Vasculitis UK
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Azathioprine (imuran)

Hi everyone, my fiance was diagnosed with Anca vasulitis in 2014. He started Azathioprine Aug 2015 and is currently still on it and so far doing well..thank God. My question for those of you who are on Azathioprine- how long have you been on it. : is there a limit to how long one can be on this drug? Is Azathioprine known to stop working after a certain amount of years? thank you so much for your reply.

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Hi Christina Ive been on aziathioprine for 4 years now & my consultant reckons I'll be on it for another 4 years at least. It keeps my disease Churg Strauss under control. I'm glad you fiancé is doing well. I'm lucky as I don't have any side effects from it that I know about.

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My consultant reckons I will be on Azathioprine permanently. The only side effects are regular very slight headache - not disabling and not needing any treatment - plus if I catch something (e.g. a cold) it takes longer than previously to clear.

The vasculitis has flared up once so far - in two years - and a spell on prednisolone (again with no side effects) quietened it down again.

Compared with others I read about on this website I consider myself very fortunate.

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How much Azathioprine (dose) are U taking ???

Thnx

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I'm currently on 150mg.

Seeing consultant again mid-March, which will be 10 months after dose was increased to 150mg to deal with a flare.

She says she MIGHT reduce it then - will depend on blood test results and no further flare. At this moment that looks a bit unlikely, as I've just flown 22 hours to Sydney and it's very hot here. Vasculitic spots are beginning to appear. This has happened before, although the flare then resolved itself without increase in medication once I returned to European type temperatures. We shall see.

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I was diagnosed with Wengeners Vasculitis in 2013 & currently am on 200mgs of Azathioprine & Prednisolone together with other barrier immuno drugs which has kept my Vasculitis in remission other than a couple of flares.

Whilst the drugs may be altered from time to time I too was under the impression from my Consultant that I would be on them permanently.

I'm fortunate to have good knowledgeable Consultants who call for regular blood tests to keep on top of what is largely an unseen condition albeit which affects many of our vital organs.

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Hi. Great to hear about the drugstore suiting you.

My husband recently diagnosed with Wegeners. We are feeling terrible.

Can you please give me an idea about your condition if you don’t mind. How long you have been living with this disease and what’s your prognosis.

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I'll start with the prognosis in that it's a condition that cannot currently be cured but at least kept in remission - I found it helpful to be positive, in the knowledge that there are others far worse off than me, and managed to avoid regular dialysis despite chronic kidney damage.

I was first diagnosed in 2013 but have been fortunate to have been under knowledgable Consultants who regularly monitor my condition - Yes it can get you down with constant blood tests, hospital visits etc, but positivity is the key.

Since my initial reply to your post I suffered a couple of flares culminating in my Consultant ditching the Aziathiaprine in favour of 3 Rituximab infusions as this had fairly recently been licensed by NICE for the treatment of Vasculitis within the UK NHS - Whilst expensive at nearly £4.5k for the 3 infusions it has worked wonders for me and also served to reduce my drug intake being down to 10mgs of Prednisolone which I believe is likely to be my base amount for a while but ultimately I think they are looking to reduce this to 5mg daily.

I not sure of your circumstances but luckily I'm retired and the condition would have been difficult to manage if working as I find that on occasions I feel very tired and unable to do what I used too so I just rest up especially as I also have an Alpha one Antitrypsin disorder lessening my immune system still further.

Hope this helps

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Hey first of all thankyou so much to share.

My husband is 39. We are taking care of two kids. Don’t know how will we manage our lives now as it’s a complete lifestyle change.

We have been in contact with a rheumatologist. So after his first infusion of rituximab he’s on azarthoprine 150mg alongwitb predsinone.

Hope things go better for all of us.

God bless you.

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hi Christina I was on azathioprine for about 3 years I didn't have any problems caused by it but was changed to mycophenolate as consultant said it would be easier to lower steroid on this without as many side effects. when I tried to before my bloods showed problems and I had to raise steroid dosage again. at the moment I am down to 2mg daily and all showing ok so hoping to lower to nothing if possible. I've got a lot of problems with the steroid i.e weight skin etc and find i'm unable to do much so hoping this will help. I've got churg strauss

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Hi Christina, I took 75mg of Aza for about 30 years initially for vasculitis and then for a kidney transplant. I recently stopped in favour of other newer transplant drugs. The vasculitis hasn't returned. I think it's wise to get regular dermatology checks. Good luck.

RJ

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Thank you Rod-j. What kind of vasculitis were you diagnosed with? My fiancé also has kidney disease caused from the vasculitis. Curious, what "newer" drug are you taking? I'd like to look into it. I'm glad you're doing well. Best of luck to you.

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Hi Christina, I had Microsopic Polyangiitis (MPA) when I was 16. Back in the early 80s it was less well known so took a long time to get diagnosed. Thus my kidneys eventually failed 7 years later. I now take Tacrolimus as an imuno suppressive to prevent transplant organ rejection. But I also take Hydroxychloroquine (also used to prevent malaria) which my hospital (Hammersmith) believes is useful to prevent certain types of vasculitis returning. They gave me this when I came of the Aza.

Hope this is helpful.

Rod

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Hi I have been on Azathioprine for 18 years except when on Cyclophosphamide because of a flare of Wegners GPA and touch wood it is keeping every thing on track. All the best to you and your fiancé

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I have been on this medication since 2005 for crohn's. I tried all the other medication only to have a reaction. I also take Asacol HD 800mg 2x/day. I recently began align, a probiotic. I do feel better and know the difference on and off these meds. I also got the As aol hd, brand added to my formulary. Azathioprine can be a nasty Med with side affects, reactions. It took my go doctor 2 years to regulate me.

I wish you well.

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Hi,

I've been on azathioprine for wegners now since I was 18/19 right after cyclophosphamide im now 48 years old, been told I'll be on it for the rest of my days. Causes serious nausea and constant infections which seem to always hit harder than should be expected, but I'm a mother of 2 the youngest being 7 year old and I'm alive so I'm grateful for it.

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I also take omeprazole, 2x/day. I take the doctor prescription not otc. Zofran is an anti nausea drug, comes generic; and an anti spasm drug 2x/day. I have no pain.

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Hi, I've been taking this drug for a number of years. I take it for Crohn's disease. It helps me but I need to get my blood taken every couple of months as it can damage your liver. I get a full blood count & a liver function test. So far it hasn't caused any side effects. Hope this helps.

Sam.

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Hi I've been taking this tablet for quite a number of years & I find it ok. I take it for Crohn's disease but I have to get my blood taken every 3 months as it can damage your liver.

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