Where do I go from here?

[oldtimer2]

I've many years history of Rheumatoid Arthritis and Polymyalgia (PMR). I developed vasculitis in August, possibly triggered by apixaban.That had been started after an episode of dramatically low sodium had caused Atrial Fibrillation.

I'm now on 25mg prednisolone, azathioprine 125mg daily. This is stops the bright red rash and swollen legs, but I still have microscopic albuminuria and lowered kidney function, also now on lisinopril 2.5mg for this. The PMR symtpoms are casuing problems (can't dress myself) and I've restarted the adalumimab injections which have only made a small difference. The fatigue is a massive problem.

The present medication feels like a holding procedure rather than a resolution. I've read everything I can find...

Would a larger dose of azathioprine help to suppress the immune response better? Usually on this dose of prednisolone I'm feeling manic and 'overwell'. Not now, I still feel terrible.

Any suggestions?

[PMRpro]

Adalumimab is unlikely to help the PMR problem, it works on the wrong cytokine. Have they ever suggested trying an IL-6 inhibitor such as tocilizumab for the RA as it may work for the RA and will almost certainly work for the PMR. Aza isn't really very useful in PMR, methotrexate or leflunomide are the DMARDs more commonly used in PMR - they may or may not work, you have to try to find out but when they do work, the effect can be very good.

There is a dedicated PMRGCA forum on HU,

healthunlocked.com/pmrgcauk

[oldtimer2 in reply to PMRpro]

Thanks, I'll talk to the rheumatologist on Thursday.

[piglette]

Were you able to dress yourself before being getting symptoms of PMR? If so the steroids should improve your movement so you should be able dress yourself unless you are on too low a dose.

[oldtimer2]

I had no problems dressing myself before, but this dose of steroid hasn't improved things. Time for a rethink.

[michichgo]

Hello oldtimer2. You've really had a rough time and I hope you get some relief soon. What type of Vasculitis do you have?

I recommend you reach out to the Vasculitis UK helpline as they can speak more to your healthcare options in the UK. (I'm located in the States.)

The lowered kidney function is what caught my eye, as that was how my MPA Vasculitis was diagnosed. I recommend you request seeing a nephrologist, as Vasculitis can cause permanent kidney damage. I'm not entirely familiar with all of the medications you're taking but they sound relatively mild for bringing some (certainly not all) forms of the disease under control. Perhaps you were on a stronger medication upon receiving your August diagnosis.

I wish you improved health, and quickly.

Michele

[EGPAGuy]

I was put on azathioprine after trying and struggling with mycophenolate. As far as the vasculitis goes the trick is to try and find a steroid sparing solution so you can get off or reduce pred asap. The dosage of azathioprine I was given was 150 daily. Made me sick and I was unable to reduce pred below 15/day. Maybe the Mycophenolate could work for you? Other options could be Methotrexate or rituximab so you can start to taper off pred. There is also a new drug which is a pred alternative to ask about..Avacopan. Hope this helps and good luck with your journey. Best Lev