Not PMR but now diagnosed with Polymyositis?

[musclesinflamed]

After being diagnosed for 5 months with PMR and being on (& tapering) Prednisone, with further blood tests, my Rheumy has concluded that it isn't PMR at all. He says that the Pred will help with the pain but the test indicate that it's Polymyositis. He want's me to continue the slow taper of the Pred but to take 10 mg of Methotrexate once every week. I would love to hear from the Pro and DSL and any other input is more than welcome.

To cap it all off, I've now been diagnosed with steroid-induced diabetes! (What a love/hate relationship I have with Prednisone!)

[PMRpro Ambassador]

Presumably your CPK level is high? And presumably he has only treated you with PMR-level doses of pred? There is no tried and tested treatment but usually you would be put on a very high dose of pred - 1mg/kg/day, which could be 70mg or so for most of us - for a month or two.

Methotrexate and azathioprine are used bit so are other immunosuppressants if they don't work.

emedicine.medscape.com/arti...

I hope he finds something that works for you

[musclesinflamed in reply to PMRpro]

Thank you for your reply. Yes, it was my CK level that was elevated that caused the Rheumy to declare a change of diagnosis. While my prednisone levels never went above 20mg, that definitely gave a lot of pain relief. I'm down to 10mg now and, for the most part, doing fine. He wants me to continue tapering as I am (10%/4 weeks) but I'm wondering if it's not PMR and that I'm on Methotrexate, might I be able to taper faster? He's not having any other tests for a few weeks and I think that's mostly to see if the Methotrexate is being absorbed.

I had thought that it was surely PMR, as did my PCP, due to the fact that Sed rate and CRP were elevated and 20mg of Pred worked to relieve the terrible pain. Now with the elevated CK and the drop in strength that I've experienced, maybe he's right??

I appreciate your sending me the link on eMedlicine but I can't get into it since I'm not a physician or med student. (too honest(?).

Again, thank you for your input!!

[PMRpro Ambassador in reply to musclesinflamed]

Nothing to do with honesty - it is purely for their reader figures, nothing else. I used it because it was the clearest about treatment but if you are bothered try this

webmd.com/a-to-z-guides/myo...

Methotrexate doesn't usually start to take must effect for some time so don't be in too much hurry to get off pred!

You aren't on a statin are you?

[musclesinflamed in reply to PMRpro]

No, I'm not on statins. Another question (understanding that Methotrexate will not be up to therapeutic levels for a few weeks):

Once the Methotrexate is up to levels, can I speed my tapering off the Prednisone? If so, what would be reasonable?

[PMRpro Ambassador in reply to musclesinflamed]

Depends. It doesn't work for everyone, and tapering in big steps rarely works anyway, You will taper at the rate your body will accept and no-one can forecast that. For some people it doesn't speed up the taper but ut smoothes it out and you are less likely to flare as you go to a lower dose.

[musclesinflamed in reply to PMRpro]

Thanks Pro, I guess we are all unique😀. I will continue on the 10% plan but maybe on a 3 week schedule. fingers crossed.

[PMRrunner]

I added firstly leflunomide(stopped due to side effects) and then methotrexate as I couldn't get below 9mg prednisolone. It has helped as I'm now on 4mg of pred. I tolerate 10mg of methotrexate weekly really well, not so 15mg where I have fatigue and some nausea. Also I think it took around 3 months for me to notice any positive effect. Hope you find something that works for you.

[musclesinflamed in reply to PMRrunner]

Thanks PMRrunner! (I'm just starting on 10mg also.) Were you able to taper off the Pred faster once the Methotrexate kicked in?

[HeronNS in reply to musclesinflamed]

You do need to be careful with pred taper below 5 mg, not least because other meds won't help with the adrenal function and that takes time to get back up to speed. Dosage of 5 and below has far fewer side effects and diet should help with high blood sugar.

[musclesinflamed in reply to PMRrunner]

Thanks PMRrunner, I do understand that IF, in fact, my adrenals are not making cortisol I need to go slowly to avoid a flare. But, at 10mg of Pred, the adrenals can't be tested and my Rheumy now thinks that I don't have PMR. Therefore I am left with the same question.

[PMRpro Ambassador in reply to musclesinflamed]

"if my adrenals are not making cortisol I need to go slowly to avoid a flare."

Adrenal function and PMR flare are not connected. They are two separate things that have to be balanced in the need for pred. If you haven't got PMR then you won't flare, but you still have to taper the dose of pred to allow the adrenal set-up time to recover, it isn't just whether the adrenal glands can produce cortisol, it is whether the hypothalamus and pituitary glands are doing their part reliably too. Methotrexate may allow you to drop the pred dose faster but it does nothing to supplement adrenal function other than maybe stopping a flare of whatever it was that caused the symptoms. If it is an inflammatory arthritis, MTX can take up to 6 months to work there. You might be able to drop from 10 to 7.5 or even 5mg quicker - unless you need pred to manage your symptoms until the MTX works optimally.

[PMRrunner]

I have tapered slowly especially since 5mg but before the methotrexate I was struggling to get below 9mg so it has helped. My rheumatologist wanted me to taper more quickly but I've resisted(mainly due to the advice given on here) and she now seems happy for me to do it at my own pace.