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Newly Diagnosed

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#1 Smiling Barb

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Posted 16 May 2009 - 06:04 AM

Hi, I'm new to scleroderma and am still trying to get use to the fact, that I have legs like a football player and that my thighs touch each other. :) :wub: . Smile, I try.

I'm newly diagnosed and also have Rheumatoid Arthritis for over forty years. I'm confined to a wheelchair and unable to walk at all. I'm a retired Registered Nurse and worked up until 1994. My husband and I moved to a retirement community four years ago. He is not in the best of health but is my caregiver. We try to stay busy. I'm into photography and doing a family tree.

The doctor visited me at home after my husband described what was happening to my legs, hard and intense itching. I had diagnosed myself and when she visited, she agreed. The blood test ANA was negative, but the RF was way up. I'm allergic to many medications including all anti-inflammatory meds. The first words that she said were"there is no treatment" which I already knew.

I'm trying to adjust to these words and am trying to live my life the way that I did before. How did you guys adjust and learn to cope? My husband tries to be positive. I am starting to develop the morphea.

Smiling Barb (I'm trying!)

#2 Sweet


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Posted 16 May 2009 - 10:35 AM

Hi Barb,

Welcome to the Sclero Forums, I'm so glad you joined, but I'm sorry to hear of your recent diagnosis. Did they consider putting you on Plaquenil?

I look forward to knowing you better.

One day at a time my Love. :)
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#3 jenee


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Posted 16 May 2009 - 10:39 AM

Hi Barb,

Welcome to the site!! Sweet is right Plaquenil has anti inflammatory properties might be something to mention to your doctor. How are they treating your Rheumatoid Arthritis?

Look forward to getting to know you better.


#4 janey


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Posted 16 May 2009 - 11:15 AM

Welcome Barb!
I'm sorry that you have joined us due to your recent diagnosis; however, I think you will find it's a great resource for information as well as a great place to come and get hugs when you need them. You apparently have been dealing with a lot already with your rheumatoid arthritis. As you probably already know, RA and scleroderma both fall in that category of connective tissue diseases so many people end up with one, two and sometimes 3 from that group.

I'm not doctor, but having had sclero and polymyositis for over 5 years now I know that there are treatments. Sometimes doctors just treat the symptoms, but some doctors treat the disease by trying to slow it down with immunosuppressants. We had a pretty large section on medications and treatments for scleroderma. You might want to take a look at some of this information.

You mentioned skin tightening, but then you also mentioned morphea. Which type of scleroderma do you have - localized or systemic? I ask because the treatments can be different depending on the type. The link I provided are treatments usually used for systemic scleroderma.

If your current doctor keeps telling you that there is no treatment, you might want to find another doctor. Don't give up Darlin'. There are a lot of options out there now for scleroderma and we all hope that more are on the way.

We look forward to getting to know you even more. Please keep us informed on how you are doing.

Big Hugs,
Janey Willis
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(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#5 Shelley Ensz

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Posted 18 May 2009 - 12:54 AM

Dear Smiling Barb,

Welcome to Sclero Forums! I really like your uplifting name. :rolleyes:

I'm sorry you have scleroderma, on top of everything else. But I'd urge you to consult a scleroderma expert very soon. There are many treatments available now that we not available years ago, and most of them are aimed at preventing progression rather than clearing up any damage that has already been done.

Also, there are some very rare skin diseases that are quite similar to scleroderma but that have different treatment protocols.

Anyway, it is delightful to have you join us and I look forward to hearing more from you. You might also want to look at our section on Types of Scleroderma, as well.
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.