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Newly Dx With Diffuse Scleroderma

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5 replies to this topic

#1 Marie W

Marie W

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Posted 29 November 2006 - 12:03 PM

I was diagnosis with systemic sclerosis a few weeks ago. I have been having severe symptons since June. It started out with a lot of pain, burning, and swelling of my toes. I also experienced a lot of pain in my hands as well as my other joints. I was having severe migraines also. I am doing better after several weeks of taking prednisone. I wondered if anyone else experiences migraines. I also wanted to know about meds, my Rheumologist told me Placqenil wouldn't help, but on the Mayo Clinic website it says it will. I am considering getting a second opinion. Any feedback would be appreciated

Marie W.


#2 Sweet


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Posted 29 November 2006 - 12:34 PM

Hi Marie,

I wanted to personally welcome you to the sclero forums, but I'm sure sorry it's because you are ill. You stated you have systemic sclerosis. Did you mean scleroderma?

I can understand your confusion about your symptoms, worries, and what to do in regards to medications. Plaquenil is truly a first line drug when it comes to treating scleroderma, so I'm unsure why your rheumatologist told you it wouldn't work. Please know howeve,r I am not a doctor and so of course he is better acquainted with your case. Getting a second opinion can be very helpful. I have been diagnosed for almost 7 years and I just recently decided to get a second opinion. Nothing wrong with that!

This forum is a great way to learn, not only from searching the site, but also from the experience of others. Post often and let us help you as much as possible. I want to give you a couple of links to get you started.


Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#3 Heidi


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Posted 29 November 2006 - 02:58 PM

Hi Marie,

Welcome to the Sclero Forums. I am glad you found us, but sorry it is because of your diagnosis. Sometimes we all get confused with the various terminology, but systemic sclerosis and scleroderma are one and the same.

You mentioned confusion about Plaquenil as well. I think there is some difference of opinion among rheumatologists concerning this drug. Another member wrote about this a few weeks ago and said her rheumatologist said that Plaquenil does not help the collagen build up, and thus, does not help with the skin thickening and tightening but it does act as a general anti-inflammatory and is used for those with Lupus and scleroderma for that purpose. I am not a doctor, however, and am just repeating what another had been told by their rheumatologist.

I see that Sweet gave you a couple of links. I hope you will take a look at that information and that it is helpful.

Again, welcome! I hope you will come and post often.

Warm wishes,

#4 kelowna52


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Posted 29 November 2006 - 04:30 PM

Hi Marie, I'm sorry your not feeling well. Welcome, I thought I would get into this discussion. I have been on Plaquenil for at least three years, it did help with the body pain in the beginning, but now I'm on other meds as well as Plaquenil. The Plaquenil wasn't working as well as it did in the beginning.

I also get really bad Migraines, and after my Hysterectomy they were worse. They finally found a med for me that works. It took two years and finally they sent me to a Pain Center in L.A. I was so gratefull to the Doctor that finally helped me. If you want to email me I could go over the meds with you, I'm taking. I find it interresting there's a few people on this site that have Migraines, I mentioned this to my rheumatologist and he said that Migraines were not a part of Scleroderma, it does make me wonder though. Good luck to you and keep in touch.

Jackie S.

#5 R'egene


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Posted 30 November 2006 - 11:27 AM

I have just started to get migraines or headaches everyday now. I don't know why. I get them everyday. I'm not working and try to keep my stress level down. I had a cat scan but it was negative. Have u asked your doctor about your headaches yet?

#6 janey


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Posted 30 November 2006 - 02:05 PM


Welcome to the forum Darling! I'm so sorry to hear about your recent diagnosis and symptoms. You have been given some good advice and links that I hope you review. There are lots of medications for various symptoms and then immunosuppresants that are used to try to slow down the progress of the disease as well as reduce some of the symptoms.

If you are not satisfied with your current doctor, then please do not hesitate to get a second opinion. If there is a scleroderma specialist in your area, I would highly recommend go to him or her. Here is our link to scleroderma experts. Hopefully you can find one near you.

I hope you find something that eases your pain. Please keep us informed and visit us often. We want to know how you are doing.

Big Hugs,

Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
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International Scleroderma Network (ISN)