PMR or is it?

[Bleakley1]

Hello,

I am new to this forum but have had PMR for five years now. Have been doing quite well on 7mg of prednisolone for a while now. Five years ago I was so bad my doctor put me on 30mg as. I could hardly walk or move arms. After being referred to a rheumatologist my condition was confirmed as PMR. A lot of ups and downs along the way but have been as back to normal as possible on the 7mg. However in the last week or so my left shoulder ,top of left arm and side of neck have been quite stiff. Have tried resting it ,rotating it but no still stiff and alarmingly now keep getting a painful niggle down my front left side of breast (clavicle level). Has any one else experienced this? I would be grateful for any insight.

Thank you,

Regards,

Barbara

[SheffieldJane]

Hi Barbara, I have also been treated for PMR for 5 + years. I didn’t feel right at all last year and my very thorough Rheumatologist did a lot of tests such as a full body MRI, a head MRI, a chest X Ray, a scan of the Aorta ( looking for signs of Large Vessel Vasculitis which can effect the Aortic Artery). It was noted that my blood pressure differed by 10 points in each arm. I finally had a specialist Arterial ultrasound scan and Giant Cell Arteritis/ Large Vessel Vasculitis was spotted in the artery in my left armpit - a halo effect on the artery appeared on the screen. I was put on 40 mgs of Prednisalone, a little while later my Rheumatologist applied for and got Actemra/Tocilizumab for me. This enabled me to reduce Prednisalone quickly to 10 mgs while the Tocilizumab dealt with the inflammation. I am currently Tapering from 8 mgs of Pred ( I may absorb even less because it is gastric coated). I am telling you my story in case something similar is happening to you. I got stuck at 7 mgs Pred for a year and when I finally got to 3 mgs all the above happened. Good doctors continue to look, 20% of PMR patients go on to develop GCA not necessarily with the head, jaw and eye symptoms. Rather affecting the peripheral arteries and sometimes the Aortic Artery. Your new chest pain needs to be investigated. It may be a muscular strain and it may not. I hope this is not too muddled. Just back from the dentist and full of Novocain.

[Bleakley1 in reply to SheffieldJane]

Wow! That is quite a bit to take in. You have been through the mill. Thank you so much for your reply. I have upped my pred to 10mg. Will try this for a few days. If this does not work I will book an appointment with my GP. Unfortunately don’t see my rheumatologist until next year. I think it’s the not knowing that is upsetting isn’t it.

Regards Barbara

[PMRpro Ambassador]

I'd look up sternocleidomastoid syndrome - it could cause all those signs. It does for me.

medicalnewstoday.com/articl...

[Bleakley1 in reply to PMRpro]

Yes I have looked this up as you suggested. It’s possible but not sure. Neck is not too bad it’s the shoulder arm and niggly pain that is annoying.

Thank you for your reply

Regards Barbara

[Seekingasolution in reply to PMRpro]

Well that was fascinating! I’ve learnt something from reading that. Thank you. I think I’ll sign up for the emails too.

[arvine]

this also sounds like my story, I have been on pred for 5 yrs now, started at 40mgs, but last appointment mos ago, rheumy said my joints, muscles etc was not PMR??? but arthritis, I have been very confused and lost confidence in her, to say the least, so I am trying to taper now to 4 mgs, while having other issues going on, ie bowel problems, still have stiff , sore muscles , ham strings, glutes, shoulders,, (although after having ultrasound on shoulders, shows calcification, and small tear in left shoulder tendon), and she has now given me a requisition for cortisol serum blood work, along with the usual inflammation markers, ??

[Bleakley1]

Oh dear! Like you I sometimes wonder what to believe. With PMR in the shoulders how on earth can doctors then say oh but it’s arthritis. I think doctors should experience the pain of PMR and it’s associated muscle spasms etc.

[Seekingasolution]

I think your suggestion to contact your GP is the right one - especially if you are in the least worried. I’m sure s/he could escalate your appointment to the rheumy if it was felt necessary and you wouldn’t want to hang about if it was say GCA. Or Maybe online via LIVI could be faster. Meanwhile I’ve been having a little trouble moving my head left and right so I learned something from the replies on here.

[Bleakley1]

Yes. Experience of others and sites recommended are helpful.