Anyone else being treated for Osteoporosis and Scoliosis?

Posted by maryanncascella @maryanncascella, Apr 30, 2023

Greetings: I just finished the 12 month course of Evenity without any serious problems. Other than occasional soreness at the injection sites on my arms, there were no side effects. My repeat Dexascan shows an increase of 10% which seems to be the average after undergoing the regime. I am now at a crossroads as far as where to go from here. Serious G.I. issues resulted in losing some of my colon, causing Mal-absorption now, so I'm reluctant to go with Reclast. The goal is to get my bones strong enough to hold up when the Neurosurgeon installs hardware in my lumbar spine. I've lost 4 inches of height and rib hump pain is a constant in my life. Right about now I feel like a 3 ring circus - Osteoporosis, Scoliosis and IBD. All of that said, is anyone here in the same boat?

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

Why would Reclast affect your gut? Just curious since I am about to start after Tymlos.

Do you have fractures? I have scoliosis but I believe it is from spinal fractures.

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@windyshores

Why would Reclast affect your gut? Just curious since I am about to start after Tymlos.

Do you have fractures? I have scoliosis but I believe it is from spinal fractures.

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Thanks to drugs.com, I have read about side effects that are a possibility with Reclast, along with information on who should not take it. Someone like me who has had a part of her intestines removed, resulting in malabsorption could have problems. My scoliosis is genetic and I've had it since adolescence. In 1989 I had spinal fusion surgery where hardware was implanted in my thoracic spine. At the time it was state of the art surgery. But the pressure of all that hardware on my lumbar spine has caused it to curve now. Some of my screws have popped out of place and are lodged somewhere in my back muscles 🙁 A few years ago I fractured my knee cap when I slipped on the ice, but other than that, fractures haven't been an issue. The goal for the last year has been to get my bone health to a point where the surgeon has something to work with since a year ago it would have been like him screwing into Swiss cheese. My Endo doc didn't even mention Tymlos as an option but the more I read about it, the more I think it could be a better option. When I tried Forteo 7 years ago, my hands and feet became swollen to the point where I had to go into the doctor's office bare foot and my fingers looked like sausages! After that experience I'm gun shy about medication that stays in your system with no antidotes. Like I said before - these days I feel like a 3 ring circus....

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I have sensitivities to meds. I even tried an immunologist to get on Forteo. When I tried Tymlos at full or even half dose, I had side effects that were not tolerable (I ended up in ICU with afib which may or may not be related). So I started at 2 out of 8 clicks and ramped up slowly and have done fine at 7 with excellent results.

I see nausea and vomiting as a side effect of Reclast. Where so you see malabsorption?

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The site here won't allow me to post a link, but it is discussed on drugs.com as a potential problem. I found it in the "who shouldn't take it" section.

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Hello @maryanncascella. I wanted to connect you with two members who have shared similar experiences, albeit in different discussions. I am going to post links to them below in the event they are helpful and also call in those members, @vickiekay and @notmoff, to see if they can come in and share more with you.

@vickiekay started this discussion and has both osteoporosis and scoliosis:
Chronic pain in every cell...: https://connect.mayoclinic.org/discussion/chronic-pain-in-every-cell/

@notmoff - How do you manage the effect of Kyphosis and Scoliosis?: https://connect.mayoclinic.org/discussion/kyphosisscoliosis-effects/

If you want to send me the link you weren't able to post, due to safety precautions we take for newer members, I can help you post that.

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@amandajro

Hello @maryanncascella. I wanted to connect you with two members who have shared similar experiences, albeit in different discussions. I am going to post links to them below in the event they are helpful and also call in those members, @vickiekay and @notmoff, to see if they can come in and share more with you.

@vickiekay started this discussion and has both osteoporosis and scoliosis:
Chronic pain in every cell...: https://connect.mayoclinic.org/discussion/chronic-pain-in-every-cell/

@notmoff - How do you manage the effect of Kyphosis and Scoliosis?: https://connect.mayoclinic.org/discussion/kyphosisscoliosis-effects/

If you want to send me the link you weren't able to post, due to safety precautions we take for newer members, I can help you post that.

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Thanks for the connections, Amanda. I'll see if I can find the link to drugs.com that discusses the side effects.

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