choosing an alternative to Actemra: hello everyone... - PMRGCAuk

PMRGCAuk

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choosing an alternative to Actemra

Japsquar profile image
9 Replies

hello everyone! And thank you for your usual wise and knowledgeable input which helped me to decide to stop taking Actemra after about 6 months following two episodes of diverticulitis in as many months.

Now I need some more help! Fortunately my Rheumy finds my decision understandable. I’d have had to wait six weeks to discuss it with her so I went ahead without, having discovered the well-documented link between Actemra and diverticulitis. She is now offering me three choices of alternative drugs - Mycophenolate, Azathioprine and Leflunomide. Reading the leaflets, they look very similar. How to decide and how to uncover the lesser known/advertised side effects?

To give a bit of context, I’m feeling really shaky about all this as I’m waiting for an X-ray as it’s thought I have a fractured vertebra. Also just recovering fro an accident that severely bruised my shins (could hardly walk) and which caused a wound which isn’t healing. I realise I must get that seen hopefully tomorrow. Spine X-ray isn’t for another week (I’ve been waiting two) and I’m having to sleep on my back - and can’t sleep! Which is why I’m so wobbly. On 17.5 pred.

so the question is how to decide between those three drugs??

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9 Replies
Koalajane profile image
Koalajane

I know little about these drugs but I think it would be worth getting some of these other problems out of the way so you have a clear mind to make a decision.

Good luck with everything

Japsquar profile image
Japsquar in reply to Koalajane

Thanks, yes you’re right. There’s only so much I can deal with at a time!

winfong profile image
winfong

I'm on leflunomide after - like you - a bout with diverticulitis with Actemra. Haven't heard of the other two

PMRpro profile image
PMRproAmbassador

Neither mycophenolate or azathioprine are used much in PMR, there are no real studies on their use so they tend no to be used much. Leflunomide does have a record of success in a small study but there hasn't yet been a proper clinical trial completed using it. There are some people on the forum who are on it, If you were to retitle your post or write another taking out actemra and using the other drug names you would probably get links to related posts discussing it.

This post is the experiences of one lady who has tried 2 of the three and also methotrexate which is more usually used.

healthunlocked.com/pmrgcauk...

Japsquar profile image
Japsquar in reply to PMRpro

Thank you, helpful

Japsquar profile image
Japsquar in reply to Japsquar

In fact, very helpful!

piglette profile image
piglette

Probably the best would be to try one and see if it works well for you. I think personally I would start with Leflunomide, in general it seems to have had reasonably good feedback on this board.

Japsquar profile image
Japsquar in reply to piglette

Thank you, looks like this may be the way tongo

piglette profile image
piglette in reply to Japsquar

Good luck

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