LisaBulman

Joined another study!

12 posts in this topic

I did it! I joined another study. This one is for the treatment of digital ulcers. It is only about 41 days, compared to my last one that was 35 weeks.

 

I will have two-12 hour days at the hospital and a few other visits. Hope this one works!!!

 

CLinical Trials

 

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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Well done, you!! On behalf of all of us who stand to benefit from your generosity (and joining studies is generous), thanks.

 

I hope it works really well for you. Was the other study also for the treatment of digital ulcers?


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Lisa,

First of all I'm sorry to hear that you are STILL battling those stubborn ulcers. I would say it seems that you have tried everything, but I guess there is a least one more thing out there to try. I, too, hope this one works.

 

As always, THANK YOU for being a guinea pig!

 

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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Thanks!!

Jeannie,

The last study was for ILD. I, of course, had the placebo. It's not exactly official because the study is still ongoing, but from my center there were 3 people who had an improvement in their PFT's and one did not. I was the one that did not. Now we know that there may be another treatment available soon!

 

Oh yeah, when I'm done with this study, they will be starting another one for ILD, I believe. My doctor has already slated me for it. They are going to have their site visit soon so it should be ready to go by the fall. :)

 

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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Hi Lisa,

 

I'm very excited to hear that you are participating in another clinical trial! Is this a blind study or an open label one? In other words, are you going to probably do another rousing round of placebos?

 

If you get a placebo again, you just know we are going to endlessly rib you about being addicted to them! :lol:


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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Indeed, I do love those placebos!!

 

I am supposed to actually get the drug!! YOOHOO!!

 

When I go in for my 12 hr visits, I'll take a low dose of the meds, lay around for a while, have my blood drawn, take a little more, lay around, have my blood drawn etc... They want to see how quickly it is being absorbed and how I feel as the dose increases. Plus I'll get a little cash for it too! :)

 

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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Hi Lisa,

 

I love the part about how you'll be forced to just lay around for 12 hours. We've been angling for years trying to figure out a way to get you to do just that. And they'll ask how you feel, on top of it all?!

 

I'll bet you'll feel like a million bucks, finally being paid to relax. This study couldn't have possibly happened to a nicer or more deserving person, nor to one in more need of some quality rest, either.

 

So are you going to do this before or after the major fundraising soccer tournament that you're putting on for us, eh?


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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Good Luck Lisa!!! Sure hope it does you some good this time...and others too of course!


Sending good wishes your way!

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Lisa I am doing a study too, for PAH and scleroderma. It's DETECT. I have pulmonary hypertension (PH) and took my pulmonary function test (PFT) a month ago but now I have to have another one. They are seeing if they can DETECT if I would get pulmonary arterial hypertension (PAH). Its a 3 year test. I go have another PFT done on the first. They are also doing the digital ulcer one as well. so if anyone is interested let me know I can get the details for you. It is in Toledo Ohio.


Sam

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Hi Sam,

 

I'm glad you are in some clinical trials, too. Here is the link for the DETECT clinical trial:

http://www.sclero.org/scleroderma/treatments/c...o-z.html#detect


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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Sam,

That's great that you are in a study!! Hopefully you will have great results!

 

Shelley,

Thank you for your kind words!! As a matter of fact, I'm just waiting for my schedule so I'll be doing this in the middle of planning the tournament!!! :) Those 12 hour days will be greatly needed I'm sure.

 

As a side note, I have already received donations for my raffle! :)

 

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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