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New drugs?

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7 replies to this topic

#1 Dawnv



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Posted 19 May 2011 - 07:14 AM

Hi, Have just found this site and would be interested to know of any drug breakthroughs recently..in the last ten years etc. I was diagnosed with systemic sclerosing scleroderma about 17 years ago and up until now have been doing well. At present things are starting to fall apart a bit...but then again that could just be old age..I am 65.
I look forward to any replies.

#2 Shelley Ensz

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Posted 19 May 2011 - 07:56 AM

Hi Dawn,

Welcome to Sclero Forums! I'm glad you found us. I'm sorry you have systemic scleroderma and send my best wishes to you.

We have tons of information on treatments. There have been many breakthroughs in treatments for symptoms of scleroderma, especially. You might want to begin by looking up each of your symptoms on our main Systemic Scleroderma Symptoms page on our main site.

They haven't made much headway as far as an overall treatment for the disease; it is still primarily based on treating symptoms, for the most part.
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.

#3 Sweet


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Posted 19 May 2011 - 10:15 AM

Hi Dawn!
Welcome to the Sclero Forums. I'm really glad you've joined us. Shelley gave you an excellent link, I hope it's helpful. What therapies have you been on thus far?

Warm and gentle hugs,

ISN Support Specialist
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#4 debonair susie

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Posted 19 May 2011 - 12:35 PM

Welcome, Dawn...

I am SO happy you have joined our Sclero Forums also, where I am sure you will find comfort, support and probable answers to your health concerns/issues.

My Sclero Trek began in 1991, when my symptoms first started. Although it was a long 4 years before I was diagnosed, I feel comfident the treatments I have received (to date) have served me well.

During this period of time, I've received more diagnoses to add to my growing list of chronic illnesses.
I feel very fortunate that I've had excellent doctors/care along the way, who have been quite diligent.

However, it was a few years after my initial diagnosis before I had internet service, which made it virtually impossible for me to get the emotional support of others. Once I came upon the ISN site here, I have STAYED, thankful for the friends I have made and support I have found, as a result :emoticons-group-hug:

So, I hope you post often, now that you have found all of us :emoticons-yes:
Special Hugs,

Susie Kraft
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International Scleroderma Network (ISN)

#5 Joelf


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Posted 19 May 2011 - 02:15 PM

Hi Dawn,

A warm welcome to these forums!

Firstly congratulations on dealing with Scleroderma for the last 17 years; I've only been a member of this club for the last 22 months. :P

I'm sorry you're feeling that your health is deteriorating; I'm not in the first flush of youth either, so can empathise with you! ;) Like Susie, I've also received excellent treatment and thankfully my symptoms have stablised for the present.

As you've been a sufferer for quite a length of time, I'm assuming you're being treated by a rheumatologist who is a Scleroderma specialist. Perhaps as you're not feeling well at the moment it would be worth making an appointment with your rheumatologist (if you haven't already done so) to see if there is anything he/she could suggest to help you.

I'm very pleased that you've found our forums and joined our community and am looking forward to reading your posts and getting to know you. :emoticons-group-hug:

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#6 Amanda Thorpe

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Posted 19 May 2011 - 02:40 PM

Hello Dawn

Welcome to the forums, alas there is still no wonder drug for scleroderma but there are better treatments for the symptoms. You've already been given lots of great links so I'll just welcome you!

Take care and keep posting.
Amanda Thorpe
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#7 susieq40


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Posted 24 May 2011 - 07:43 PM


Welcome, sorry I haven't posted until now. Glad you are here. Best
place for finding info, and support from those that know exactly what you
are going through!! Hope you find the info you need. Again, Welcome to our
little peace on earth! HUGS HUGS

#8 janey


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Posted 24 May 2011 - 08:07 PM

Welcome to the sclero forums. I'm so glad to hear that you have been doing well for 17 years! Some significant things have happen with systemic scleroderma over that time as you may know. There are new drugs being used and even more being tested. A couple of sections you could explore are the ISN medications for scleroderma pages and the clinical trials for scleroderma pages. A few new immunosuppressants are being used and there are new symptoms specific drugs. For example, there are a lot more effective ways to treat Raynaud's than 17 years ago.

I hope that you continue to do well and never have to worry about taking any of these drugs. I've only had scleroderma for about 8 years and I can't even count any more how many drugs I've been on. Some were effective and well handled, but then a couple of others, specifically immunosuppressants, were just more than I could handle. I'm now on Cellcept which I have handled quite well, so well in fact that my rheumatologist has slowly been reducing my dosage.

Glad to have you join use Dawn. Your 17 years experience with sclero should be quite helpful to many of us.
Janey Willis
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