Speaking of the Lotronex issue - I found an old post by Sally on another board, where she described her dilema, (I have no proof, of course, but I'm almost certain this was written by Sally):
Question
I was diagnosed in December of 1999 with collagenous colitis. After my GI specialist prescribed numerous medications none of which worked, she finally prescribed Lotronex "off label." I had wonderful results with this medication and no bad side-effects other than slight constipation at the beginning which was easily controlled by lowering the dosage. The seven months that I was on Lotronex were the best I had in 9 years. Do you have any idea when or if Lotronex might be re-released? Without it, my symptoms have returned and I am forced to take large doses of prednisone to control frequent and painful diarrhea. Any encouragement would be appreciated.
Answer
Hello Sally,
Sorry to hear you're one of the hundreds of thousands who now suffer from the withdrawal of Lotronex from the market.
I personally believe that Lotronex will be re-released. This is based on my first hand knowledge of the efforts being made to see that this happens. If you would like to join in those efforts, i.e., email and snail mail letter writing and phone calls, visit The Lotronex Action Group website http://www.lotronexactiongroup.org Also visit the discussion forum about Lotronex at http://www.ibsgroup.org/cgi-local/ubbcgi/Ultimate.cgi as well as Lotronex Central at www.geocities.com/lotronexcentral/ All of these sites can give you more support in coping with your condition and allowing you to feel there's someone who knows what you're talking about. There is also a petition online you can sign electronically (after reading it of course) and make comments if you wish. http://petitiononline.com/LOTRONEX/petition.html
Not everybody found relief with Lotronex but I'm glad you did. Hopefully when it's back on the market more Collagenous Colitis sufferers will be able to try it and more diarrhea predominant IBS sufferers will too.
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I too so remember the board posts between you and Sally and really all of us. Those were the days but we have landed here on a great site and you are fondly remembered. I was sending Christmas cards when I got the email about Sally and having to not send one already written and addressed to her but so very difficult to do. So I didn't. I have it in my cards and will go into a memory box. What a lady she was. I also kept in touch with her and miss her so.
Hang around here, everyone will definitely enjoy your company.
Love, Maggie
Maggie Scarpone
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Resident Birder - I live to bird and enjoy life!
Polly
Glad to know you all are moderating "the board." It continues to be a VERY civil place!!! Keep up the good work! Sally set the tone - and y'all are following in her footsteps. Hard to comprehend her passing!!
I did not know Sally, but I know what it feels like to have a stranger come into your life when you are feeling so sick and so weak and offer to be there for you during such an awful time. It is hard to find the type of kindness that I have found here from the potty people. So, for those who knew her, I am very sorry for your loss.
I did not know Sally, but I know what it feels like to have a stranger come into your life when you are feeling so sick and so weak and offer to be there for you during such an awful time. It is hard to find the type of kindness that I have found here from the potty people.
But how wonderful to be remembered for the work you did, and the difference you made in people's lives. And to be remembered for your spunk and resourcefulness, and most of all, graciousness. Words can't express how much it meant to me to get support and validation (and jokes) in dealing with MC.
I'm sure not many will remember me (except for Polly & Sally) It's Joyce who walks.
I have not been on this site for at least a year. Every so often I come on and check things out. When I saw this thread I couldn't believe what I read.
I'm so very grateful to Sally for starting this site. She was so kind and such a caring woman. When I needed to know that I wasn't the only one with this terrible disease and needed support she was there.
Sally thank you for all you have done for everyone and you will be missed very much by all.
Love,
Joyce
So nice to see a post from you - it has been way too long. I well remember you too and along with Polly, hope you are well and still walking. Sally was definitely a rock for us for many years.
Love, Maggie
Maggie Scarpone
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Resident Birder - I live to bird and enjoy life!
So well put! All best, Ant
