Has anyone tried the medication leflunomide?

Posted by dermnurse68 @dermnurse68, Oct 13 1:25pm

Has anyone tried the medication leflunomide?
I have PMR, since prednisone has not helped me after 4 years I am finally off of it! My rheumatologist suggested this medication. The side effects are unbelievable and we are not sure if this will work!
Also, she suggested sulfasalazine.
Any comments?
Thank you

@dermnurse68, you may wish to see this past discussion where @lisabeans asks about leflunomide (Arava). @10071923 @lorinfc @gma12346 @kozlo52 @cyndyabq may also have experiences to share with you.

Have you started taking leflunomide yet?

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Hello @dermnurse68, This is an older research paper from 2012 but hopefully it will provide some helpful information for you.

Efficacy and tolerability of leflunomide in difficult-to-treat polymyalgia rheumatica and giant cell arteritis: a case series: https://pubmed.ncbi.nlm.nih.gov/22897467/

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@colleenyoung

@dermnurse68, you may wish to see this past discussion where @lisabeans asks about leflunomide (Arava). @10071923 @lorinfc @gma12346 @kozlo52 @cyndyabq may also have experiences to share with you.

Have you started taking leflunomide yet?

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Not yet
I am very afraid to start due to the horrible side effects
My CRP is 25 and I am still taking methotrexate!

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@dermnurse68

Not yet
I am very afraid to start due to the horrible side effects
My CRP is 25 and I am still taking methotrexate!

Jump to this post

Thank you
How would I be able to see the earlier discussions?

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@johnbishop

Hello @dermnurse68, This is an older research paper from 2012 but hopefully it will provide some helpful information for you.

Efficacy and tolerability of leflunomide in difficult-to-treat polymyalgia rheumatica and giant cell arteritis: a case series: https://pubmed.ncbi.nlm.nih.gov/22897467/

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Thank you John

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@dermnurse68

Thank you
How would I be able to see the earlier discussions?

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Here's the older discussion @colleenyoung was referencing — Undiagnosed auto immune disease, put on Leflunomide: https://connect.mayoclinic.org/discussion/undiagnosed-auto-immune-disease/

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@dermnurse68

Thank you
How would I be able to see the earlier discussions?

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oops, I forgot to add the link to the earlier discussion. Thanks @johnbishop for adding it.

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In reply to @dermnurse68 "Thank you John" + (show)
@dermnurse68

Thank you John

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Thank you again John

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@colleenyoung

@dermnurse68, you may wish to see this past discussion where @lisabeans asks about leflunomide (Arava). @10071923 @lorinfc @gma12346 @kozlo52 @cyndyabq may also have experiences to share with you.

Have you started taking leflunomide yet?

Jump to this post

Hello. I was reading about the side effects of Leflunomide and it spooked me too. I know it takes a while to work its way into your system, and also takes a long time to work its way out – so if you have a bad reaction it could be a while before you get any relief.

I asked my doctor what she thought about me trying to control my inflammation with a change in diet. She was all for it., so I am trying to avoid dairy, sugar, and gluten from my diet, and adding more whole foods, gluten free foods, fresh fruit and veggies, grains such as bulgar and quinoa, etc. I limit my alcohol intake to one or two drinks a week.

I've been off the prednisone for almost 2 weeks, and my pain and discomfort on some days are horrible and other days not too bad. Advil helps, but I take as little as possible (one to two tablets a day when I take it). I know it will take a while to really start feeling the effects of a change in diet, and hopefully I won't get discouraged and revert back to my old eating habits (which weren't horrible, but weren't as healthy as they should have been).

So now I'm looking for any recommendations for an anti-inflammatory diet!!

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@lorinfc

Hello. I was reading about the side effects of Leflunomide and it spooked me too. I know it takes a while to work its way into your system, and also takes a long time to work its way out – so if you have a bad reaction it could be a while before you get any relief.

I asked my doctor what she thought about me trying to control my inflammation with a change in diet. She was all for it., so I am trying to avoid dairy, sugar, and gluten from my diet, and adding more whole foods, gluten free foods, fresh fruit and veggies, grains such as bulgar and quinoa, etc. I limit my alcohol intake to one or two drinks a week.

I've been off the prednisone for almost 2 weeks, and my pain and discomfort on some days are horrible and other days not too bad. Advil helps, but I take as little as possible (one to two tablets a day when I take it). I know it will take a while to really start feeling the effects of a change in diet, and hopefully I won't get discouraged and revert back to my old eating habits (which weren't horrible, but weren't as healthy as they should have been).

So now I'm looking for any recommendations for an anti-inflammatory diet!!

Jump to this post

Hi @lorinfc, You might want to look through the LCHF Living & Intermittent Fasting Group discussions for some suggestions to see what others are doing for better health – https://connect.mayoclinic.org/group/lchf-living-intermittent-fasting/

What got me off to a good start for eating healthier and more anti-inflammatory foods was reading about Dr Terry Wahls and how she was able to treat the progressive symptoms of her MS through nutrition – https://terrywahls.com/about/about-terry-wahls/

Here's a good start also – Polymyalgia Rheumatica Diet: Do's and Don'ts – Healthline: https://www.healthline.com/health/polymyalgia-rheumatica-diet

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I went on Leflunomide (because my insurance turned down Humira) and got off it when my hair started falling out! My doctor was trying to get me off prednisone … it makes me feel junky at doses above 5mg.

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Perhaps it was the prednisone that was responsible for your hair loss it certainly did that to me!

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