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Biomarker for Diffuse Scleroderma skin has been discovered!


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Rheumy Visit


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#1 ssakar

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Posted 10 January 2007 - 11:33 AM

Hello,

I had my 3 mo. followup yesterday with a new rheumatologist. She was WONDERFUL!~ Apparently my Scleroderma is still progressing pretty rapidly. Her focus is to try to get me into remission. Oh - that would be sooooo nice!!

Originally I was taking Trental and Norvasc and Prednisone. She added COLCHICINE. I hope it helps with the skin tightness! Anyone here taking it? Any luck?

Then she wanted to do some testing on my lungs and esophagus.....but I didn't have the money. She was talking about Cytoxin and Placquenil.

She changed my pain med......so I'm really curious to see how it works. I guess we can't discuss the 'drug name' here......but I would really like to talk with someone about it. Not sure how - other than emailing me privately??

She also told me about some electric gloves (you plug in). But she said they were also on the expensive side.

Until my disability gets reviewed and hopefully 'granted'......I'm out of luck when it comes to the financial end. Once again, my parents helped me out.....the only thing is they can't KEEP helping me. I hate to keep harping on the 'money issue'....but it IS a big deal when you are so sick and can't get help. It just doesn't seem fair.

Oh....also my rheumatologist suggested I write my Congressman about my Scleroderma.
But she didn't really say "what" to say.....

Anyone have any thoughts here?

Thanks,
Sakar

#2 Sheryl

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Posted 10 January 2007 - 05:16 PM

I made it to Florida and have access to my aunts computer. Awesome!

Sheryl
Strength and Warmth,
Sheryl

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#3 janey

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Posted 11 January 2007 - 02:43 PM

Sakar,
I'm so glad that you like your rheumatologist! That's a great start. Sorry to hear that she thinks your sclero is progressing pretty fast. I couldn't find much on Colchicine and scleroderma, but what I did find wasn't too encouraging. Here's is a summary from PubMed:

Long-term treatments for systemic sclerosis: what are the perspectives? It states Traditional medications such as colchicine and D-penicillamine are disappointing in clinical practice... It is a June 2002 article so I tried to find more up-to-date stuff. The only thing I did find that it is used for Calcinosis in rheumatic diseases but again - not really proven to be effective. Sorry I couldn't provide better information for you.

In reference to the gloves - Have you looked into WarmMeUps? A lot of people seem to like them.

Please send me the name of your pain med and I'll check and see if it's discussed on ISN. Just click the "Send a Private Message" button. I sure hope it works for you!

Big Hugs,
Janey Willis
ISN Support Specialist
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(Retired) ISN News Director
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International Scleroderma Network (ISN)

#4 nan

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Posted 11 January 2007 - 04:32 PM

Plaquenil works well for me. Try warmmeups for your hands. They're not that expensive. There is a link posted on message board.
I am sorry to hear that your scleroderma is progressing, but I am so glad you like your rheumatologist.
Nan Try www.warmeups.com

#5 ssakar

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Posted 11 January 2007 - 05:09 PM

Thanks for the links Janey. I was told to take the Colchicine 3xday....I started them today. She said they were prescribed alot for 'gout' patients....and that it may help the tightening of my skin. Oh how I would love for my skin to loosen up. I can't bend over -- or straighten my elbows out AT ALL.


And I just checked out the WARM ME UPS.....Now that is something I would really be interested in. Thanks for sharing.

Sakar

#6 Kamlesh

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Posted 11 January 2007 - 05:37 PM

Hi Sakar,

Sorry to hear about your problems. My doctor prescribed Colchicine and I have been taking it once a day for the last 18 months. It is mainly for Gout treatment, but somehow helps in Scleroderma.

Kamlesh
Kind regards,

Kamlesh


#7 ssakar

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Posted 11 January 2007 - 07:44 PM

Hi Kamlesh,

Thank you for replying. It is comforting to hear that it helps you.
Do you find that it helps the tightening of the skin? What results have you found with it?

