Has anyone tried the medication leflunomide?

Posted by dermnurse68 @dermnurse68, Oct 13, 2021

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

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@lmoross

I was on Leflunomide for PMR.
It was fine at first. Then about six months in I developed a horrible rash on my torso and arms. The itching was unbearable. Stopped Leflunomide but still took six weeks to go away. It left some mild scaring.

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Leflunomide has an extremely long half-life so it is understandable that the rash persisted for 6 weeks. I think the half-life of leflunomide is several weeks as compared to a few hours for many medications.

The elimination half-life of prednisone is three to four hours, during which time your body reduces plasma levels of the drug by half.

I have mixed feelings about leflunomide. I was doing well on luflunomide for about a year in terms of decreasing my prednisone dose. During the year I developed 3 infections which required antibiotics. My rheumatologist stopped leflunomide due to infections even though it was probably working for PMR.

My rheumatologist didn't say leflunomide was what caused the infections. She said prednisone shared some of the blame because the combination of prednisone and leflunomide was suppressing my immune system too much.

The problem with prednisone is not about its half life. Prednisone suppresses adrenal function which prevents it from being stopped quickly when side effects occur.

The ideal medication for PMR/GCA would have a short half-life and doesn't suppress adrenal function. Also a medication that doesn't have too many side effects is important. I'm not sure a perfect medication exists.

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@tsharkey01

I am currently on LF. My rheumatologist started me on this 3 months ago as I taper off prednisone. I am down to 2.5 mg as of last Saturday. I have never been able to get this low in my prednisone dosage before.
I have some aches and pains but nothing excruciating like I have experienced with PMR before. I am truly hopeful that this will allow me to transition off prednisone. I have not experienced any weight loss. That would be a major plus since I have gained 40# over the last twenty months.
I see my doctor next month and by then should be completely off prednisone so I will find out if he wants me to continue with the LF.

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Hi, I am wondering what taper schedule you used with your prednisone once the LF started working for you.
I am now 3 months on LF and feel the best I have in 2 years. Now at 5 mg pred, I'm being careful to not create any increased inflammation and set my self back. But I do feel very good and so hopeful. Thanks so much for your information. J

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@jane2023

Hi, I am wondering what taper schedule you used with your prednisone once the LF started working for you.
I am now 3 months on LF and feel the best I have in 2 years. Now at 5 mg pred, I'm being careful to not create any increased inflammation and set my self back. But I do feel very good and so hopeful. Thanks so much for your information. J

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Hi, I started taking LF a month ago with very good results, i.e., reduced shoulder and hip pain during the night by 40-50% and hand morning stiffness the same. I have been dealing with PMR/RA for over six years. Methotrexate did not help me, along with a few other standard RA medicines. Switched to Prednisone 20mg and tapered off 2-3 times down to 5 mg. Below 7-8 mg symptoms started to get more severe again. My Rheumatologist really wanted me off prednisone so I stopped completely over a year ago and pursued a better nutrition and mostly plant based diet. This approach did help to a degree and I continue it with LF , 20 mg per day. Thanks for this forum and best wishes to you all.

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@tjpa444

Hi, I started taking LF a month ago with very good results, i.e., reduced shoulder and hip pain during the night by 40-50% and hand morning stiffness the same. I have been dealing with PMR/RA for over six years. Methotrexate did not help me, along with a few other standard RA medicines. Switched to Prednisone 20mg and tapered off 2-3 times down to 5 mg. Below 7-8 mg symptoms started to get more severe again. My Rheumatologist really wanted me off prednisone so I stopped completely over a year ago and pursued a better nutrition and mostly plant based diet. This approach did help to a degree and I continue it with LF , 20 mg per day. Thanks for this forum and best wishes to you all.

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Thanks for sharing your story. Your experience will be helpful guiding me on my journey.

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