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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 ErinF

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Posted 04 August 2007 - 01:09 PM

Hi everyone! It's been a while since I posted and I've missed everyone! Hope you all are doing well. I've had a really busy last 2 months and have hardly had time to breath! Anyway, after getting some fabulous test results from the rheumatologist in Madison back in June, I just had another round done to see where I'm going and it's sort of back downhill. My ANA went up to 1:640 from 1:320, and my pattern has evolved from homogenous to speckled. The rheumatologist had hoped that the Synthroid (for the Hashimoto's) would lower the ANA but instead it's gone up, as has the number of the thyroid peroxidase antibodies. No explanation for the change in the pattern as of right now. They're going to run all the follow up ANA stuff---check again for the SCL-70 and see if that's back. At this point we're hoping it's just the Sjogren's causing the changes in the ANA. It really stinks to be feeling so positive and thinking that everything was a fluke just to have it come back with a vengeance. For a while I wasn't having any tingling in my fingers but that's back now too, and some minor swelling in a couple of fingers that comes and goes. I was on Indomethacin for the Ankylosing Spondylitis but had a bad reaction to it so now I'm on Piroxicam, which doesn't do a thing I have to say. I see the rheumatologist again on Sept. 10th but my regular doctor is foaming at the mouth at this point--she's absolutely still convinced that I'm in the early stages of a more serious connective tissue disease (you'll remember that she wanted me on Plaquenil immediately) and thinks the rheumatologist is too cautious. I think I may go with her on this one and do the Plaquenil for a few months and see what happens. Oh, the merry-go-round is so fun, isn't it?

ErinF

#2 nan

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Posted 04 August 2007 - 04:35 PM

Erin,
What a bummer! I think you primary care physician sounds smarter than your rheumatologist. I send good vibes your way. :D
Nan

#3 Sweet

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Posted 04 August 2007 - 04:41 PM

Hi Erin,

So good to hear from you!!! Sorry for all that you are going through. Frankly I would start on the Plaquenil, you just can't lose anything with that! Wishing the best for you.
Warm and gentle hugs,

Pamela
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#4 Shelley Ensz

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Posted 04 August 2007 - 04:47 PM

Hi Erin,

It's great to see you back again! I'm sorry things are going downhill again. Sometimes its hard to tell what is worse, the illness or the confusion over the illness, eh?

Perhaps you could ask your local doctor to express her concerns in a letter to your rheumatologist.

I hope that you can get a more accurate assessment on your next visit. But with connective tissue disease, and with more than one, it can often seem like a never ending rollercoaster ride. Anyway, it's great to have you back.
Warm Hugs,

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#5 WestCoast1

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Posted 04 August 2007 - 05:40 PM

Hi ErinF,
I was wondering about you and thought we might not hear from you again, but I am glad to hear that you are still moving along. I am so sorry to hear that you are once again on the merry go round!!!!! I do hope that you find a med that deals directly with the AS.

As far as the antibodies I would also wonder if Plaquenil would bring your numbers down a bit. My TPO went down from 600 to 200 over a years period after starting Plaquenil. I can't say for sure that that is why it went down, but it had been so high for so long before that I have to wonder. I havnt had it checked in a while...but now you have me curious.

So how have you been feeling for the past two months? Anything new, better or worse?

thanks for the update!
*WestCoast*

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#6 jefa

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Posted 04 August 2007 - 08:56 PM

Hi, Erin, good to seee you again. What a frustrating situation. I'm inclined to agree with your primary care physician on this one. It will take a while for the Plaquenil to kick in so don't put it off too long.
Warm wishes,
Jefa

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#7 LisaBulman

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Posted 05 August 2007 - 02:05 AM

Hi Erin,
Good to have you back! I agree with everyone else here, don't wait! Have your primary care physician send a letter to your rheumatologist and start the plaquenil right away.

Please do keep us posted on your tests results and what your treatment plan will be.

Hugs,
Lisa
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