Anyone having a lot of problems while taking leflunomide?

I passed on taking Leflunomide after reading it can take 2 years to leave your body. To me that meant if you have problems on it, , it could take an awfully long time to feel better. Had you previously tried other drugs? I’m on prednisone and methotrexate results. Tried to taper off prednisone and had to go back on it. Will do a much slower taper this time. Definitely a no fun at all roller coaster.

Thank you so much for replying! I was also worried about the two-year not leaving your body!!! The only other drug that I’ve been on was prednisone all different dosages. The problem with prednisone was osteoporosis got really bad even though I was taking Fosamax. unfortunately I think the only way to go with this is trial and error trying all different stuff and hoping for the best!!! my very best wishes to you!!!

I passed on taking this drug for the same reason—-it stays in your system for a long time, or they can give you another drug to speed up the process!
I finally gave in and tried to take it . Had horrible stomach cramps and diarrhea for the whole week I took it and that was enough for me to say no thank you to that drug!!

I discovered that there is a genetic test you can take to determine if you have the genes for Leflunomide to work as an immunosuppressive. However my Rheumatologist was very annoyed when I suggested that I would like to be tested before starting on it. She actually said to me " what difference would it make" (if it wasn't going to help with suppressing the immune system) "We only have a few options and Leflunomide was one of them". This was after trying Methotrexate and having a bad reaction. So she begrudgingly prescribed Hydroxychloroquine (Plaquinil) "because it is well tolerated in many patients but doesn't work". It has worked for me without side effects (so far). I started on a low dose and have increased slightly, haven't had to deal with the extreme infection risks of the stronger immunosuppressive drugs and it's definitely controlling the PMR inflammation (CPR results are confirming this) . There is a gene that strongly influences how you are able to metabolise some medications but Doctors generally refuse to acknowledge or test for it.

I know there is a gene present in some people (HLA-B27) that might make someone more susceptible to autoimmune diseases. I was tested and was found positive for this when I was diagnosed with reactive arthritis over 50 years ago.
But I have never heard of a genetic test to check for the efficacy of an immunosuppressant drug… where can I read this info?

Here is some information Mayo Clinic has on the topic:
-- Pharmacogenomics in Patient Care: https://www.mayo.edu/research/centers-programs/center-individualized-medicine/patient-care/pharmacogenomics

Thanks John—-you learn something new everyday!!
Found the Mayo article you linked to very interesting. Especially as these tests might effect the patients safety in taking certain drugs.
I would like to be a mentor like you, but now I’m thinking I have a lot more to learn !🙂

There has been a lot of research on Differential DNA Methylation pathways in recent years and the effect on metabolism of DMARD's like Methotrexate and Leflunomide to determine which patients are better suited to these drugs. Some studies state that around 40% of patients do not have a good response to them and suffer a range of undesirable side effects, liver damage and infection risks being the more serious adverse effects. The most recent study I read was from China in 2023, indicating that blood tests for particular DNA methylation signatures that determine response to Leflunomide and Methotrexate are still being actively researched. I noticed that the Lab test for Leflunomide response that was available 6 months ago is no longer available. I think it is still a dynamic and rapidly changing area of medicine but definitely worth keeping an eye on. I've just been doing basic Google searches but if you had access to Medline or some other medical research database, you will find a lot more info.