Are these signs of PMR or GCA?

[Orchid47]

Hello,

My PMR started 2 years ago with terrible pain in the mayor big muscles of the legs and arms. 7 months later I had GCA. Since then I had 2 more flare ups.

Now I have aches and pain on the top of my head and the back of my head. My right shoulder blade Scalpula is tender and sore especially at night. My shoulder and back of the neck are stiff. I have days without any pain and others were my head is dizzy and I can't concentrate as my head is so bad. Has anybody anybody else had similar complaintsin the past?

I have been down to 6mg Predisone and over the past 2 months twive increase d Predisone by 1mg, so that I am now at 8mg.

At 7mg Pred. I have done blood tests. Complement-C4 and Ferritit were too high above normal. CRP 1.00mg and ESR 35.

Thank you for your reply.

[DorsetLady PMRGCAuk volunteer]

Hi Forrervici,

Your pains could be related to the GCA, but just as likely to be a side effect of your shoulder. If it were GCA I would expect you to have the pains all the time, not just some days. Think you need to get that checked first before you automatically assume it's GCA. Could be rotator cuff problems or arthritis, frozen shoulder - many things really.

I have arthritis in left shoulder and find that sleeping on a specifically shaped pillow has reduced my neck and head pain I used to get - and confuse with return of GCA. Available on line, but check what problem is first as they can be quite expensive.

Your raised ESR reading could be related to that as well, not GCA, as the Pred should be keeping it lower than 35, and as we all know it can be raised by many different reasons.

Suggest you stay at 8mg until you get an answer on your shoulder, no point in trying to reduce when you have other issues going on. Do hope you soon get an answer, I know how difficult it can be.

[Orchid47 in reply to DorsetLady]

Thank you Dorset Lady.

I shall ask my Rheuma Dr Lady. Hopefully I shall see here on 28th November after waiting for 3 months to get a appointment with her.

[PMRpro Ambassador]

I think you need to see your rheumy and tell them about these symptoms.

You say the scapular pain is at night - does it improve during the day? Do you have other pain and when? Have you tried taking an NSAID pain killer (not regularly, it isn't a good idea with pred) and does it help with any of the pain?

[Orchid47 in reply to PMRpro]

I tried Kinesiology Tapes on my shoulder and Scalpula, but this made it worse. I went swimming in sea water and the cold water helped a bit. I is at night when I am lying on my back that it hurts the most. During the day it comes and goes.

I don't want to increase the Predisone before I shall see the specialist.She wants to put me on Arava and the side effect scare me terribly.

I tried also Radian Cream.Menthol and Camphor.

Tjank you for your advice.

[PMRpro Ambassador in reply to Orchid47]

If you say the pain is worst at night-time that really isn't typical of PMR but it is typical of another arthritis that can present very like PMR.

Strangely, a lady on the forum who it is thought has had PMR and GCA told us today she has now been diagnosed with this other arthritis as a the result of mentioning her pain is worst at night. So since you are seeing a rheumatologist soon - don't forget to mention that the pain is worst at night when lying on your back. It may not be that, there are other things that could be involved - but what you describe really isn't usual in just PMR.

[Orchid47 in reply to PMRpro]

When I had PMR 2years ago I was in pain 24 hours non stop, also with GCA. I shall mention it to my Rheumy.

I read today what this lady wrote from the forum.

Thanks PRM pro