Severe back pain...

Hello: I joined the site yesterday and am so appreciative of the support from many of you while I was in the ER yesterday. I looked up the site on my wi-fi tablet and while reading your responses, I felt much less alone. Thank you!

They told me from the get-go that there was nothing that they'd be able to do for my excruciating lumbar back pain. Said I needed an MRI. X-rays were done but cannot show inflammation. I get episodes of severe inflammation and spasms that come from nowhere and can last for days, in different areas and organs due to an active connective tissue disease. The doctors called it lupus until the malar rash dissipated with treatment. I'm on immune suppressants for it, which has really helped, but have been asking the rheumatologist to increase it for over a year and he will not. I am ANA negative (anti- nuclear- antibody).

I can barely move but am meeting a friend tomorrow so that he can take me to see my primary care dr. I have reports of scans showing evidence of scarring and the begginings of atrophy in the lungs, kidneys and pancreas along with severe inflammation in the veins of the intestines causing obstructions. I want to ask my doctor if he can talk to the rheumatologist about increasing the dose of the Imuran (immune suppressant).

I am praying that this will go well. I've been hospitalized thrice since late Nov.
I'm on a waiting list to be seen at a large, highly qualified teaching hospital. I may be seen in August. I asked my rheumatologist to refer me. I have left him messages but get no responses. My next appt. w him is April 5th.

I'm doing all I can do and trying to stay positive.
Would appreciate any comments.
Thanks,
zizz

Post Edited By Moderator (Momto8kids) : 3/27/2012 11:04:05 PM (GMT-6)

Hi Suzie:

I'm on 200 mg. plaquenil X 2 and 50 mg. Imuran X 2.

The rheumatologist does not believe that my illness is bad enough to be treated more aggressively and worries that ,an increase in Imuran could leave me vulnerable to severe infections. As I mentioned, I test ANA neg. and I believe that that makes a huge difference to him. My illness became more severe when on Metoprolol and Pravastatin but when taken off of these, the symptoms and the facial rash continued to get worse. When treatment started, the rash began to disappear and I got much better. However, now the flare ups are much more severe and I believe that the scarring in certain organs may indicate vasculitis. It's been 2 years since treatment begun.

I am changing rheumatologists to one at The University of VA Health System but need to wait 5 more months to be seen. I live in a small town and there are no better choices here, especially for an ANA negative.

Even as bad as it gets now, prior to treatment it was much worse. I was home bound for 5 years. I do hope however, that the cat scan reports of the scarring and inflammation to various organs might prompt my primary doctor to speak to the rheumatologist about my case. I will request MRIs of the pancreas, kidneys and lungs to be done at UVA and hope that Medicaid can provide transportation.

Zizz