Also, do you know if there are any side effects for taking it long term? (especially since I'm taking it 3 x day)

Sakar

#8 ssakar

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Posted 11 January 2007 - 07:50 PM

Hi Nan,

I'm glad to hear Plaquenil works for you.

My doctor hasn't started me on it yet though.....I think she needed to do further testing.

Isn't it mainly for Pulminary Fibrosis?

How does it help you?


I like to hear how certain meds work for others....mainly because I'm still so new to all this stuff. Plus it gives me hope.

Thank you,
Sakar

#9 nan

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Posted 12 January 2007 - 01:47 AM

It helps with my pain and swelling. I don't know if it helps with Pulmonary fibrosis. I was just recently diagnosed and haven't had my pulmonary function test yet. I was originally given it due to Sjogren's. take care
Nan

#10 Heidi

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Posted 12 January 2007 - 01:56 AM

Hi,

Plaquenil is an anti-malarial drug and is frequently used for patients with Lupus, although I think there are quite a few of us here who are taking it as well. It is considered a D-MARD drug which means a drug modifying drug as it is believed to slow the progression of the disease. It primarily targets the internal inflammation that we experience which helps with the general feeling of fatigue and pain.

I hope this helps.

Warm wishes,
Heidi

#11 bookworm

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Posted 13 January 2007 - 09:52 PM

Hi, Sakar!

The expensive electric gloves and the WarmMeUps are probably great for keeping the hands warm, but, if you want a cheap fix, here's what I do: use hot corn bags! They probably cost abut a dollar or two to make. If you don't sew or don't have time, just get you some deer corn at a feed store and put some of it in an old sock. Put the sock into the microwave -- try one minute and experiment until you get the proper amount of heat.

If you do sew, cut out two pieces of cloth about 9" x 9 " then put right sides together and sew up the seams about 1/4 " from the edge of the cloth. Leave an opening of about 3 " and put in about 18-20 oz. of the corn. A funnel with a wide mouth is helpful. Rice or other grains also work, but I like corn best.

I buy the corn about five lbs. at a time. You can buy huge bags (50 lbs. or so) at discount stores, but that's 'way more than I need! So, I just go to a feed store and have them weigh out what I want.

Don't stuff your bag too tight. You want to have a little room in there for the corn to shift and mound so you can get it to curve around a sore shoulder or a finger or whatever hurts! After you get the corn in there, hand stitch the hole closed.

These corn bags feel wonderful and are so portable! I take mine in the car, to the grocery store, church, funerals, weddings, movies -- anywhere I like. I always have several of them made up. I often sleep with one at my feet and another over my hands. I also give them to others for holiday presents and so forth.

If you use a sock, just put in the corn or rice and then tie the top with a ribbon or string. When microwaved, the grain gives off a moist heat and it feels great! The shape of the sock makes it ideal to drape around your neck.

By the way, you can make the corn bags in any shape you like. They don't have to be 9" x 9".

Mary in Texas






#12 ssakar

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Posted 14 January 2007 - 07:01 AM

Hey Mary In Texas......That is a wonderful idea. I will have to check it out.....and at least it's CHEAP!!!

Thanks alot,
Sakar

#13 janey

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Posted 14 January 2007 - 07:10 AM

Mary,
I tested out your idea last winter, with dried pinto beans. I didn't have the dried corn, but I did have the beans. They worked great! So Sakar, I can testify that Mary's idea is simply marvelous. Thanks again Mary!
Big Hugs, Janey

#14 bookworm

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Posted 14 January 2007 - 08:05 AM

Hi Janey and Sakar,

I'm glad you like the idea. Janey, I had wondered about beans! Nice to know they work!

Sakar, (is this what you want to be called?) I also wrote you a private letter regarding what pain medicines I'm taking and sending you some neat websites about low-cost drugs, but just as I was ready to send them to you, my computer ate them. It was very late, so I decided I'd start over today! I'll be re-writing that in a little while.

Mary in Texas