Questions and Advice Needed

[Lenore58]

I’ve had PMR for a year now. Like many, it hit me overnight, striking my neck, shoulders and hips to the point where I could barely function. My inflammatory markers were within normal range, which may explain why I had extreme stiffness, but little to no pain. 10mg. of Prednisone made me feel almost 100% back to normal overnight. I’ve run into trouble every time I’ve tried to taper due to physical or emotional stressors that trigger it again, I believe. One time I got as low as 2.5, I think, but had to go back up to 7.5 or 10. I’m currently at 6 mg, but not doing very well. I had a long (6-week), wonderful trip to France, where I thought the better food supply may improve my residual stiffness. It did not. Some time ago now, the stiffness and discomfort stopped being isolated in my neck, shoulders, and hips. I now have stiffness in my knees, lower back, left forearm, and I have a sore ribcage. When I breathe deeply my entire ribcage hurts a bit, front and back. And the ribs above my left breast sometimes get so sore I can’t turn or twist at all. Also, my upper spine is very sore to the touch, as if it is bruised; has been for a few months. (A dexa showed osteopenia and osteoporosis in my spine, none in my hip, but I heard that doesn’t cause pain?)

Does this all sound like PMR? Or might something else be going on? Do I need to go back up to 10 mg. for 2 weeks and re-assess? (My doctor will not be happy with that plan, but I’ve stockpiled enough 10 mg pred to be able to do it.)

Thank you for “being there.” You are all so kind, knowledgeable, and supportive.

[piglette]

Have you tried taking pain killers to see if they help?

[Lenore58 in reply to piglette]

Yes, I’ve been taking Tylenol at times, and that does help a bit.

[piglette in reply to Lenore58]

If Tylenol is working you might find that it is not PMR. You could try a stronger painkiller for a short time to see if it helps. The other test is to go up 5mg of steroids for a week and see if that helps. If the steroids help and the painkillers don’t particularly it is probably PMR. If the other way round it probably is not PMR but something else. Good Luck.

[Lenore58 in reply to piglette]

Thank you!

[alangg]

If you got down to 2.5mg in a year, then I would suggest that you have gone too quickly. It took me nearly 3 years to reduce to near zero and I think I was quite lucky.My regime was too reduce the dose by no more than 10% using a 4 week taper plan every time. Then wait 4 weeks to be sure that the inflammation isn't building up again before starting the next taper. If the symptoms increase, then go back up a bit or if they are manageable, stay on that dose until you feel able to reduce again.

And yes, I had soreness in my chest which a physio suggested could be due to those muscles doing work that the PMR affected muscles were not. It lasted a long time but eventually went along with the PMR.

[Lenore58 in reply to alangg]

Thank you!

[Wales20]

I wonder if you might have other conditions as well as PMR. Some of your pains eg in your back sound like they could be forms of osteoarthritis. Have you had an MRI on your back to check? Perhaps your rib pain is costochondritis. Have you discussed these wider symptoms with your doctor. Beware of just blaming everything on PMR and taking more pred, especially as you have osteoporosis (which does not cause pain but means you are more likely to break bones). Pred is bad for your bone health.

Good luck with trying to work this all out.

[Lenore58 in reply to Wales20]

Thank you!

[DorsetLady PMRGCAuk volunteer]

A combination of things probably….

Certainly too fast a taper [and 10mg is a low starting dose anyway, but guessing that was because doctor wasn’t 100% sure it was PMR].. and if you keep flaring then your illness doesn’t seem properly controlled.

So some pains - knees - could be PMR - and quite likely another flare following holiday…

Ribs etc do sound like costochondritis, that’s requires further investigation - but as painkillers don’t help it may be related to PMR.

You do need to discuss with doctor… asap…. No more self assessing.

[Lenore58 in reply to DorsetLady]

Doctors are so hard to get in my area. My long-time PCP retired, and I’ve been bounced around to different nurse practitioners as I wait for a new Primary care doc. I booked my appointment a month before I left the country, but they didn’t have a new patient slot till end of September. Meanwhile, I was successful booking with a rheumatologist that was brand new to my area. I have an appointment with her on the 28th. She wants me off prednisone, and has prescribed Cymbalta and Gabapentin, but I never started on them because I’m very skeptical they I’ll help and I don’t want to get dependent on more drugs along with the prednisone.

