AMY (was, Re: A reminder about the jaw)

[Guest guest]

Hi Amy, so sorry to hear about your own pain. I don't have clicking or popping

all the time (well, at least not before my surgery, lol) either.

I'm going to the dentist for the bite guard in a few weeks and will talk to him

more then. I'm also going to talk to my rheumatologist about some imaging of my

jaws to verify the diagnosis.

I was diagnosed with RA based mainly on my symptoms, which at the time was

morning stiffness and severe pain in the mornings. It started in my hands. Then

I had an attack of scleritis (eye pain and inflammation) and that sealed the

diagnosis. My labs, however, were negative for RF and CRP and SED were both

normal, at least at that time. My arthritis started off and then rapidly

progressed. I have been on methotrexate, achieved medicated remission on Enbrel,

and then it stopped working. Tried Humira and it did nothing. Orencia has

finally worked but not without its side effects and it was very slow to start

working for me.

I guess what I am trying to say is that your labs can be normal and yet you

still have RA. I would definitely get the ear/jaw pain worked up and imaging

done (xrays and MR or CT) and start being treated more aggressively, because if

it is attacking your jaw it is indeed active.

If your rheumy insists that if your labs are 'normal' you can't have RA< they

are sadly mistaken and you need another opinion.

Keep us posted on how you are doing and email me any time, ok?

\

> and put me on naproxen. But now that my jaw is involved I

> am wondering if

> it is osteoarthritis. I suppose I should ask her to do the

> Rh test.

>

> If you don't mind telling me, how were you diagnised with RA?

>

> Amy and Lucy, poly, 7

>

>

>

> On Wed, Aug 12, 2009 at 9:08 AM, Tepper, Michele

> <MTepper@...>wrote:

>

> >

> >

> > - so sorry to hear you have been going through all of

> this. I am glad

> > you are feeling better now and hope that continues. Thanks for

> the reminder

> > about telling a complete history even if it seems minor.

> > I totally understand the Rob in remission bit. Sounds like

> who is

> > also in " remission " yet complains of back pain, has a swollen

> ankle, and

> > pain in his hands again. Plus a strange GI problem has begun

> recently. So

> > once again our two young men are quite alike, huh?

> > Hope your recovery goes quickly, Michele ( 22, spondy)

> >

> > ________________________________

> > From: < %40>

> [mailto:> <jra-

> list%40>] On Behalf Of

> > and Schulz

> > Sent: Tuesday, August 11, 2009 7:37 PM

> > JRA, List

> > Subject: A reminder about the jaw

> >

> > Hello list,

> > Last year you may remember our own Donna having such a

> traumatic issue with

> > her surgery because of multiple failed attempts to intubate

> her for surgery.

> > Just wanted to add my own 'adventures'.

> > A few weeks ago I was having continued ear pain and finally

> decided to

> > consult a doctor about it. Come to find out, the pain was not

> actually in my

> > ear but in my jaw. It was decided that the RA has invaded my

> jaw and the

> > fact that I occasionally grind my teeth at night was making it

> worse. I now

> > have an appointment to get a bite guard made to prevent

> further trauma to my

> > jaw.

> > Over the course of my lifetime I've needed surgery because of

> > endometriosis. Although the battle against that horrible

> disease has been

> > won, the adhesions from all the surgeries live on. For the

> past 7 weeks or

> > so I've been having increasing bowel issues and it was due to

> adhesions. It

> > finally got so bad last week that I was scheduled for surgery

> on Monday

> > 8/10. Well, last week the adhesions progressed to the point

> that my bowel

> > was twisted, and the only foods I could tolerate were clear

> liquids. My

> > surgery was moved to Friday and I'm happy to report that I

> came home from

> > the hospital on Sunday and I'm doing so much better! SO

> thankful for that.

> > HOWEVER Saturday morning, after becoming more lucid, I

> realized that the

> > inside of my upper lip was very swollen and had a grape-sized

> raw spot...and

> > being a former critical care nurse realized that my lip had

> likely been tied

> > into the breathing tube they use for surgery. My jaw was also

> hurting. Over

> > the course of the next few days, my jaws have become so stiff

> and painful

> > that I've had to start prednisone, since I can't get my

> Orencia or

> > methotrexate for 2 weeks after the surgery date.

> > My anesthesiologist was in and out of my room, pre-op, so

> quickly that I

> > totally forgot to tell him about my jaw. My guess is that he

> found it

> > difficult to intubate me and was rather rough. I don't know if

> telling him

> > prior to the surgery would have saved me this horrible pain

> and situation,

> > but I sure do wish I had the opportunity to educate him more.

> > SO, the point is, if you or your child have arthritis and any

> issues with

> > your jaw, or your neck, that would cause problems with your

> anesthesia, be

> > sure to meet beforehand with the anesthetist and go over this

> very important

> > part of your medical history.

> > , adult onset RA, mom to Rob, 20, JAS

> >

> >