MRI results

[Anna135]

I've been having PMR symptoms since February, and finally just had x-rays and MRI (no contrast) done, to see if anything showed up - both came back clear. I understand that rules out osteoarthritis and rheumatoid arthritis, but would my clear MRI rule out PMR as well?

My rheumatologist didn't mention the possibility of PMR at all when she sent me for the scans, only arthritis. After getting the clear results, she told me that then rules out an inflammatory cause of my sore muscles in neck, shoulders and hips, and her new advice was to see a physio. I'm 100% sure it's not a mechanical issue, based on the symptoms matching PMR exactly including morning stiffness, and flaring up and down in the same manner as my GCA symptoms used to.

My bloods have been showing increased inflammation since the symptoms started in February, although not super high, but I am still on prednisone (currently 7mg), as I have not been able to get off following GCA treatment due to developing Secondary Adrenal Insufficiency .

Did anyone have an MRI (with no contrast) and it showed nothing, despite having PMR?

[PMRpro Ambassador]

"she told me that then rules out an inflammatory cause of my sore muscles in neck, shoulders and hips," and you have raised inflammatory markers?

What is she on about? You had GCA, you were on pred, the PMR symptoms developed as your dose reduced: the first thing she should consider is PMR as the cause of the symptoms.

If I understand this correctly

ard.bmj.com/content/74/12/2188

as far as I can gather MRI will identify a specific subset of PMR patients, Prof Mackie specifically mentions this supports the concept of a variety of versions of PMR. MRI has shown there is no actual inflammation of the muscles - but you obviously have inflammation somewhere and you have fairly typical PMR symptoms. That said - it COULD be myofascial pain syndrome, though that is closely allied to PMR in pathology, but physio won't deal with that unless you have a physio who is allowed to choose their approach and understands PMR.

Have you tried a bit more pred? At what dose did it appear?

[Anna135 in reply to PMRpro]

Thanks so much PMRpro. Sorry for my slow reply, I've been absolutely knocked out with fatigue the last few weeks.

So my understanding of the paper is that only some of the PMR participants had the MRI show something. Is that what you are saying as well? I think I will take this paper to my rheumatologist at my next appointment, and discuss my suspicion that it is PMR.

I haven't tried increased prednisone yet. How many days of an increased dose does it usually take to feel a reduction in PMR symptoms?

[PMRpro Ambassador in reply to Anna135]

Yes, exactly - you can still have PMR but nothing will be seen on MRI.

[123-go]

I agree with PMRpro. You have classic symptoms of PMR and elevated CRP would confirm that. The very fact that you have sore muscles in those three areas suggest there is inflammation. I'm guessing the pain is bilateral-on both sides of your body?? Physiotherapy applied by someone who isn't familiar with PMR could well do more harm than good.

You have some alternatives on how to proceed:

Ask for a second opinion;

Ask for increase in Pred dose to see if pain reduces: if it does it would confirm PMR;

Change your rheumatologist if possible.

It's clear you shouldn't be expected to tolerate pain/soreness without further investigation.

[Anna135 in reply to 123-go]

Thank you for your reply, 123-go, and sorry for my slow reply.

Yes, the pain is bilateral.

I agree with you that seeing a physio could cause more harm than good. My GP asked me last week about booking in physio as she got the letter from my rheumatologist, but I told her I don't think it's going to help and that I will just leave the physio option out for now.

Unfortunately I can't change rheumatologist unless I go to someone private and pay a few hundred dollars - I am thankfully seeing my current rheumatologist at a public hospital so don't have to pay anything for it.

So I think my first move will be to go in to my next appointment with her, armed with a few papers on PMR, and discuss with her that this is what I believe is causing my pain, and see how she responds.

[123-go in reply to Anna135]

No apologies needed Anna; pain and fatigue prohibits everything.

You are wise to be armed with all the knowledge you've gained when you see your rheumatologist. Stick to your guns and ask for a trial increase in Pred...12mg? (PMRpro?)

Physiotherapy may be considered much later. Once my inflammation was under control I saw a physiotherapist with the aim of regaining some strength and improved balance after many weeks of inactivity. She made notes of my answers to her questions and devised a plan of gentle exercises which I performed at every appointment to enable her to adjust as necessary. I literally went from strength to strength with no pain involved in the exercises. I tell you this to give you some hope for the future. I can still stand on one leg for 30 seconds 😃.

Good luck and best wishes for your next rheumy appointment.

[Anna135 in reply to 123-go]

Thanks so much. Yes, I think a trial of a higher dose could be an idea.

Well done on the standing on one leg! I actually was seeing a physio for the same reason last year. This was before the PMR symptoms started, and I was down to 3mg prednisone, doing well in slowly improving my adrenal insufficiency, and wanting some help with my deconditioned muscles and poor posture after being on high prednisone for GCA for so long and weakening the muscles that let you stand up comfortably.

Then I tumbled backwards again to zero adrenal functioning following a nasty virus in July 2019, and I've become fairly deconditioned again from the fatigue, so I'll definitely have to go back to my physio once I'm a bit more recovered. She was lovely.

[123-go in reply to Anna135]

It's really uplifting to be treated by a health professional who is understanding and encouraging and not pushy or dismissive. With fatigue, we really have to listen to our bodies-and our minds. Rest and not pushing through is the key although I understand that there are people who have demands on them and find that difficult to achieve.

All good wishes for your continuing journey.

[Alebeau]

I am going in to year 3 soon with PMR and still at 10 mg Prednisone. I am just now thinking I will be able to get to a lower dose this year and be relatively pain free, not counting my eggs yet. 5 mg would be amazing. Blood work done monthly, ESR is at 11 and CRP is at 1.

I take half Prednisone at 7 am an d the other half at 7 pm, that really helps control the pain all day.

Good luck

[Anna135 in reply to Alebeau]

Yes, I would love to get down to 5mg too. Actually, I'd love to get to 3mg - I got that low previously, and found it to be the point where I was able to start losing weight more easily, and moon face almost gone.

I hope you are able to reduce your dose.