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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 pieski

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Posted 10 October 2008 - 09:42 AM

Hi, my name is Teresa. I live in Phoenix, Az and was diagnosis with scleroderma in 2005. My lungs have been my biggest issue and I did cyclophosphamide for 9 months. I was stable, but have been on the decline recently. My doctors now want me to try cellcept. I have read that some of you are on it or have been. Would you mind sharing your experiences with it? Thanks.


~ Teresa~

#2 Amanda Thorpe

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Posted 10 October 2008 - 10:41 AM

Hello Teresa

Welcome to this forum and yes you're right there are lots of us on Cellcept, obviously me for one. :rolleyes:

I was diagnosed with diffuse SSc in 2007 and am into my 12th month of Cellcept. I am still unable to point out side effects and believe it has improved my condition. I don't have lung involvement so can't help with that but specifically my skin tightness has improved and most importantly I have not deteriorated.

Although it's a personal choice I would not hesitate to recommend Cellcept particularly as I am not riddled with side effects as far as I am aware. but realise that we can never be sure when we feel rough whether it's the drugs or the disease.

Hope this helps and look forward to future posts. :lol:

Amanda
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#3 lizzie

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Posted 10 October 2008 - 10:54 AM

Hi Theresa , welcome to the forum. I am on CellCept, but only started taking it a few weeks ago , so have limited experience of it. In my case I am taking it to try and prevent progression of skin thickening, I don't have any significant lung problems. I have felt fine since I started taking it. Other than slight looseness of bowels I have had nothing much in the way of side effects. Its too early to say whether it is actually working - I was told that it would be about 3 months before I saw any effects . There have been some concerns re the use of Cellcept - the FDA issued a warning earlier this year. I discussed this with my rheumatologist and he said that on current evidence he would be happy to take CellCept.
Lizzie

#4 janey

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Posted 10 October 2008 - 11:57 AM

Hey Teresa,
Welcome to the ISN Forums. We do have a page on Cellcept for Pulmonary Fibrosis. It lists a few studies in which cellcept has been found to be effective and well-tolerated. Just click on the link I provided.

I've been on cellcept for 1.5 years. My lungs have stablized and even improved a little. I've been at 3 g/ day most of that time and have tolerated it quite well. No side effects that I can tell. I hope you find something that works for you and I'm glad you have a doctor that is trying to address this problem quickly.

Big Hugs,
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#5 Sheryl

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Posted 10 October 2008 - 12:16 PM

Pieski, welcome to our world of information, hugs and well wishes. I don't have lung involvement severe enough to warrent any medications at this time, I just wanted to welcome you to ISN forums. I hope you make many friends here. Do some browsing and ask away anything that we can answer we will give it our best shot. Sometimes our own experiences help out greatly.
Strength and Warmth,
Sheryl

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#6 pieski

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Posted 10 October 2008 - 04:24 PM

Thank you all for the wonderful welcome. I look forward to getting to know you all.
~ Teresa~

#7 canon

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Posted 10 October 2008 - 04:42 PM

Hi pieski,

Like Sheryl I do not take cellcept but wanted to say hello and it is nice to meet you. Welcome.

Judy
A happy heart is good medicine.

#8 Nina

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Posted 10 October 2008 - 06:18 PM

Hi Pieski ~ I'm a little late, but just wanted to welcome you to the ISN forums.
I'm sure you will feel right at home in no time at all.
There is always someone here that you can talk with no matter what time of the day or night.
Wonderful people, lots of valuable information and tons of understanding.
Much love,
Nina (DE)

#9 barefut

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Posted 10 October 2008 - 06:53 PM

Welcome pieski ~

I was diagnosed with dffuse sclero in Jan 2006 and have been on 2mg Cellcept for 2 1/2 years with improvement in my skin and stabilization of my lungs. I have tolerated Cellcept very well.

Glad you have found the Forums. Looking forward to hearing more from you.

#10 Sweet

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Posted 11 October 2008 - 07:46 AM

Hi Pieski!

Welcome to the Sclero Forums! I'm so very happy you've joined us!

I don't have any experience with lung involvement and it looks like you've received some great advice, so I will just welcome you.
Warm and gentle hugs,

Pamela
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