Any experience with Leflunomide?

@emm0284 At least one member has heard of it - leflunomide is also known by the brand name Arava, and it has been around for nearly 30 years..
There is a good lost of DMARD and other anti-rheumatic medications here:
https://www.goodrx.com/health-topic/autoimmune/dmards-list
Let's talk a little about the "scary side effects" you and I both read about. Every drug has them. The patient brochures and other published literature is required to list them ALL, no matter how minor, how transient, or how rare. Whenever we are faced with choosing whether or not to take a medication or have a medical procedure, we need to do a risk-benefit analysis. Then, if we decide to proceed, we must be willing to follow the precautions for our particular medication, including periodic blood and other diagnostic tests, watchful for changes, and prompt about sharing concerns with the prescribing doctor.

The classes of drugs used to treat rheumatoid arthritis - DMARD's, JAK inhibitors, and biologics, all tend to have a longer list of side effects because they calm inflammation by suppressing the immune system.

Again, we must decide whether to accept the risks. In my case, it was easy because I can no longer use drugs like ibuprofen (NSAID's) and long term steroid use has even more risks than leflunomide, and my quality of life was declining due to pain and joint deterioration.

Here is a little of my story; I have had osteoarthritis from my 20's, and years ago my primary told me she believed I also had rheumatoid arthritis, but the rheumatologist refused to diagnose it because I did not have the markers in my blood. Fast forward 30 years and many failed attempts at diagnosis and treatment. Two years ago, a new rheumatologist told me at least 20% of people with a
RA are "sero-negative" - no blood markers. He diagnosed mine with imaging, symptom review, and a steroid challenge. (If you have signs and symptoms, and your pain is lessened or relieved by a course of steroids, it is RA.)

Due to other medical issues, my choice of DMARD's (disease-modifying anti-rheumatic drugs) is limited, so we settled on trying leflunomide (brand name Arava.)

I too was concerned about the long list of side effects, but according to the doctor, most patients tolerate it pretty well, and we started with the lowest possible dose. My symptoms have improved, use of my hands is improved, my pain is much lower. I had very mild side effects at first (diarrhea and annoying headache) both of which went away in a few weeks. My blood is checked every 3-4 months, my liver enzymes are stable. My white blood count is a little off, but has remained stable. This work is done in my usual clinic under a standing order, and the results are sent to the rheumatologist as well as my primary, so I have 2 doctors watching over me.

I hope this gives you a new way of looking at your choices.

I too take Leflunomide and was originally prescribed 10 mg five days a week then doubled it to 20 mg seven days a week. Initially, I did lose some hair, but that seems to have plateaued now various blood tests have been all over the place but there’s no way I can go back to not being on medications for RA. I was recently diagnosed with CVID and trying to determine if my current meds will suffice for this diagnosis along with monthly infusions.

It would be great to find a primary physician locally that understands the complexity of why diagnosis and can help me. I get frustrated at times.

@sueinmn This is tremendously helpful. Thank you!

@rheumatol3 Where are you located?