Neck pain/gca

[ipsydipsy]

I have had gca for over 2years with decreasing pred now on 5mg. I am now experiencing pain on the right side, near collar bone in the front of my neck. Anyone else experienced this.?

[PMRpro Ambassador]

I get something - ranging from discomfort to almost pain, if you see what I mean - that comes and goes just above the collarbone on the right side that I have put down to being associated with how I sleep on my right side and curled up in the foetal position since, although it is there much of the day, it is worst in the morning. It last reappeared as I tried to go down from 4 to 3mg a month or so ago. Discussion with my (rheumatology trained) GP resulted in a decision to go back to 5mg where I feel really well and stay there for several months (it was the third attempt to reduce at that level). It has faded since then.

[Celtic PMRGCAuk volunteer]

ipsydipsy (love the name!), are you sure you haven't done anything to strain your neck? Our muscles can be weakened by the steroids and can rebel quite easily if asked to do too much. I experienced bad neck pain mainly in the early days with PMR and GCA and found an electric heated pad helped. At its worst, I resorted to a surgical collar. As PMRpro has said, the problem can also arise due to the way you sleep. On a pain management course we were shown how to bunch the pillow, sort of pulling it forward under the crook of our neck in support, if you see what I mean!

[Anna135]

Yes, I used to have a feeling of discomfort there but on the left side. I also had soreness that would come on and off up and down the left side of my neck (and sometimes my left ear a bit as well). It has always been my left temple that I've experienced symptoms in as well. As my symptoms have been brought under control, I no longer get the neck pain (or temple pain) unless I'm having a temporary flare. I have a feeling that for me my carotid artery is involved as well, which would explain why I get that pain when my symptoms are flaring.

[judam9]

yes , most definitely. i could hardly turn my head or bring it up or down. my neurologist sent me too a therapist, and have been doing my neck exercises for years , everyday . it takes little time, and now i can move my head in any direction without any pain. it is definitely worth it . good luck. i takes only a short time to do them.

[Bramwater]

I haven't had neck pain but I had tingling on the right side in my neck down into my collarbone. This eventually went away about a month and a half after starting on prednisone. My Rheumatologist did not know what it was but I suspected it was part of GCA & I think it eventually disappeared as the disease came under control.