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Has anyone tried the medication leflunomide?

Polymyalgia Rheumatica (PMR) | Last Active: May 16 3:48pm | Replies (46)
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@njtodctode

Hi all. I have been on a roller coaster of pred doses because at first I was clueless and my rheumy didn't tell me the nuts and bolts of PMR ...let your symptoms be your dose guide...she hates pred and gave me a schedule which sent me in a tailspin. After learning a lot...thank you everyone here..it took awhile but I ended up on a dose that gave me a decent response but the.push to reduce has caused a lot of PMR heartache do I keep having to go up. SO...my rheumy wants me on leflunomide (years ago tried methatrexate but I didn't tolerate it well got 2 infections in first week). My concern is I am worried about the side effects. She is worried about the pred.
If she had done a slower lower step down I could be on a much lower dose by.now...so yes I am angry. She wants.me on this new med so she can lower the pred. It does give me strength to say ok but we are going slower for sure. So I am wondering if anyone has gone this route and what your experience was...did it help;.did you have side effects? Increased infections? Anything you want to share. I really hate the pred...I am experiencing all the usual side effects. But my PMR pain and fatigue has been the worst I have experienced of any of my collection of autoimmune conditions.
So thank you for reading this. Please take care of yourselves as we all battle to be pain free and functioning. Be well.

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Replies to "Hi all. I have been on a roller coaster of pred doses because at first I..."
John, Volunteer Mentor | @johnbishop | Nov 17, 2022

Hello @njtodctode, You will notice that we moved your post into an existing discussion on the same topic here so that you can read the experiences others have shared. If you click the link below it will take you to the beginning of the discussion where you can read the posts of @dermnurse68, @lorinfc, @jmcc and others:

--- Has anyone tried the medication leflunomide?: https://connect.mayoclinic.org/discussion/medication-1/

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deniseinca | @deniseinca | Nov 18, 2022

Yes i went on this medication to try to wean the prednisone also! It was great initially no obvious side effects. Overtime i felt my feet and hands were starting to feel different, i ignored it for a considerable time however i was developing peripheral neuropathy. as a healthcare professional I associated PN with pain as the first symptom so did not consider that. I eventually told my doctor when i could no longer feel the bathwater temperature until my ankles were covered, I went for EMG and the rheumatologist immediately ceased the medication. The drug worked very well for my PMR and was very well tolerated i would just caution to watch for sensory changes in the hands and feet as if caught early enough it is reversable. Unfortunately, i let it go too long and now have PN in both my hands and feet.

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Linda Moross | @lmoross | Nov 18, 2022

I understand the frustration you are feeling with PMR. I have experienced it myself. Prednisone brings relief and its horrible side effects!!
I tried methotrexate and threw up every day. Next was Leflunomide. It did not help the PMR and after 3-4 months I developed a horrible rash on my arms and torso. The itching was unbearable and it lasted six weeks. I am now on an Actemra infusion once a month. The third month the PMR pain was gone! I am still experiencing fatigue but blame that on possible long Covid. After four years I feel the most normal, not perfect, but I will take it!
Best wishes to you to find relief.

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