newbie with jaw pain

[pattypoo01]

Hi all you nice people! I'm so happy I found this sight. I've been reading it everyday and have learned so much more than any of my doctors have taught me. I'm 73 female in florida. After a million tests and blood tests, I was diagnosed with pmr in Sept.2018 The rheumy gave me a shot of pred right at the office in the first visit because I could hardly walk. Then 15 pred for two weeks than after next visit dropped it down to 10. I was doing fine....it was like magic and I had my life back. The plan was to take 10 for a couple of months and go back to him. I changed doctors then because the first rheumy had the worst attitude of any dr. I had ever seen and every single review I read about him advised anyone to run from him.....I don't know how he keeps his licence. I went to see him in the first place because he was the only rheumatologist that had an opening within a couple of months. All the rest in my area were at least a 6 to 8 month wait.

I discussed with my gp that maybe I could just have her take care of me but she felt more comfortable with a rheumy in the mix. She managed to get me another appt in Dec. with a more reputable rheumy. He agreed that it sounded like pmr but did some blood tests of his own including an aanca. That was high so then he did an anti-proteinse 3 which came out 20. The range is nothing to 3.5.He wanted me to have a chest xray so I was able to whip out the results of some lung scans that have been monitering small lung nodules for a few years...nothing grows and the last scan showed one got smaller. So because of all that he says he is 90% sure I have wegeners (GPA) and maybe all those pmr pains were the GPA.

He had decided to wait and see what develops and watch my lungs, kidneys and how I feel. Thats his plan.

My last bone scan showed osteop. He wanted to prescribe pills but I'm the queen of side effects and I refused. He bullied me into a shot of prolia. (I should have argued but I'm a wimp) Anyway I was down to 10 mg prednisone and he didn't suggest methotrexate so I was happy. He told me to do a slow taper to 7 pred. and come back in a couple of months. A week ago I was almost down to 7 1/2 but started getting pains and my jaw was bothering me. Not when I chew just sort of constant. I put my self up to 12mg and trotted back to rheumy who really didn't help. Said maybe tmj......what? My body is turning on me and he thinks I have TMJ? Go back in two months and take 10 for a week and taper to 8. (down 1 mg per month...I'm fine with that)

But I'm not tapering. I'm at 10 and I have company coming this weekend which is going to be stressful and for the last few days I've been living with this jaw pain. It's not when I chew its just there all the time. Tylenol sometimes help for a while but I'm considering taking myself up a few miligrams of pred just to get past this week. Then worry about the consequences later. So what do you guys think? If you can make heads or tails of my rant. I have symptoms of pmr. I have been told I probably have this horrible wegeners thing. I'm afraid the jaw thing is gca but it doesn't hurt when I chew it just hurts all the time. I just need to function for another 6 days and then I'll go to my gp or rheumy or dentist or whoever I can to have it seen to. I'm thinking maybe take 15mg pred for 3 days then drop back to 10. I How does that sound? This jaw pain is keeping me from thinking straight. I'm not looking forward to the round of doctors I was subjected to when this whole journey started. I know I'm not as bad as some others on here but reading all the nightmares is scary. I admire all of you that are going through this auto immune thing and trying to help with advice as you suffer yourself. I wish I could meet and hug you all!

[alvertta]

I have GCA. My jaw froze. I could barely open my mouth. So it was not so much pain as immobile. That was why I went to emerg and was diagnosed.

[PMRpro Ambassador]

If the jaw pain isn't associated with chewing then it is quite unlikely to be GCA - and if you have positive ANCA then it is also pretty unlikely your symptoms are due to PMR but another vasculitis. Jaw pain is not normally associated with GPA but it can be.

I suppose if raising the dose helps then it is fair until you see the rheumy again since it is soon but no-one here is medically qualified and no-one, even if they were, should tell you to raise the dose like that. Certainly , most of us would do that if they were flaring.

[pattypoo01]

Thank you for your replies. If my jaw pain is something new the doctors haven't mentioned yet (not pmr) then I should certainly take pmrpro's advice and not raise my pred vdosage. I then would be having to taper that much longer. I just thought the pred is good for inflammation and maybe my jaw pain is due to inflammation from whatever horrible thing these doctors will come up with next. The first rheumy said I have pmr based on my symptoms and very high crp and sed rates. But he said I "presented atypically." The second rheumy said GPA but maybe a mild form because my symptoms or lack of are "unusual." I asked him if the prolia shot he gave me could cause jaw pain , he said no. So....PMR? GCA? GPA? Prolia side effect? I'm so confused and depressed and frustrated. I used to avoid doctors at all costs! I guess karma came and bit me in the butt.