relapsing polychondritis

[SJJ]

hey there everyone! I know there is one story in the ‘stories’ section about a successful use of AP for RP but I was wondering if anyone else out there has tried it and been successful? If you have can you kinda give me an idea of what dosage and scedule etc. you used? I also read that someone found out Dr. T used it on a patient successfully but I can’t seem to find the article or study. Any help would be greatly appreciated!
thanks

[SJJ]

anybody……..or know of the study that shows Dr. Trentham treating someone who had RP with AP (heard there was a study)…..or how to get in touch with the person who posted her story about it in the stories section? thanks

[marypart]

My son had severe costochondritis. You might find his story useful. I wrote this two years ago, and he is still in a complete remission. He will be graduating with a BSN in Nursing in June.

https://www.roadback.org/forums/topic/my-sons-story

[PhilC]

Hi SJJ,

Have you seen this page?:
MAGIC syndrome (Behcet’s, relapsing polychondritis)

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[SJJ]

yes I did, thank you PhilC. I was just hoping for more stories. It’s almost impossible to find an AP doctor in Canada as it is but even more so to find one who will take a chance on a more rare condition. I was hoping someone had more experience with this or could point me in the direction of that person’s ( in the stories section) physician etc. More evidence might convince my GP or the doctor from the story might be willing to take a chance on someone else as well.

[Author]

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