PMR flare -Shoulder and neck pain..and headaches

My Opinion, you have reached the taper point. The kevzara has reduced the PMR inflamation but now that your getting lower on the prednisone your cortisol levels are not caught up. This increases the pain which increases inflammation. Its a vicious cycle created by the prednisone not the PMR. It will act like a flare but you will never get off prednisone by going back up. You need to taper more slowly or suffer through a couple weeks or even month to have your cortisol restart.

I've had one flare at 6mg with new pain in the upper back and neck on top of all the previous ache spots. There was ringing in the ears too, I'd forgotten about that till you mentioned it. I sat on the 6mg for too long (4 or 5wks) to see if it would resolve, which just made the inflammation get worse and meant the dose had to be raised higher than if I'd acted sooner. Don't leave it too long to act. For me, minor dose reduction aches usually resolve within 2wks, so now I won't be waiting longer than 3wks to return to the previous dose. All fixed again now with the rise in dose, currently tapered down again to 10mg.

Well that’s reassuring. Although I’m sorry you had the same issue. I keep getting stuck at 8 but I did go back up to 8.5 and that has helped. Also I missed my Kevzara dose last week because I had an emergency out of town and forgot about it. So I think the Kevzara is really helping. This pain in my neck was new to me so it was concerning. Thank you.

What I found helpful was my doctor's suggestion to try a heat bag on the new aches in the neck and upper back. After applying a microwave wheat heat bag to the pain a couple of times a day, the pain there was very much reduced. The usual pain spots took longer to come good, with the medication being the only thing that improved them. Everyone is different, but something as simple as a heat bag can help in some cases.

Hi @megz you mentioned pain in areas, head, neck and ears that could indicate your PMR has progressed to GCA. Does your scalp feel tender at all?
I've just had a GCA relapse and my pain was concentrated in the neck, head and around the ears. If you experience any visual disturbances, don't hesitate to go to Emergency.
Hopefully, it's PMR.

I am titrating down have been on prednisone since February started at 15 then 12.5 and for the last two weeks 10 but am suffering bad brain fog a very muzzy headache and feeling nauseated and have little appetite. My GP said it would be due to the reduction. She also said that after 10 mg you titrate down 1mg per month do you ever get off this drug and my rheumatologist wants me to commence methotrexate by injection too I am very confused

You are one of the lucky ones if just on since February. Many get caught for years. I know we are all trying to make sense of what might work and its obviously not a good idea to take advice from a non medical person. Each person can have so many other things going on. Some are convinced your diet will cure it. It cant hurt but it doesnt take into account each individual. Your GP might be right but I considered myself lucky that I got off in 6 months. I was able to go from 10 to 7.5 then to 5 and tried twice to go from 5 and couldnt. I just kept trying. You can get off as long as the PMR is stable. They should be checking your markers. Sed rate - CRP. I do not understand Methotrexate. That is a nasty drug that can cause cancer in your lump nodes. Used for inflammation in RA. Completely tanks your immune system. I dont get it. Seems they would try a newer drug like Actemra or Kevzara prior to that. Maybe cost of the drugs? PMR is a nasty condition made worse because the prednisone is the drug of choice. But PMR does not seem to be something you cant get past. Not like RA or cancer. Good Luck. I would ask more questions. Keep trying it does get better.

Thanks for the concern, Teri. I've never had pain near ears or on my head. I do keep an eye out for things which could be Giant Cell Arteritis. Sorry to hear you've had a recurrence of GCA. A lot of people might not be aware of the symptoms, so thank you for the reminder.

Right now, I am on all three drugs. Prednisone down to 8 mg. Methotrexate and Kevzara. First thing to go will be the pred, then methotrexate. Kevzara may be with me for awhile. The pain in my shoulders and neck is new. I’ve had pmr for 18 months and it has mostly been in my thighs and hips. This intense pain and stiffness in neck has triggered a round of migraines. Using moist heat has backed everything off and I am feeling much better. One thing for sure. While everybody is different, the Kevzara is making a difference for me. I forgot to take my dose last week because of family emergency. And the flare I had I think was a direct result of not having that and tapering down to 8 mg as most of you know under 10 is the danger zone. For me the drop from 9 to 8 has been very difficult.

Please talk to an ophthalmologist to make sure it is still not Giant Cell. Giant Cell can blind you so never feel embarrassed asking your ophthalmologist to check. I actually have mine ophthalmologist's cell phone number jic I get symptoms. She wants me to call her directly. No time to waste.

I have had Trigeminal Pain but it goes into the face. My neurologist diagnosed it.
https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/symptoms-causes/syc-20353344
Your pain does not sound like trigeminal problems but you might want to see a neurologist to eliminate nerve issues. Inflamed muscles can cause nerve issues and possibly nerve damage as well.