Re: jaw involvement = Rose's question

[Guest guest]

Geeze ,Bev

You always think you have it bad, and then you hear about someone else.

not much I can say but that I wish you better days ahead.

Know about the high pred dose when youngest son was on a little less

than your for a year. About 10 years ago, he had a kidney disease,

where the only treatment was massive doses of predisone.

Rose

Rose

On Dec 14, 2006, at 11:05 AM, Bev Hannon wrote:

> Rose, our diagnosis is different, but we both had/have jaw problems.

> Mine was diagnosed as Polymyalagia Rheumatica - started in my ear and

> jaw. First it felt like I was developing an ear infection, then my

> jaw

> and teeth started aching. But my Dr. said everything was all clear,

> maybe it was TMJ (Jaw joint), but a physical therapist said no. My jaw

> tired easily from talking, and I had difficulty getting my mouth open

> while eating, difficulty chewing. this went on a couple months

> before I

> had an " attack " where every joint in my body hurt, had throbbing head

> ache, severe aching in jaws and teeth, felt like my throat was closing

> up, and my temples were swollen and extremely sore. All I could do was

> sit in the recliner and cry. My Dr. put me on 80 mg. Prednisone

> right

> away and scheduled me for a temporal biopsy. the surgeon removed 2 "

> pieces of the arteries in my temples to determine if I had Giant Cell

> Arteritis, which could have caused permanent blindness. Biopsy was

> negative, but I continued with the sore joints including jaws and

> teeth. That was early this year.

>

> that much Prednisone made a Zombie of me. when my Dr. decreased

> it, it

> was too fast and I went through " withdrawal " , but am now down to 10

> mg./da. and hope to start reducing that VERY gradually after the

> holidays. However, my sed rate kept high 119 or 89. I walked like

> enstein, and had great difficulty going up or down steps. My

> Dr's

> recommendation was to increase Prednisone. I refused and went to a

> Dr.

> my nephew with RA had used who treats connective tissue diseases

> (often

> called auto-immune) like mine, RA, fibromylagia, lupus,

> scleroderma...as

> bacterial infections left over from a previous infection - with

> antibiotics. I received 900 mg. Clindamyacin 2 x day via IV for 5

> days,

> then Minocycline 100 mg. tablets 2 x day for the long haul. I no

> longer

> have any stiffness or pain in or near joints, but still am lacking

> energy and have some problems with balance (never have had GOOD

> balance,

> but it's slightly worse now.) My jaws are extremely sensitive to the

> cold, so I keep a scarf handy at all times to wrap around my neck and

> jaws. It looks weird, but makes me more comfortable.

>

> Good Luck to you.

>

> Bev in Iowa

>

>

>

>

[Guest guest]

Hi,

This is just a quick response to the jaw involvement question...Dawn,

I believe. I had the same ear pain that became jaw pain early in my

dx. Then i could only get my mouth open two finger widths. I was in

sad shape then, sat all the time, cried, slept, could hardly get food

into my mouth. I am 18 mo. into my AP treatment, but the jaw problem

was gone months ago. I open my mouth enough to get 4 fingers in...not

sure if that is less than before RA, but it's enough to eat anything i

want. (I began using my fingers as a handy measurement to see if i was

improving, lol...sounds like i sit around with my fingers in my mouth

=0...LOL)

It's very important to get your inflammation reduced (fish oil,

turmeric, ginger, etc). I also go for trigger point therapy, and that

helps break up areas where the tendons have tightened...which may

release your jaw.

Hugs, Jan ap 18mo ~ ra