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Dercum’s Disease: Looking to connect with others

Chronic Pain | Last Active: Feb 5 2:44pm | Replies (145)

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@c3p0

You sound right to me. I have pain all over. In the abdomen, back, neck. shoulders, hips. Sometimes in odd places where there are lipomas. It is constantly moving from place to place. Have you been diagnosed yet? I would tell you to search for CBL-514 clinical trial. It is the only open, recruiting trial. You'd need a diagnosis to get in the trial. I suggest that because trials for Dercums are very rare. Caliway pharmaceuticals is the sponsor and the trial is in St. Louis, Mo. They have had a lot of success with the previous trials, so much that they were given a fast track by the FDA. All of the other symptoms you mention go along with it for me also. Here's a link to the trial. I was too old so I got removed. I was so excited until my personal interview where they told me I was denied. I hope you can get in on it. Good luck.
https://clinicaltrials.gov/study/NCT06303570?cond=Dercum%27s%20disease&term=adiposis%20dolorosa&intr=cbl-514&rank=2

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Replies to "You sound right to me. I have pain all over. In the abdomen, back, neck. shoulders,..."

Thank you for the info and the link, c3p0. I have a new primary care doctor and when I see her in a week I will try to get her to look into a Dercum's diagnosis, but I'm betting she's never heard of it and it will be difficult for me to get her to consider it. I'm speaking from experience with chronic fatigue syndrome. I read that it is a diagnosis of exclusion - how did you get diagnosed? Another question: I am 70, so do you think they will consider me too old for the clinical trial too? I will check out the link you sent, and thank you again.

Yep, I'm too old for the study. Dang!