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Penicillimine And Road Trip!

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Hello everyone:

 

I have finally decided to to quit straddling the fence on this stem cell transplant issue. As I have previously posted, I was recommended by a Dr. from UPMC to undergo a stem cell transplant. However, they don't do them at UPMC. As such, I have decided to meet with and get an evaluation done by dr.'s involved in the protocol. Next month my wife and I will be traveling to Northwestern to meet with Dr. Burt as well as Duke, to meet with Dr. Shanahan to go through the first phase screening for the SCOT study. It has been such a difficult decision as to what to do, but I finally came to the conclusion that without meeting these people and being evaluated I will never be closer to an answer. So it is road trip time.

Also, my local dr. wants to start me on penicillimine. His office actually spoke with my wife today and I have not had an opportunity to question him about it. I have two concerns. One is I am allergic to penicillen. Is penicillen an ingredient of penicillimine? Secondly, what little research I have done indicates a potential side effect of the drug is inducement of Polymyositis, which I have already been diagnosed with. For those that have been on this drug, I would appreciate hearing about your experiences with it. Thanks in advance.

 

Dave in Florida

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Hi Dave,

You might want to read our page about how d-pen was proved to be of no use for scleroderma in a clinical trial a few years back --

Negative Clinical Trials for Scleroderma: Penicillamine

Until then, it was widely considered to be "the" treatment for scleroderma, so the results were quite disappointing for everyone.


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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Hi Dave:

 

I was put on d-pen after I was diagnosed in '97. I was on it for about 4-5 months and was taken off of it because the doctor's did not see an improvement, only progression. Like Shelley suggested, you might want to research up on it and ask more questions about it because I would hate for you to have false hope about it. Not to discourage you, but please ask questions.

 

Hope all goes well for you.

 

Michelle


Michelle C. Hunter

ISN Book P.R. Coordinator for the U.S.

International Scleroderma Network

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Guest Sherrill

Hi Dave,

 

When I was diagnosed in '97, my rheumatologist at the time offered me Penicillamine. I was unsure about it, and not having a computer then I phoned the drug company to ask about side effects etc. They were difficult, but when pressed they said they would send the details to my general practitioner and maybe he would tell me about it!

 

They did do this, and when I saw my general practitioner he gave me the many paged fax to read to make up my own mind about it, though he said that in his opinion it wouldn't be a good idea to try it.

 

After reading the fax I decided definitely NOT to take it! And as Shelley says it has not been proved to be useful for scleroderma.

 

So read all you can about it, if for no other reason than to be able to tell your general practitioner why you don't want to take it. Knowledge is power!

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Hi Dave I was put on Penicillamine by my Doctor who was trained by Medsger, several years ago and I think it did stop the progression even though all the research says no. This med is related to Penicillin but I'm not sure what the cross reactivity is. My doctor now no longer uses Pen. much. I think he's using Cellcept more. Shirl.

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Hi Dave,

I am really glad you have decided to investigate the stem cell option further. It must have been a really hard decidion to make but to be informed about options and treatments is the only way to go.

 

Please keep us posted! Good luck, wishing you the best!

 

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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