reduction in methotrexate: I have Churg... - Vasculitis UK

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reduction in methotrexate

sarahdollygirl profile image
6 Replies

I have Churg Strauss Syndrome (EPGA) for which I have been taking methotrexate for nearly 5 years. After running some tests my consultant is suggesting that the dose (25mg weekly) can be reduced. Anyone had experience of this and how is it done?? Like steroids, ie, gradually??

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sarahdollygirl
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Davenpos profile image
Davenpos

Can i ask your symptoms prior to being diagnosed x

in reply toDavenpos

Have you read this Davenpos?

vasculitis.org.uk/about-vas...

Hi,

I know that usually you need to be in drug induced remission for at least 2 yrs before they start to think about reducing immunosupressants. It makes sense to try and reduce the dose first rather than going cold turkey, I know that EGPA can be tricky to treat. When I was on MTX for the first time I came straight off it as it wasn't working so don't have personal experience of your experience.

karens62 profile image
karens62

Hi - I have egpa and my rheum recently told me that I could start to taper off the Cellcept after 11 years with no flares. It made me wonder if there has been some new research on immune suppression and remission. I am slowly tapering off cellcept now. I was taking 14 pills a week, 1 in the am, 1 pm. My first tapering period is 6 weeks with a reduction of 3 pills [M, W, Th night]. Then I get a blood test. If all the markers are the same as last time, then I can do another taper. The rheum doesn't know if I'll come off it entirely or even if this taper will work. But all is well at this point. So the short answer is, going off Methotrexate will probably be a slow taper. However, like many others point out, this kind of question needs to be fully discussed with your consultant. You should get detailed instructions. Good luck! Please let me know how it goes. So far I've never heard of anyone who has tapered entirely off the immune suppressant. But I have hope that we'll at least be able to reduce the amount of drugs we're taking!

sarahdollygirl profile image
sarahdollygirl in reply tokarens62

hear hear!

bumble05 profile image
bumble05

Mycrophenolate and anthrprizolene did not suit me as I experienced numerous infection whilst using these drugs. Perhaps my white cells were reduced too much

I therefore refused mycrophenolate and am now trying to reduce predesilone with the help of various inhalers. I have had churn Strauss for 3 years. And take a losartan potassium drug as my heart was also affected. I am able to work which stops me from being depressed.

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