Should I See A Rheumatologist?

[noslak]

I was diagnosed by my primary doctor with PMR 9/8/21. I was in a lot of pain & he put on 40mg prednisone, which after joining this group I realized was on the high side. By 11/17/21 he had me down to 15mg. I have been up & down from that due to flares. Currently I'm at 17.5 mg & will work down from there. My primary doctor is OK with allowing me to adjust as I see fit but every time I see him he mentions that I might want to see a rheumatologist & that there might be different medications that a rheumatologist might want to prescribe. My doctor is a few blocks from where I live. A rheumatologist would be about an hour away. Do you think it would be worth it to see a rheumatologist?

[PMRpro Ambassador]

Hmm - in the UK probably 75% of patients with PMR are managed by PCPs. Whether that is good or bad depends on what they are like I suppose! It s claimed they aren't very good at getting the diagnosis right - either way: said to be PMR but it isn't and even more often they miss a PMR diagnosis. If it really is PMR, you respond well to a moderate dose of pred and then are able to reduce steadily, no, you probably don't really need a rheumy,

OTOH - you are struggling - though how are you trying to reduce from 15mg after 4 months? And I'm doubtful how much he really knows about PMR because the options for other drugs are limited and not guaranteed to work.

Tell us more about your tapering.

[noslak in reply to PMRpro]

I am in a rural town with a lot of older people. My doctor says he has quite a few patients with PMR. I think that he keeps mentioning a rheumatologist so that he can put it in his notes that he offered me that option. I think that in the beginning I tried to taper too quickly, rookie mistake. I was down to 15mg before Christmas which was a very busy time for me & then I got a bad cold & had a flare. I went up to 20 for the holidays & now I'm at 17.5 again. I will take it more slowly now.

[PMRpro Ambassador in reply to noslak]

Excellent - Bcol has said everything I'd have said so I won't say it again! You need at least 3 weeks at each new dose - and once you get to 15mg, 2.5mg at a time really is pushing it.

[Bcol]

Hi, if you have PMR then I'm not sure what other medication the doc thinks a Rheumy could give you. I would suspect that you have a number of flares because you have been trying to reduce your Pred too quickly -maybe on doctors orders. Once you've had flares it becomes more difficult to get under control. If 17.5mg is working for you, and, you have adapted your lifestyle accordingly then I would be tempted to stay with your primary doctor providing he/she is happy to allow to taper down in a slow and sensible fashion. Stay at 17.5mg until you feel happy and then think/start tapering. Plans and other info. available in FAQ's. In the end slower is quicker, less Pred taken and far fewer glitches on the way. There is no quick fix.

[noslak]

My doctor is easy to work with. He prescribes different strengths of prednisone & I have a good pill splitter. I just wanted to make sure that there wasn't something new on the market for treating PMR. I will take it slower & easier now that the holidays are over.

[Pass7 in reply to noslak]

my rheumatologist put me on Methotrexate & Folic acid in addition to the Prednisone.

[PMRpro Ambassador in reply to noslak]

Nothing that is guaranteed to work for everyone. If you struggle to reduce the dose then MAYBE methotrexate is worth trying because unless you try it you can't know if it will work for you. It does work well for a small group of PMR patients but by no means everyone and it very rarely gets patients off pred altogether - and it can have unpleasant adverse effects.

In the USA you may be able to get funding for tocilizumab/Actemra but it seems to depend on your insurance although I believe Genentech has a programme to fund some applicants whose insurance won't cover it.

[DorsetLady PMRGCAuk volunteer]

As mentioned by Bcol, couple of tapering plans -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...