Poll: Crohn's disease patients that years later end up on Tymlos.

Posted by charvo @charvo, Jun 28 11:50am

Can I start an unofficial poll to get some clarity on a suspicion of mine as to how I ended up with undiagnosed osteoporosis until it was so late that the doctor went straight to Tymlos. If you would please, just use the "Thumbs Up" (Like) to signal if you followed this same path to a Tymlos or similar treatment. If you care to elucidate, I will reply too with more details about my rather short Crohn's history and whether or not lifelong anemia might have been the secret path to both.
Thank you.

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charvo, I wanted to like your post without pretending to be on Tymlos. but I would like more details of your Crohn's history, anemia, and your theories about secret paths.
https://pmc.ncbi.nlm.nih.gov/articles/PMC8772394/

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charvo, I wanted to like your post without pretending to be on Tymlos. but I would like more details of your Crohn's history, anemia, and your theories about secret paths.
https://pmc.ncbi.nlm.nih.gov/articles/PMC8772394/

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@gently Ok, so that's some heavy reading, but I got the gist: They should have given me a DEXA a long time ago, not my first ever two months ago. I had only one bad Crohn's flair up, in 2011 (all dates are approximate) that was rectified in under two years, steroids, suppositories, etc and Asacol and something else before that daily, I don't remember. I did become completely lactose intolerant at the same time. But I eat what I want and take Lactojoy with everything I eat. I will have gas and bloating with excessive ice cream or cheese, so I avoid depending on the social schedule, even taking 2-3 Lactojoys. In 2004 I broke my leg in five places and at the time, the ortho surgeon said my bones were fine. I have been banking on that, so never pushed the idea of possible osteoporosis, and I never knew that because of the CD, I should have been concerned. I have been taking good quality probiotics since well before that, but ever since the CD diagnosis, Visbiome as needed at least one a day. Last colonoscopy 1 ½ yrs ago, showed no signs of previous CD or the lesions that were inflamed back at that time. Iron anemia was diagnosed when I was maybe 5yrs old(?). Taken daily iron in multi supplement. I came to my theory without this critical piece of the puzzle that you linked me, on my own because the only thing that made sense was malabsorption. But I was thinking it was the anemia, until in the last couple weeks as I read more about my newly discovered deteriorating spine, I started to consider that maybe it was the only remaining symptom from the one and only Crohn's flair up in my life. We good?

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charvo, I'll say you're good--figuring out all this on your own. I'll be interested in the responses you elicit. Thanks for the history of details that led you to this theory.
Tymlos is the best. You might look at testosterone as adjutant therapy.
So sorry about those compression fractures, and the leg-- five places. Oh, my.
Bless those bones.

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Profile picture for gently @gently

charvo, I'll say you're good--figuring out all this on your own. I'll be interested in the responses you elicit. Thanks for the history of details that led you to this theory.
Tymlos is the best. You might look at testosterone as adjutant therapy.
So sorry about those compression fractures, and the leg-- five places. Oh, my.
Bless those bones.

Jump to this post

@gently Thank you, Gently. Yes, walking the dog can be a dangerous sport up north in the winter time.
Testosterone was fine according to the test, but you couldn't prove it by me.
Keep growing them bones!

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