say, the Gold Standard, so I am hopeful for us both.

Wishing you the very best, do let us know how you get on , PM me if you wish. Sorry this was such a long post!

C.c xx

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High Ccupcakes, thanks for your info, so glad Cytoxan worked for you. Unfortunately Churg Strauss is a very difficult incurable disease to treat most are diagnosed too late like me, my original asthma Dr at Brompton was the blithering idiot that refused point blank to consider I could have CS..."Too rare...blah blah lets get you off Pred all together..." left me over 12 months and refused to refer me to rheumatologist until I paid privately to see UK's top specialist and 45 mins later he diagnosed Churg Strauss and put on chemo to save my life. CS was named after 2 pathologists...all their patients were dead that tells you seriousness of this auto immune disease and yet Drs still ignore possibility at their peril and more importantly at our detriment !

I was also told I had fibromyalgia but as my very efficient pain consultant (one of 8 consultants trying to keep disease from my brain, heart, spinal cord etc) that is nonsense, it is pain from inflammation of CS attacking all my joints/muscles. I have just begun fortnightly lidocaine infusions in hospital.

I only take one day at a time, still work as much as I can but my life is very different now and so limited, exhaustion is terrible. I still get up and enjoy what I can do each day and the support of everyone here is so helpful. Let me know how your appointment goes I pray your lung disease is halted. Thinking of you xx

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Ive just been put on home oxygen had all the treatments you mention for what they now think may be vasculitis and pulmonary fibrosis(its destroyed my lungs) the only success i had was with Rituximab infusion (few side effects) ive now been kinda sidelined by my respiratory cons and been referred back to rheumatology to see if they can calm down inflammed blood vessels im so confused with it all i just go along with what thwy tell me! Hope this helpsx

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Weemag, I am so sorry to hear your experience, if you read my post to Ccupcakes you will see I was misdiagnosed with Churg Strauss a rare and dangerous vasculitis a year ago. I have done tons of research in the formal papers of US Doctors treating this with gold standard therapy and Rituximab is a good new drug, but the reality is you must be diagnosed and caught early so seeing a rheumatologist that understands CS is vital. I now have a very good one here on South coast who is very thorough. Kidney involvement is not good news and really reduces prognosis so hoping if mine are affected it is through the Methorexate for last year and not inflammation....we shall see.

My advice is to be your best advocate, read and research everything, the Churg Strauss Association in America has brilliant website worth a look and as a dear friend told me "Be that squeaky wheel" never accept without questioning what these Drs tell you, you are the expert on your condition, they won't like being challenged but tough it's your life!

Best of luck and my thoughts are with you xx

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