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LisaBulman

Finally finished my study!

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I finally finished on Wednesday. It was a long 31 weeks with many appointments and tests. I have no idea if I had the placebo or the actual drug and I won't find out for quite some time. My center was the first to start the study and the drug company just told them to try to enroll another 5 patients. They have three signed so far. I am guessing the results won't be available for about a year.

Here is some info about the study if anyone is interested and might want to be a part:

Recruiting is taking place for a multi-center placebo controlled research study for pulmonary fibrosis with systemic sclerosis sponsored by Novartis Pharmaceuticals. Male and female patients, 18 to 65 years of age may be eligible for participation.

Interested patients can contact the Medical College of Wisconsin (414-456-7019), University of Houston (713-500-7118), UCLA (310-825-4744), Boston University (617-638-4344) or at John Hopkins University (410-550-8582) in Baltimore, Maryland. Novartis Pharmaceuticals.

 

Now my doctor is trying to recruit me for another one for digital ulcers. Much less time consuming. We'll see...

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Lisa,

THANKS for always being the guinea pig! I guess the big question is - how do you feel? Do you feel like you got the placebo? Have your tests results improved? I know you always do seem to get the placebo, so hopefully, luck went your way this time.

 

How are those ulcers doing? I know as cold as it is where you live and what you do every day that "taking it easy and staying warm" is not really an option. In any case, I do hope that aren't causing you too much grief and that you do get to join a trial ASAP - OR at least find something that works.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Lisa,

 

It is folks like you who do this great service and help the rest of us.

 

Thank you for your dedication to this cause and for giving up so much of your time to participate in this study.

 

We appreciate you and the giving you do.

 

Loving Hugs,

Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Lisa

 

I also thing it's a might great thing you are doing :) ....and that is an excellent question from Janey that I hope you also share with us. How do you really feel?


Sending good wishes your way!

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Hi Lisa ,

 

I just wanted to add that I am grateful for your bravery in being a guinea pig. I sure hope you got the med and that your lungs have improved.

 

Take care, Everyone.

Margaret

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Well, to tell the truth I really don't feel any different...unfortunately.

 

Here are the numbers to my pft's from the study:

 

date FVC FEV1 DLCO

3/08 2.65 2.31 12.3

4/08 2.73 2.37 11.7

4/08 2.85 2.42 11.8

5/08 2.77 2.46 11.5

6/08 2.71 2.45 11.5

7/08 2.99 2.58 11.4

9/08 2.80 2.39 9.9

11/08 2.88 2.46 12.3

 

Essentially they haven't changed much. Now I just need to wait for the results.....

 

Hugs,

Lisa

 

PS The nurse who takes care of the patients for the study did say that a few of the other patients stated they felt better. Fingers crossed they had the drug and it works!


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Lisa,

 

Thanks Lisa for being brave and being there. Wish you felt better though.

 

With gentle thoughts,

 

Judy


A happy heart is good medicine.

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Hi Lisa,

 

Thank you for helping to find a cure for scleroderma in so many ways -- by being an ISN Support Specialist and Assistant Manager on Sclero Forums, by being an ISN Assistant News Guide, by being an ISN Fundraiser with your fabulous series of Scoring for Scleroderma Soccer Tournaments...and by participating in so many clinical trials, on top of it all! That is really tackling scleroderma on every front!!

 

For those who missed it, there is still a chance to enroll in the trial Lisa just completed -- "My center was the first to start the study and the drug company just told them to try to enroll another 5 patients. They have three signed so far. I am guessing the results won't be available for about a year. Here is some info about the study if anyone is interested and might want to be a part: Recruiting is taking place for a multi-center placebo controlled research study for pulmonary fibrosis with systemic sclerosis sponsored by Novartis Pharmaceuticals. Male and female patients, 18 to 65 years of age may be eligible for participation. Interested patients can contact the Medical College of Wisconsin (414-456-7019), University of Houston (713-500-7118), UCLA (310-825-4744), Boston University (617-638-4344) or at John Hopkins University (410-550-8582) in Baltimore, Maryland. Novartis Pharmaceuticals."


Warm Hugs,

 

Shelley Ensz

Founder and President

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.

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