Regarding the flares, it’s been a particularly rough year: selling the family home due to divorce and having to move into a little apartment, a heartbreak, and Covid. Hoping life settles a bit going forward.

[DorsetLady PMRGCAuk volunteer in reply to Lenore58]

Unfortunately your circumstances re doctors seems to be almost world wide…and like you don’t see the point in adding in extra drugs when -at the correct dose-Pred is the go to one in relation to PMR.

Always dubious of Rheumies who want to reinvent the wheel when the one available is tried and tested and does what it says on the tin when administered correctly…

Although it’s difficult, I think you need a frank discussion with new rheumatologist.

..and sorry to hear you have had such a rough year -another thing some medics don’t take into account.

[Lenore58 in reply to DorsetLady]

Thank you for your understanding. I dislike when my doctor tries to push alternate drugs on me that are for ailments other than PMR. Prednisone worked like magic at only 10 mg, but then as I tried to taper under her constant urging, and while stressors increased, the symptoms flared again. I’ve been at 6 for awhile, and today I increased to 7 and feel a little better already. You are right, DorsetLady; I need to have a frank discussion with her about it. I know she is worried about osteoporosis, but I think mine is slight.

[PMRpro Ambassador in reply to Lenore58]

If it is badly managed PMR - which I suspect - Cymbalta and gabapentin will do nothing and what is worse, are hell to get off once started. They are for fibromyalgia, a totally different disorder, and the fact 10mg pred worked so well initially shows that, whatever it is, it is very unlikely to be fibro.

[Lenore58 in reply to PMRpro]

YES!! I always research drugs thoroughly before taking any, and that’s exactly what I was worried about! I’m already trying to wean down on Ava drug that works: I certainly don’t want to have to wean off others that don’t!

[PPower in reply to Lenore58]

Where in the US are you located?

[Lenore58 in reply to PPower]

I’m in California.

[SnazzyD]

If you have had PMR for a year and “at one time got as low as 2.5mg”, it means you were at 2.5mg in under a year. This is too fast for most people and a 10mg start dose is lower than recommended as a start dose. So likely too low, too fast and perhaps, as others have suggested something else as well. Costochondritis crops up here regularly but the spine issues might need a further look. It could be down to poor posture because of everything going on but checking there are no little fractures might be an idea in light of your spinal osteoporosis.

[Lenore58 in reply to SnazzyD]

Thank you for your input. I did have an x-ray of my spine and I have degeneration, but no fractures.

[PMRpro Ambassador]

I think you started all wrong - 10mg is a very low starting dose and is rarely enough to clear out the accumulated inflammation entirely. That then made tapering harder as you were just skimming along above the inflammation and a bit less pred had you dipping into the inflammation.

You aren't tapering aiming to get OFF pred, you are looking for the lowest effective dose. But having only been on 10mg to start with, you had started halfway down the ladder - there wasn't as far to go anyway. Figures in a study suggest that half of patients take 18 months to get to 5mg - half of us take longer. It took me 4 years to get below 10mg reliably and doses of 7 or 8mg are common as the "sticking point" in the first 2 or 3 years.

Is it actually the spine, the bones, that is sore? Or is it the muscles around the spine? Myofascial pain syndrome is a common problem alongside PMR and causes a lot of back pain because of spasmed muscles and trigger points in large muscles that cause referred pain by irritating nerves to other areas as well as muscle pain as alangg describes. For me they caused rib pain but costochondritis can also cause sharp rib pain.

[Lenore58]

That makes sense. My original PCP put me on 10 bc she was very skeptical that I was “old enough” to have PMR. I was 64, so not too young at all! Is there a place where you or others have written or linked to the damage inflammation can do to a body long term, and that prednisone is the lesser evil in terms of damage? Maybe I can take it to my rheumy and have her read it.

I’m pretty sure it’s the bones of my spine that are sore. Besides the dexa showing T-score of -2.9 in my AP Spine, an x-ray showed “multilevel degenerative changes at C5-C6 and C6-C7. Aging is a blast.