Struggling to taper

[Specialised]

Hi All,

(A quick recap) I was diagnosed with PMR in Feb 2024. Initially GCA was considered due to an incomplete response to 15mg pred and I was put on 50mg. I had no clinical symptoms of GCA and had a negative TA ultrasound.

I have been slowly tapering since then with a few ups and downs. For the last few months I have been reducing by 1 mg every 2 weeks and made it to 10 mg. I have experienced a return of symptoms at this point. To be honest however I started feeling minor niggles when I fell below 15mg. 😟

My rheumatologist is really keen to wean me off the pred and I am also currently taking 10mg/week of methotrexate reduced from 20mg due to my concern about hair loss.

I know from this wonderful forum that PMR is unpredictable and runs its own race (marathon!!)

I am feeling quite down at the moment about my inability to successfully taper. It is hard not to feel like a failure. I have increased my pred to 13mg to try and get it under control. I am due to see my doctor again in about 6 weeks. She has mentioned trying Leflunomide. Another powerful drug!!😫

I feel like crying to be honest. Sorry to be a wuss, but I know people on this forum will understand how I feel.

Specialised.

[DorsetLady PMRGCAuk volunteer]

Are the niggles/pain same as initial issues?

Many don’t get an immediate response on 15mg so why weren’t you increased by 5mg or even 10mg rather than to 50mg? Wondering wasn’t it considered that you might have a particular type of PMR that required just a bit more rather than assume it was GCA.

If you were okay until you got to “PMR type”doses ie. below 20mg, then I’d be plumping for that being the issue all along. Rheumy needs a rethink in my view.

In the light of our usual advice re flaring, I’d been inclined to take 15mg for a week or so, and rather than dropping back down as we usually suggest, try reducing by 1mg on a monthly basis.

If the 15mg helps, then you can discuss with Rheumy reducing 1mg per month for a while [to 10mg] and leave the Leflunomide for now…

[Specialised in reply to DorsetLady]

Thanks for your advice. I will give that a go. The pains are across the shoulders and upper arms and a general feeling of being unwell.

[piglette]

It does sound like your rheumatologist has not had much experience with PMR. It does amaze me the number of doctors who give us steroids and then want us to stop taking them when we find they are really helpful! If you ever start having niggles, the best thing to do is stop reducing until you feel OK. Slowly but surely.

[Specialised in reply to piglette]

Thank you Piglette. My rheumatologist is focused on reducing the prednisone for sure. I know it’s not great but is the mainstay of treatment.

[PMRpro Ambassador]

Jumping from 15mg to 50mg with an otherwise unfounded suspicion of GCA is a piece of nonsense if you ask me. If you don't respond to 25mg - that's a different matter.

And to be panicking after 9 months is another piece of nonsense. You obviously needed more than 15mg at the time, you could have needed 25mg and if you had been, being where you are after 9 months is not unusual. I agree with DL - and I also agree your rheumy needs a rethink AND some reeducation. Like piglette, I can only ask why diagnose something for which the only option for management is pred and then rush the patient off it by crackers tapering?

[Specialised in reply to PMRpro]

I agree, apart from the physical side effects of taking pred you have to mental worry of being on a drug that they don’t want you to be on for a condition that they don’t have many treatment options.