Has anyone tried the medication leflunomide?

Hello. I read a bit about the side effects of Leflunomide and was afraid to try it. I forget the exact ones that had me anxious, but I know that it takes a long time to get fully into your system, and then if you don't tolerate it well, it takes a long time to get out of your system. Unlike prednisone, which is pretty much completely gone one day after your last pill.

So I asked if I could try to manage my symptoms through diet and exercise, and while I still have symptoms, they did get a lot more manageable until last summer, when I got Covid, and then things seemed to get worse again. I went on another round (month) of prednisone, and now am taking Meloxicam, an anti-inflammatory.

I tolerated the steroids well, but my rheumatologist doesn't seem to want me taking them any longer than a month at a time. So I'm still trying to find the right balance, and the Meloxicam is helping for now, but I'd like to get off of it and manage just with diet and exercise alone.

I'm looking for the best diet for PMR, to reduce inflammation and be overall healthier. There is so much conflicting information out there!

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/

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.

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.

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.

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.

Leflunamide made me so nauseous I had to stop using it. I lost 15lbs in 3 months because just the smell of cooking made eating intolerable.

Hi @johnbishop, I got very sick 2 years ago, unable to get out of bed because of weakness and severe pain. My CRP and Sed Rate levels were through the roof. Tests for the usual suspects, RA, Lupus, Lyme etc were all negative. Over the past 2 years I've taken prednisone/Methotrexate, prednisone/Leflunomide, and prednisone/Humira. I got down to 4mgs prednisone with the Humira and then had a "flare up" 2 months ago. I'm now on 5mgs prednisone/40mg Humira, but am quite unwell still. I really don't want to increase the prednisone again so I'm hanging on until my next Rheumatology appt in February.

My diagnosis is PMR. My father was diagnosed 10 years and used prednisone throughout, but just recently got down to 1mg. My symptoms have been much more intense than his ever were. I never knew PMR often ran in families. It has ruined my life.

I still contemplate seeing Dr. Jemsek in DC. A girlfriend had similar symptoms and was treated by Dr. Jemsek in DC. He thought she had a very long term case of Lyme and treated her until she went into complete remission. She never once tested positive for Lyme and has been well for 12 years. If you know anyone else who sought help from him, please let me know if it was successful.