Any suggestions for starting Leflunomide

[Linny3]

Hi Everyone

I will be starting Leflunomide on Monday and wondered if anyone would have any suggestions on how to make this experience more pleasant than it sounds.

The side effects terrify me. However prednisone was recently increased once again to 15 mg and is not helping like it once did for pmr which I have had for 3&1/2 years. I wonder if my body is getting use to it and is requiring more to stay ahead of the pain and stiffness? The side effects of the prednisone are really bad for me and are about to drive me crazy. Therefore I agreed to try and add leflunomid to the mix.

Any responses would be appreciated.

[moorfield]

Hello....our journey may not have been exactly the same (however I am also quite intolerant to pred , but persevered as no alternatives) have also just been offered Leflunomide and have said I will think about it as like you reading the side effects is....scary....

So sorry I can't help at the moment.

Can anyone comment??

Thankyou

[MrsNails]

Hi Libby

I’m not sure who else maybe taking it on our Group but if you put ‘Leflunomide’ in the search box, info will come up from some of the other Rheumatic Groups which you may find helpful.

Kind Regards

MrsN

[Linny3]

Thank you for the replies

[43tripandskip]

I was put onto Leflunomide and was really pleased at how I no longer had the familiar flares. It really helped to get me off pred, but I am not entirely free of the effects of PMR. I am waiting for a rheumy appointment next month to find where I go from here. Everyone experiences the effects of Leflunomide differently. I didn't have any serious side effects apart from suddenly developing an abscess in my throat. It was dealt with at my local hospital and I didn't have to be admitted. over night. The drugs given to me for the infection gave me a bad response - similar to a painful flare. My rheumy said that the intravenous drugs would have brought about that response. I was fortunate to have a rheumy to guide me, otherwise I would have been extremely worried. I just hope you also get helpful guidance.

[Lochy]

I started leflunomide Feb 2019 after three years of PMR. I hasn’t made much progress below 10mg and was having real issues with one swollen painful knee. No one keen to keep increasing steroids so tried this. My blood markers always run high and I have regularly elevated liver markers so leflunomide was chosen before methotrexate.

I tolerated leflunomide no problem with no side effects but not sure it made a blind bit of difference! Continued sore knee and elevated inflammatory markers.

Stopped taking it mid April this year. Probably prompted by current covid crisis and belief it wasn’t doing anything. As someone said they couldn’t stop my prednisolone. I also take hydroxychloroquine.

Currently on 7.5mg pred with elevated bloods again and strange aches in wrists/arms. Believe I’m falling into the sero negative RA category. They’re considering trying me on etnaracept one of the biologics.

Good luck in your decision. I did panic reading the side effects but I had none of them.

[Maryis80]

Have been on Leflunomide for over a year now with no visible side effects, except sometimes a runny tummy. The main problem is no alcohol! But the consultant and local phramacist said 4 units a week would be ok. Bit difficult to stick to during lockdown!

[Jackoh]

Please see my reply to moorfield ( just posted) I think reading the side effects of any drug can be very daunting and from what I can see everyone’s experiences can be very different.