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#1 afii



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Posted 08 February 2007 - 10:16 PM

Hello! I'm new in this forum and I wanted to ask you some questions.

I'm having scleroderma morphea since 9 years old (now I'm 17) and I'm going to the hospital every year. It looked very good since this December when I saw new circles on my ankle. So there's my question number 1 - will I have scleroderma and these hospital visits all my life?

Now my doctor said that now I must take methotrexate. I read somewhere than this can cause hair loss, is this true?

#2 LisaBulman


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Posted 09 February 2007 - 02:18 AM

Hi Afii,
Welcome to the Sclero Forums! With scleroderma you will find that some days are better than others. There have been years where I was in the hospital 3-4 times because of it and others where I haven't seen a hospital at all. It affects all of us very differently. Here is a link to our sclero.org website on morphea and methotrexate.

Please feel free to ask questions and keep posting!

Take care,

Lisa Bulman
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International Scleroderma Network (ISN)

#3 Heidi


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Posted 09 February 2007 - 03:46 AM

Hi Alfie,

Welcome to the forums! I am glad you have found us and joined in, but sorry it is because you have morphea and it is acting up again. As Lisa said, it is impossible to predict what this disease will do in any given individual. It does seem to burn itself out (and I think I have read something that said most cases of morphea get better after 5 years) in many individuals, but not in all (sounds like you might be falling in this latter category). It looks like Lisa gave you a great link to help with your questions concerning the methotrexate. I do hope you get some good results. Keep us posted.

Again, welcome!

#4 Margaret


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Posted 09 February 2007 - 01:28 PM

Hi Afii ,

Just wanted to welcome you to the forum. I am the Mom of an 18 years old son, Gareth, who is being worked up (extensively) for sine Scleroderma. His biggest problem right now is the esophageal dismotility, fatigue, and dysphonia....his voice goes out on him. He does not have any skin symptoms of Scleroderma.
Take care, Everyone.

#5 janey


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Posted 10 February 2007 - 01:17 PM

Hello Afii,
Welcome Darling. I'm sorry you are here due to the morphea but I think you'll find this a great place for support and information. As Lisa said, sclero is different for everyone so it's hard to predict if you have one hospital visit a year or none. I was on methotrexate for 3 years and yes, I did have hair loss, but the dosage that you'll be on will be very low so the loss will probably be slow and it does grow back. In truth I did lose enough to have to change my hair style but with the new hair style, the hair loss is only noticed by me.
I hope the MTX works for you. Please keep us up on how you are doing.
Big Hugs,
Janey Willis
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#6 Jordan's Mommy

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Posted 11 February 2007 - 07:02 AM

Hi Affi,

I am the mother of a 6 year old daughter with linear morphea/scleroderma. Her case is very mild, and only affects her left arm, and I hope this will be the extent of her illness. Her rheumatologist recommended methotrexate, but I wasn't convinced about it being the right course of treatment for her after reading about the side effects and speaking with my brother-in-law, who is a critical care pediatric surgeon. She is on Plaquenil and is responding well to it. I asked her again about methotrexate at our last visit in January, and she says they have lots of patients on it, and very few of them have the side effects associated with it. She says they frequently monitor children taking methotrexate to make sure it is doing more good than harm, and that the dose given is very small compared to the dose given to cancer patients. I think methotrexate is probably the drug of choice for scleroderma, but that decision has to be made on a case by case basis. I hope whatever your doctor decides helps make your life easier, and your illness more manageable.



#7 whirlway


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Posted 11 February 2007 - 09:10 PM

Hi Affi, good advice from the rest of the messages. No one knows how often and when you will be in the hospital. When I first became ill, it seemed like I was there every month. Now, 25 years later, there have been very few visits, only when I needs tests, etc. I did spend a few days there a couple of years ago, but not sclero related, had the flu.
As for the metho, there are other drugs out there. Some people can take it and not have the bad side-effects. As for myself, I took it about 6 months, and became so deathly ill I thought I was going to die. I was also trying to get off from taking a lot of prednisone also. I would talk to your dr and see if you could possibly take some other med. I took immuran for a while and it seemed to be doing a good job, then for some reason quit working quite so well. I now take 2000 mg of cellcept a day. You need to have good insurance for this stuff, due to the fact that it is about $700 a month.
Good luck!

#8 Sweet


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Posted 12 February 2007 - 07:24 AM

Hi Affi,

Just wanted to welcome you to the sclero forums. We're so glad you are here, but really sorry it's due to you being ill.

Looks like you've received some great links and information so far, so I just want to let you know I'm so glad you found us and we look forward to getting to know you more!
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#9 Susiebuilder



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Posted 18 February 2007 - 05:14 AM

Hi, I just saw your message. I have a 17-yr old son who was diagnosed with limited systemic scleroderma last spring. He had morphea on his chest, lower torso, and upper arms. He has been on methotrexate for about six months, and much of the morphea has disappeared, but not all.

He has had some bad side effects, dizziness, headaches, and I believe he gets sick more often (like colds). We took him to UCLA in November, and Dr. Daniel Furst said he could probably get the same good results with a lower dose, so we cut his dose in half, from one cc to .5 cc. He had had fewer side effects since then.

They want him to stay on the drug for at least two years, and then be retested for everything. There's a chance it will have gone into remission by that time. He has seen no progression since beginning medication, and has gotten much better range of motion with physical therapy and playing sports. He plays high school and club soccer and trains almost every day.