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

[Guest guest]

, my son Louis started Orencia a coupll of weeks ago. I

wondered if you could share what side effects you have had from it? I

imagine more infections? So far we have seen no benefit. Thanks Jan

On Aug 12, 2009, at 10:02 AM, and Schulz wrote:

> 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

> > >

> > >