Muscle ache. PMR?

[tomh]

Hi all. I was a fit 76 yo, dignosed with GCA some 10 years ago. I posted a few months back that I was hospitalised with CV19 end of last year for 15 weeks. Complicated with Pneumonia , Bronchitis, Thrombosis, Tracheostomy, on life support for 4 weeks. Since release, 16/12/21, I have had Long Covid, breath shortness and fatigue. I have still been reducing Pred. very slowly, 0.5mg every 2 months. I am presently on 2.75mgpd. The last 3 weeks I have had ache in both my shoulders. Cannot sleep on LHS. and chronic fatigue. The last week. I have pain in my left forearm. I am seeing Immunologist next week, but do not have a great deal of faith in Dr. Any comments greatly appreciated.

[PMRpro Ambassador]

You have had a rough ride - are there any improvements prior to this?

You have been on pred a long time for GCA so I assume you have had problems reducing before - are these symptoms now similar to what has happened before? Were PMR symptoms part of your GCA originally?

You are not reducing relentlessly to zero - you are looking for the lowest effective dose. Maybe you are there? And given all your other problems - maybe your adrenal function is still compromised?

[tomh in reply to PMRpro]

Hi PMRpro, Thanx for replying, I posted some time ago, that I believe all of my previous increases were a mistake - by Drs. The decision to raise dose because of relapse was based solely on blood markers. VHS, CRP. At my age, many inflammatory conditions occur, not GCA related. For the past 3/4 years, I have basically self-diagnosed. I believe that if I am having a relapse, then I will get symptoms. I have not had any GCA related symptoms. I have not had PMR. On leaving hospital end of '21, I was fatigued and little energy. I got a little better, and was walking several hundred metres pd. The aches and pains I posted about are new, and I am concerned it is PMR. My adrenal function is compromised, and my 'kidney' dr wants me off pred as soon as possible. I also take 40mg daily of Azeiteprione, an immunosupressant. I have appointment with Immunologist tomorrow ( Tuesday)

[PMRpro Ambassador in reply to tomh]

One of the basic rules is that raised markers without symptoms should never result in a kneejerk raising of the dose - whereas symptoms without raised markers may require more pred quickly.

ESR and CRP rise in response to many things - including a cold. not just GCA/PMR. In that case you repeat the check to establish if there is a trend.

I appreciate the renal guy wants you off pred - however, it isn't his decision, no/poor adrenal function and no steroid is a life-threatening situation. It is perfectly possible all the symptoms are adrenal insufficiency related - but equally, it could be due to PMR as a symptoms of YOUR GCA.

[Grammy80]

I read Pro's response and she has said it all! What you have been through with covid would knock the starch out of anybody! Maybe give yourself a longer break and be comfortable. My best to you💕

[Nextoneplease]

Hi tomhGoodness, you’ve been through a lot! I think you are amazing to be on 2.75mg, and I agree with the others, I wouldn’t think there is any rush to reduce further. In fact, I wonder whether you were more comfortable at a slightly higher dose? If so, perhaps you might consider raising your dose slightly, to where you were last feeling better. Maybe 3.25?

Good luck with the doctor. Hope it goes well- do keep us posted.

All the best xx

[tomh in reply to Nextoneplease]

Thanx reply. Because of kidney 'problems', The drs and me are not keen on increasing pred dose. It's a rock and a hard place.