Flare on immunosuppressant : When u flare but are... - LUPUS UK

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Flare on immunosuppressant

poodlegal profile image
4 Replies

When u flare but are on immunosuppressants does that mean they are not wrking ??

My dr just said something like that but only just thought of it when I left hospital

Been in remission for 5 years why have they stopped working ??

Many thanks

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poodlegal profile image
poodlegal
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PMRpro profile image
PMRpro

As I understand autoimmune disorders, the underlying cause can cycle in intensity, it does in some at least. That means that it can be chugging along at a given level and then have a burst of activity - which may be enough to let symptoms appear despite you being on an immunosuppressant that was enough to keep the immune system quiet before. Or the disorder chugs along at the same intensity - and the drug suppressing the immune system stops working for some reason. You develop a flare that increasing the dose doesn't manage again.

It's a common occurrence in rheumatoid arthritis that a patient responds well to a drug for some time and then it stops working so well. Not all immunosuppressants used in RA work for everyone - so in some cases there must be differences in the "nature" of the RA they have. The immune system may change too - "learning" to make antibodies that upset how the drugs usually work. And of course, the disease may be progressing, getting worse, changing in some way.

I have an image in my head - but I can't work out how to express it in words. Maybe this helps.

everydayhealth.com/hs/rheum...

Freckle1000 profile image
Freckle1000

I've found with my SLE that in all honesty - there is no rhyme or reason. The lupus just decides to become more active. I spent years in remission - only to flare - followed by more years in remission.

With me when I flare the usual approach has been to up the dose of medications I'm already on and perhaps receive a few additional ones. It depends how bad the flare is as to how high the doses are. But the full on mega high doses are temporary until the flare settles down.

In some cases it just means you need to take a new type of immuno - suppressant drug. Perhaps a better newer one ? Plenty of them out there to choose from that might work better.

Essentially once the flare is over, they just reduce and subtract some drugs - back to normal. Back into remission - no worries.

Fennella02 profile image
Fennella02

I've been wondering the same. I've been flaring since May but there's no hope of increasing the Mycophenolate so where do I go from here? Azathioprin has never been considered, MTX was tried and failed and I can't see me getting the heavy duty treatments. I intend to ask at my next appt next month but I don't expect much to come from it.

poodlegal profile image
poodlegal in reply to Fennella02

Thank u all xx

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