TMJ pain.

[Aleish]

PMR was started on prednisone treatment at 20 mgs and all over body pain started to improve on day 2. Actually sed rate after 12 days of prednisone went down. Was 65 and went down to 50. Still being seen to determine GCA. TMJ pain is relentless. Even though from neck down I'm better, if it's also GCA I'm wondering if the prednisone has to be stronger to clear that issue? As said still not done getting completely diagnosed. Other symptoms of the head are better. Headaches not as bad. Eyes not really an issue, but have one more appt with ophthalmologist. Hate to get a higher dose of prednisone because it is effecting my blood pressure. Not doing biopsy. Have been on prednisone for other issues this year and an accurate test would be difficult. Anyone know if a scan would be appropriate? Any input would be appreciated.

[PMRpro Ambassador]

There are a few centres who do an ultrasound of the temporal artery - it was investigated in the TABUL study and found to be equally good for diagnosis as a biopsy. You would have to ask your doctor if it is available - it does require trained operators and that isn't a given.

Normally a GCA patient would start of at least 40mg, higher if there are visual symptoms.

[Aleish in reply to PMRpro]

Are you in the states? I'm in Florida. If I have to go on 40 mgs prednisone, is it very bad for pressure?

[PMRpro Ambassador in reply to Aleish]

No, I live in Italy! If it is your BP you are worried about - there is medication for that! Unfortunately, if you have GCA you have the choice of pred at a higher dose unless you can get funding for Actemra/tocilizumab - a newly approved monoclonal antibody that is very expensive.

[Aleish in reply to PMRpro]

Blood pressure meds not working well and having nuclear stress test next week. I though I had read something negative on the above mentioned med. I will go back and read it.

[piglette in reply to Aleish]

Hi Aleish, have you tried beetroot juice or even beetroot supplements. They are supposed to reduce blood pressure.

[PMRandRA in reply to piglette]

Aha! This could be the reason why my BP was 117/73 last week at my annual MOT!

I have been absolutely gormandising on Baxters pickled beetroot! Can't get enough of the stuff.

[PMRpro Ambassador in reply to Aleish]

You will find something negative about anything if you look. However - when it comes to GCA then there hasn't been time for much negative press for Actemra - it has only been approved for GCA in the last month or two!

[Tj2017 in reply to PMRpro]

Hi PMRPro,

Yes you are right yet it has been approved for RA for sometime in the US. I also believe that wasvfor the infusions not injectablees which have been approved for GCA. Injectabls supposedly have less side affects

In regards to side affects, I certainly found a "mixed bag" of good and negative comments. The negative comments weren't as bad as methotrexate.

In regards to effectiveness only time will tell as you say. The patients need to be taking it for more than year, or taking and stopped for more than a year to be able to compare their results to the manufaturer's claims for GCA. Even with that, the clinical study allowed patients to deviate from the steroid taper protocol as needed to help managed symptoms. Overall prednisone consumed was less, yet the data doesn't add any other details.

Thanks again.

Best,

TJ

[PMRpro Ambassador in reply to Tj2017]

Suppose it depends how you look at it - methotrexate has been used for millions over the years so there are likely to be more negative comments. The MABs aren't used as first line in RA - the patients have to have "failed" the DMARDs first so there aren't that many comparatively speaking who get that far down the list.

[Tj2017 in reply to Aleish]

Hi Aleish,

When I first started taking prednisone my blood pressure shot up. I was already on BP medicine which had been successfully controlling my BP for years. It wasn't "bad" just slightly higher. My medicine was increased and now my BP is under control. The docs expects the BP to drop as the amount of prednisone is dropped. Everyone is different. I'd rather be on the xtra BP med than risk my vision.

Hope this helps answer your question.

Best

TJ

[30048]

I experienced jaw pain with GCA...still feel it is one of my symptoms that returns when I flare. Just recently the doctor told me she thought I had arthritis in my jaw. That could be ...I would just keep track.