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Has anyone tried the medication leflunomide?
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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cje: Your situation sounds dire. I haven't tried any of the biologics and frankly, the side effects scare me. Pred is bad enough. Talk to your rheumy about trying a month of Low Dose Nalproxen with your pred. It might help you get a handle on things, with hardly any side effects. Plus now you can try MSM (over the counter, considered safe).. It's a good anti-inflamatory. Do your own research, of course. Best of luck and let us know how you are doing.
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1 ReactionI agree that PMR can ruin your life. I now have Covid and wonder if I will be a long hauler. Didn't take the antiviral prescribed as the info on it was disturbing. Praying I
do not have kidney damage, etc. I wish I could offer advice, but I am on prednisone at 3mgs. Hope I do not have a terrible flair. Methotrexate did not work for me.
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1 ReactionI was going to ask about Leflunomide as well. I am currently on methotrexate injection and hydroxychloroquine . My rheumatologist wants mevto drop the hydroxychloroquine and add Leflunomide with my methotrexate injection. I am not feeling comfortable after reading about the side effects.
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.
I have been on Prednisone for 18 months for PMR, always trouble to decrease when below 7mg. Even with slow taper. Tried sulfasalazine last summer for 6 weeks but couldn't tolerate that accompanying lethargy, with no real decrease in pain.
I got down to 4mg of prednisone (from 20 mg one year before) in Dec 2023, but experienced the worst flareup to date. I increased back to 7mg (my most recent relief dose) and was started on leflunomide. I was concerned about the side effects also, but they have been minimal and now resolved, after 4 weeks. 2 weeks at 10mg and now taking 20mg (as per my rheumatologist) and I suddenly feel better than I have in 22 months. I'm hesitant to reduce my prednisone but I feel more confident and the most comfortable that I have yet to try again. I will taper slowly tho. I am fortunate as my rheumatologist is wonderful.
She was reluctant to try methotrexate, as I have, since all this started, had 3 skin SCC lesions excised.
I follow this link but am posting for the first time as I have not seen any other references to leflunomide, I hope this is helpful. We are all individual, but this has been a game changer for me.
Take care.
Thanks for your input. I was on Prednisone and Methotrexate and was able to finally get off Prednisone. What symptoms did you have? I have lost 25 pounds in a matter of a few weeks. I have finally stabilized at 115 pounds, which is worrisome if I lose anymore. Which weight loss is one of the symptoms. Also, I am prone to bronchitis and pneumonia which are also mentioned in the symptoms. Blood pressure is another symptom that goes against me. I actually feel real well with what I am on now. I go see my Rheumatologist tomorrow and will be asking why she is persistent for me to take the Leflunomide.
I found your commment about Methotrexate and skin cancers interesting. It is a recognized adverse side effect of taking Mtx. I have only taken 4 doses of the wretched stuff, do not have a lot of sun exposure but live in Queensland Australia (sub tropical) and have noticed skin lesions popping up all over the place on my very fair skin.
As I am at 20 months of taking prednisone, and only 4 and a half weeks in on the leflunomide, I can't really say if I will experience more side effects at this point. I have overcome afternoon nausea and AM headaches that occured at about week one but subsides by week 3. I did not feel any change until about week 3 and a half of the leflunomide. But the decrease in my pain and swelling has been profound this past week. I anticipate further improvement as leflunomide is a long term medication that takes 4-6 weeks to become effective with 3 months showing the full potential. (As per my rheumatologist) at this point I am remaining hopeful.
If you feel well at this time I would certainly discuss this with your rheumatologist. I have not tried methotrexate, but I understand it is the preferred drug of choice and has good outcomes also. I was limited as to my options.
I will be interested as to the reasoning for the switch, yes, given the reported adverse reactions to LF. I have lost weight also, but try to make good food choices, increased protein and I stay active.
All the best to you.
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.
Your story is so interesting and sounds very similar to mine, generally speaking. Yes I am feeling so hopeful for tapering again, as that seems to be the concern of all Doctors regarding prednisone, although it works so well for me.
At this 4.5 week point of LF I am feeling the best I have in nearly 2 years. I have always been a very healthy active person and have experienced many physical and emotional ups and downs with changing (roller coaster) prednisone doses.
Your post of LF at 3 months gives me great hope in the direction I'm heading. Even at this point I am doing things that I have been unable to do, or do without suffering the consequences, since before this whole thing started. Thanks so much, I wish well to everyone through this journey. Again understanding that we are all different in our responses to treatment, may the right one be found.