I have been on pred for 2 1/2 years. Tapered to 1mg per day. Now I have neck and back of my head pain that I cannot live with. It is awful as I cannot turn my head without expteme pain. I don't want to go up as I was beginning to gain weight quickly. at 3mgs per day. Is this neck and head pain due to PMR or something else. It has slowly gone up my body from hips to shoulders, and now the neck.
Thoughts?
I always say this because it happened to me when I was on 3 mgs for PMR. Have you been thoroughly checked for Giant Cell Arteritis ( GCA). When my symptoms began to get fierce at what I thought was end stage PMR, my Rheumatologist organised an Ultrasound head and shoulder test, GCA /LVV was found in my left armpit. The two diseases often go hand in hand. If that is all clear, I would increase my dose until I was comfortable again. Intolerable pain should not have to be borne.
Thank you so much! Great information.
It needs to be checked out to make sure it’s not GCA.. and any new head pain whatever it is should be investigated.
A little extra weight is nothing compared to extreme pain or sight loss.
So true! Thanks.
You have been to the GP haven't you?
It is concerning that you STARTED to gain weight at 3mg which is normally when everyone would be losing. And any new head pain should be investigated.
That the pain has spread up from the hips could suggest that the PMR is no longer being managed by the low doses - but if you don't go to a dose that manages your inflammation the symptoms will only worsen, You already are saying you can't live with the headache - gaining a bit of weight compared with pain or the risk of loss of vision is nothing,
Thanks for this advise, PMRpro. Yes, now I am at 1mg per day and the weight gain has stopped. I actually went to 1/2 mg a few days, probably a week. The pain is not totally controlled, but my SED rate is normal, so the rheumatologist did not get concerned about that. GCA scares me a lot. Neck and head is better some, but I am having a MRI this week to check it. You think I am being unwise not to go back up?
The pain is not totally controlled, but my SED rate is normal, so the rheumatologist did not get concerned about that.
Your rheumatologist should be concentrating on the pain, not just the SED rate. We as patients know that bloods can lag behind well behind symptoms - why don’t the medical people. Why we always say - symptoms are the key in deciding whether you need an increase in Pred.
Thank you!
Great advice. You ladies know this disease so well.
Careful with not being worried about not entirely controlled pain - the SED can lag months behind inflammation building up and suddenly you may find yourself back where you started and needing lots of pred to sort it. As DL says - we know this, some rheumies know this - why don't they all understand it can happen?
Sounds like a good idea to eliminate the possibility of GCA asap. And the remote possibility of a blood clot travelling through the body could be checked for at the same time.
But if it is skeletal an awkward movement may have put the spine out of alignment and the problem has ended up at the neck. Something like this happened to me a while ago. Very scary as I found it difficult to lower my head to the pillow to lie down - had to hold it up with my hand. A physio might be able to suggest an exercise that would stretch the whole spine to relieve the tug on the neck and help with realignment. Sorry if I'm way off course with this.
Thanks so much. As afib has occurred over a year ago, with maybe only a couple of short instances since, I am on Eliquis. Am considering the Watchman implant to get off it. Due to the PMR, I am wondering if there could be complications.
I like the idea of some PT to check the neck and head pain over the long haul. Thanks.
The studies I have seen suggest that you don't get off anticoagulation entirely with the Watchman - it requires antiplatelet medication, usually aspirin. I'm not sure I'd consider that significantly better than the DOAC you are on and the procedure itself involves risks as a surgical procedure which includes stroke during the procedure and cardiac tamponade.
I have noticed that. Maybe Plavix is suggested for a while and aspirin for sure. A lot to consider.
Neck and Back Head pains
New to PMR
PMR / Prednisone 
Pain in Neck
PMR PREDNISONE TAPERING PLATEAU
