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What do you think?

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Old 03-11-2012, 03:47 PM   #1
Join Date: Jun 2005
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pambyboo HB User
What do you think?

Hi. Haven't been on here in a while, but I wanted to ask what you guys thought. I've been on Plaquenil for over 5 years now, and it generally does well for my fatigue. My rheumatologist put me on colchicine about 2.5 years ago for an ulcer (like my mouth ulcers) that developed on my labia, so he was thinking possible Behcet's disease. The colchicine has done wonders for my aches and pains, but now he want's me to come off of it.

This is my issue. My rheumatologist that I see now, is the only one who believes that I have a connective tissue disorder (probably lupus). My problem is, I don't like him. I saw him this past Tuesday, and he cut me off mid sentence when I told him how crappy I was feeling, and said "well I don't see any evidence of your disease in your clinical findings". My ANA came back positive a day later for the first time in over 3 years. Sometimes he is really chatty and nice, and half the time he acts like he doesn't know why I'm there. I've seen a doctor at our teaching hospital 30 minutes from here, and despite all my lifelong symptoms, told me I needed to see a psychiatrist because I had issues with my mother dying when I was 8 months old. I saw a female doctor at the Mayo clinic, and despite my low C3-4 levels, low WBC level, and positive ANA told me I needed to look into other factors for my fatigue...and no kidding, her quote was "because after all dear, I'm tired too". My family doctor refuses to prescribe the Plaquenil and colchicine, and I can't go to another rheumatologist in the current group.

I'm stuck. I feel so crappy right now, but can't get anyone to listen to me. I am seriously thinking of stopping all the meds, and getting really sick and then going back to the Mayo clinic. I really just need a doctor to listen I guess, and I can't find one!

Here's my symptoms:

1) Villitis in both pregnancies, with two IUGR babies. Two miscarriages.
2) Mouth ulcers. (Colchicine has decreased these dramatically).
3) Positive ANA. Highest was 1:320, speckled pattern. (One homogenous pattern reported).
4) Postive RA factor once, at 1:80 I believe.
5) Usually low WBC count.
6) DVT.
7) Aches and pains.
8) General fatigue. (Severe right before mouth ulcers erupt).
9) Ulcer on labia once.
10) Low C3-4 levels. (Mildly low).
11) I also broke out in a really weird rash when I was pregnant...on the same side of both of my thighs. It itched severely, and I was so bruised from scratching the doctor asked if I was being beaten. He tested me for some type of purpura that pregnant women get, but it was negative.
12) Malar rash at time of first ANA coming back positive.
13) Mildly high IgM level.

All other labs are negative. What do you think?

Last edited by pambyboo; 03-11-2012 at 03:51 PM.

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Old 03-14-2012, 05:22 AM   #2
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Re: What do you think?

Pambyboo, much as I hate to say this, might it pay to stick with your rheumatologist? Because despite his sometimes dismissive manner and comments, at least he's taking you seriously, treating and monitoring you. Another way to view this: might a new doctor "undiagnose" you? Discontinue all meds? Send you packing?

Do you know WHY your rheumatologist wants to discontinue colchicine? Is it a med that shouldn't be taken long-term? Stopped if symptoms abate?

If it's of any comfort, I've had awful moments even with the two drs. who helped me the most. They said/did things that induced COLD FURY. I say "cold" because I weighed the probable fallout (if I left) vs. how much crap I can withstand (quite a bit, apparenty, from years in business world... And age. I'm certainly getting up there. )

Like you suggest, I too suspect that your symptoms & labs are being viewed as borderline, not enough for a "for sure" diagnosis. (For example, ANA positive only occasionally, and only low-positive at that); one facial rash; etc. And I think Behcet's might be even harder to Dx than lupus.

Re: DVT's and miscarriages: have you been checked for APS (antiphospholipid syndrome)? There's a "stcky post" on APS at the top of the thread list.

I'm really sorry you're struggling with both symptoms and doctors. I hope others chip in soon, and that you're able to make a decision that YOU are comfortable with. Hang in there! Looking forward to updates, Vee

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