on my way to rheumatologist, anxious for sure!

[zizzcat]

Am on my way to UVA , a teaching hospital in Charlotsville,, VA.
These doctors have in mind to take me off immune suppressants completely.
I am armed with reports of a wrist with torn tendons, cartiledge damage, sacs of fluid and a fracture sat the juncture of the forearm and the wrist. My orthopedic dr believes that surgery or increasing the imuran r the only solutions and that the same type of degeneration is taking place in the other joints which hurt..

Man also bringing a report of a CT scan of the lungs showing ground glass opacities, causing interstitial lung disease.

Am bringing my script from the pain clinic that shows a potentially high increase of how I am allowed to treat the pain. Am bringing the bottle of Robitusson w code in and a medication for advanced COPD. Most would not have become necessary if 2:3 of my immune suppressants had not been cut off.

i woke up unable to breathe or take a shower on my own.
My temp was over 100..My oxygen in the finger thing was 83 and gradually increased to the low 90's.

Am not taking any more meds till a after the appointment .

I thank everybody whose been supportive .
will let everyone know how. It goes.

[Pete]

Hope the docs at UVA treat you competently. If not, Johns Hopkins is just a few more hours away. Good luck!!

[vdub]

An SO2 of 83 is pretty low. Good luck!

[Alysia]

Sounds like you need a serious wg treatment asap. Dont let them dismiss you. Good luck and please update us.

[zizzcat]

Hi, sorry I could get back to you till now.
your support definitely helped my attitude after the rheum docs.

My charger wouldn't charge my phone and I felt too sick to fool with it.
it's my only internet access.

In any case, the appt went better than expected, probably due to the
reports I gave them and the fact that I'm seeing a new rheum doc soon.

i tried to explain that my fever was due to a flare up, but because I weezed
and have COPD, ( quit smoking nearly one month and a half ago) they believed it
to b a bronchial infection.

What I said to the Teaching dr made no difference but at least they dared not
take me off the azathioprine entirely, which was their plan.
The student's definite concern may have played a part.
God was definitely there with me.

i feel like I have what I need to hang on till my new rheum doc.
in the meantime I can use the time to hopefully generate some
more information that will help my case.

Thank you guys!

[Alysia]

If your wg is active, then low aza will not be enough to kick the wg. Keep on insisting to get a serious treatment.

[zizzcat]

I checked into going to John Hopkins.
they do not take my insurance
will check into financial assistance in case this next rheumatologist
does not work out.

[Dirty Don]

Though the hospital system may not take your insurance, individual docs employed at the hospital may/might do so on their own. Mine did in Phx even tho the 'system' wouldn't. Best to you.

[drz]

I checked into going to John Hopkins.
they do not take my insurance
will check into financial assistance in case this next rheumatologist
does not work out.

Have you talked to their financial assistance department about costs and possible help? Some times they have or know about special help to enable people to get medical care.

[zizzcat]

Was in the ER yesterday because I simply could not breathe. Nothing seems to make much of a difference anymore.
the x Ray showed interstitial lung disease with mild edema. The ER doctor tried to get away with just telling me it was COPD exasperation. I corrected him and told him what the nurse was kind enough to tell me about the report. I am going to go pick it and the cd up this morning. I want to see the report myself and save it for when I see my pulmonologist on Tuesday. He had also not told me about the interstitial lung disease until I got the report weeks ago to find out why my lungs hurt so bad. Yesterday I was very angry and very anxious when I couldn't breathe right. My husband was also very upset because this is a fatal, progressive disease and everyone is giving me the run-around. If Wegner's is added to this, it's not good news. There r a few meds he can give me for the ILD, and he has the authority to increase the aza.

so right now I m on 60mg prednisone for 4 days 40 mugs till I see the doctor and antibiotics just in case.

[Alysia]

Was in the ER yesterday because I simply could not breathe. Nothing seems to make much of a difference anymore.
the x Ray showed interstitial lung disease with mild edema. The ER doctor tried to get away with just telling me it was COPD exasperation. I corrected him and told him what the nurse was kind enough to tell me about the report. I am going to go pick it and the cd up this morning. I want to see the report myself and save it for when I see my pulmonologist on Tuesday. He had also not told me about the interstitial lung disease until I got the report weeks ago to find out why my lungs hurt so bad. Yesterday I was very angry and very anxious when I couldn't breathe right. My husband was also very upset because this is a fatal, progressive disease and everyone is giving me the run-around. If Wegner's is added to this, it's not good news. There r a few meds he can give me for the ILD, and he has the authority to increase the aza.

so right now I m on 60mg prednisone for 4 days 40 mugs till I see the doctor and antibiotics just in case.

I am sorry. My heart is going out to you..
It is worth checking if it is indeed ILD or WG in the lungs. I think that biopsy will give the answer. If it is WG it will be good news because that with good treatment your prognosis will be good.
Sending many prayers. Please update us.