More questions after seeing Rheumy.

[Dydee]

Saw my Rheumy today. Inflammation is all in the normal range. I had tapered to 8.5mg then went back up to 10 for a few days because of my jaw pain that originally cropped up along with all my PMR symptoms in the beginning. Then I started going back and forth between 9 and 10 with the idea of tapering again by 1/2 mg per step starting tomorrow. He wants me to taper down to 7 in the next 2 months and not pay attention to the jaw pain. Said it is probably TMJ. But I never had TMJ before so why now? Wants me to go get checked out for that. Said it couldn't be my PMR because it is only on one side!

When he mentioned that my inflammation was normal, I asked if that is because I am on Prednisone FOR the inflammation. He didn't give me an answer, just wants me to taper down before it "breaks up my bones". LOL However, he hasn't sent me for a Dexa scan either. So, wouldn't the Prednisone be controlling my inflammation?I also vaguely recall seeing that not all PMR patients have elevated inflammation markers.

Just to follow up, I did see my new primary doc and he wants me to see a new Rheumy with a better understanding of PMR. The main focus was on my horrible back and hip pain but I go back next Wed. to cover more stuff. He wants me to stay at 8.5 mg Pred for now until we can figure out my jaw discomfort.

[DorsetLady PMRGCAuk volunteer]

Hi,

He may be correct in that it’s TMJ, and sensible to be checked particularly as it’s unilateral.

Your inflammation markers should be in the normal range if the Pred is doing what it ‘s designed for....to control inflammation! So why he didn’t answer that not sure, but remember they do very often lag behind symptoms. Plus you are correct in saying not all patients have raised markers, but if you did originally then I would expect that trend to continue.

As for reducing to 7mg within next 2 months, you can but try!

[Rosh99 in reply to DorsetLady]

Hello you really need to get the jaw pain checked out that was 1 of my symptoms when I was diagnosed with GCA

[Dydee in reply to DorsetLady]

Thank You! I think I will continue to go at my own pace and taper 1/2 mg as long as my symptoms are controlled. I am not fond of his attitude, "taper or break". LOL

[PMRpro Ambassador in reply to Dydee]

Break what? I'll take the risk of abroken bone versus going blind any day ...

[Dydee in reply to PMRpro]

True, plus not everyone suffers bone loss with Pred.

[Dydee in reply to DorsetLady]

Thank You! Yes, that is what I figured. His lack of comment made me think that he just wanted me off Pred. one way or another. At the onset only one of my markers was very slightly elevated, after being on Pred they were right back in line.

[DorsetLady PMRGCAuk volunteer in reply to Dydee]

Does sound as if he wants you off Pred...unfortunately a lot think that way. You have to do what you think is best for you.

[123-go]

Dydee, you need a proper investigation soon to determine the cause of your jaw pain. This should have been carried out at the onset to rule out giant cell arteritis. To put into your head that your bones may be breaking down is unkind and unprofessional and wanting you to rush off Pred for this reason shows a lack of understanding of PMR/GCA; get a dexa scan. Your doctor should assume nothing.

[Dydee in reply to 123-go]

Thank You! And yes, had I been seeing a doc who was knowledgeable about PMR he probably would have questioned that particular symptom. But I had never had TMJ in my life so I too figured that as it progressed along with my PMR symptoms it was just one more pain. Plus my left side symptoms were always a little worse, the same side my jaw pain was and it extended down my neck when my PMR was at it's worst. I have an appt. with my primary tomorrow and will see if he can start me on a path to figuring out my jaw pain.

[daffodilqueen]

I have had a lot of problems with jaw/ear pain but only on left side. My GP couldnt decide what the problem was but my excellent dentist diagnosed TMD and I have various exercises which definitely works. Hope this comment is of help.

[HealthCW in reply to daffodilqueen]

What exercises did they give you for TMJ? my dr didn’t say anything about exercises.

[daffodilqueen in reply to HealthCW]

My dentist gave me the exercise sheet

[PMRpro Ambassador in reply to HealthCW]

Google brings up quite a lot

[PMRpro Ambassador]

I never had markers that were out of normal range - but the ESR was raised for me. I have also had a TMJ problem a few months ago - it suddenly started hurting during dinner! It also clunked delightfully when I moved it. Luckily I had a physio appointment a few days later: myofascial pain syndrome being aggravated by tension in the sternocleidomastic muscle. I wasn't particularly bad, just discomfort at the point where it attaches to the collarbone. She worked on the TMJ for about 15 mins - problem gone!

[Dydee in reply to PMRpro]

Wow, that is a mouth full!! LOL OK, so stress/tension can bring it on. This certainly would be the year to get it then. Although I am generally pretty calm about things I do get symptoms of stress, like the burning pins and needles in my scalp. Geez, what next.

[123-go in reply to Dydee]

Don't forget to mention that tomorrow. I'd make a list to read out or show to him/her. There's nothing so annoying as remembering something you should have mentioned after the appointment! Let us know how it goes, Dydee.

[Dydee in reply to 123-go]

Great idea!!!