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My mom's just been diagnosed

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#1 Barbara B.

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Posted 17 October 2008 - 03:44 AM

My mom has just been diagnosed with scleroderma and Raynaud's . She is 72. And I'm frantic. I'm trying to find out everthing that we need to know to help her. I am so glad that I found this website, by accident I must say, and hope that I can get some help. She has it in her face, arms, hands and legs. We now just found out there is scaring in her lungs and she needs to see a lung specialist. I want her to see a sclermoderma specialist but need advise on who is the best and where to go. Even who to stay away from if there are any of those. We live in Bethlehem Pa and I know there are some doctors. in Philly or is somewhere else better. Any recommendations on who she should see would be greatly appreciated. Also, would they also treart problems in the lungs or would a pulmonary dr. be better.

Her dr. here in Bethlehem wants her to try a medicine for transplant patients to see if it helps. I'm not sure of the name rght now its slipped my mind. Has anyone every heard of this? Any thoughts on meds for both the limps and lungs would help. Also, any other suggestions would also be appreciated. It's all so confusing right now

#2 jefa


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Posted 17 October 2008 - 03:58 AM

Hi, Barbara B. I'd like to welcome you and your family to the ISN Sclero Forums which I am sure will be a great help to you in the way of information and support. It can be overwhelming at first, so the first advice I have is relax a bit - worrying won't help anyone and stress can make every burden seem bigger. Here is our list of Scleroderma Specialists in the USA which may be useful but I am sure those in the area will give you more specific advice if they can. Is your mother's current doctor a rheumatologist? I look forward to getting to know you better.
Warm wishes,

Carrie Maddoux
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#3 Barbara B.

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Posted 17 October 2008 - 04:13 AM

Thank you for welcoming me. yes, my mom's dr. is a rheumatologist. She first started complaining about her hands being tight yearlier this year. A dr. had trouble starting an IV because her hands where too tight. At first her doctors. told her she had arthritis so we didn't worry too much. This summer we noticed her finger tips and she was having problems doing things with her fingers. By the end of summer when I touched her arms I knew something was much more serious. She has other medical problems and when she went to her endocrinologist he had placed a name to her problem by September. Round of dr visits, biopsy and other tests confirmed what we knew in our hearts. And here we are.

#4 Sheryl


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Posted 17 October 2008 - 06:40 AM

Barbara B. I also wish to welcome you to ISN forums. You will learn so much from this group of wonderful people. Sorry to hear that your mother has Scleroderma. Once you get over the shock of what is going on, then you can get down to business just taking care of each situation as they arrise. I hope you find a good scleroderma specialist. A rheumatologist whom specializes in scleroderma is the first choice to go with. Your mom will have a pulmonary doctor, and her endocrinologist that will also keep tabs on her health. Sometimes we are overwhelmed with the many doctors we need to continue seeing. A good gastroenterologist for your mom if she has bowel issues or esophagheal issues, such as Gerd. If we can offer relief or other helpful hints we will do our best. Keep us informed on your moms situation.
Strength and Warmth,

Sheryl Doom
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International Scleroderma Network (ISN)

#5 pieski


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Posted 17 October 2008 - 06:46 AM

Hi Barbara,
I am pretty new here, but I think the drug you are talking about is cellcept. My doctor wants to put me on it next month. I have lung involvement as well and did round of cyclophosphamide, which is not the drug of choice anymore. I also see a pulmonologist who keeps an eye on my pulmonary function. Has she had a CT scan to determine the lung involvement? Good luck to you and your mom.

~ Teresa~

#6 Cheryle


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Posted 17 October 2008 - 07:23 AM

I'm on a "kidney transplant" drug called Imuran. I've been on it for 2 years and it has helped to stabilize my lungs. I actually take the generic form called Azathioprine. If this is the drug the rheumatologist is talking about, feel free to ask me any questions, I'll be happy to try to help.

#7 Amanda Thorpe

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Posted 17 October 2008 - 08:23 AM

Hello Barbara

I am sorry your mother has this diagnosis, on the up side she has you and you have this site.

You have already been given great information and I would just like to echo getting a doctor competent in treating scleroderma is vital.

If the transplant medicine is Cellcept I have been on it for 12 months for diffuse SSc, no side effects and some improvements.

Please post as issues and concerns arise for you.

Take care.

Amanda Thorpe
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#8 Peggy


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Posted 17 October 2008 - 04:58 PM

I just wanted to send a warm welcome. I'm sure you are swimming in all that you have had to take in. It's quite a shock to learn that your Mom has this disease. The good news is that she has you to help her in all of this. There are so many different variations of this disease and everyone is different. The first thing that you are doing correctly is to find a doctor who knows sclero. Not all rheumatologists know what sclero is about so you have to ask if they are specialized in it. Once she sees them they will do a number of tests to see what kind of organ involvement there is if there is any. Once that is determined then they will decide what type of drug treatment to try. You have come to the right place to ask questions and to get support. Everyone here is great and its a wonderful place to go for questions or for just venting. When I first learned I had sclero I was so upset and it was so much to take in. I have horrific fatigue and that has really been hard to get used to. I used to work and because of this disease I'm no longer able to. I'm sure there are changes in store for your Mom and it's great that she has you to lean on. Please keep us posted on how she is doing.

Warm hugs,


#9 canon


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Posted 18 October 2008 - 05:56 PM

Hi Barbara,

Welcome and am sorry your mother has Scleroderma. People have given you some things to think about and as Jefa said it can be overwhelming at first. Can not help you with the medication question but wish your mother speedy results from the treatments you and all involved will use to treat her illness with.

Gentle thoughts,

A happy heart is good medicine.