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Struggling with Tymlos medicine
Osteoporosis & Bone Health | Last Active: Apr 13 12:19pm | Replies (140)Comment receiving replies
@njx58 Thank you. Interesting that I just received a phone call from my Healthcare provider. She is not comfortable allowing me to continue with reduced doses Beyond a week or so. Evidently my specialty pharmacist called her and said it would be off label and it sounded like it spooked her. Not sure how this will play out, because it is highly likely I will not be able to tolerate a full dose for a while. I guess my body has a week to figure it out and be able to do so. My lowest t score was a -3.0 and I really want to be on an osteoblast. However with my other failed treatments, I will have to default to an osteoclast. Not good...yet. With my side effects, my provider is not optimistic that I will be able to stay on Tymlos.
Replies to "@njx58 Thank you. Interesting that I just received a phone call from my Healthcare provider. She..."
@cathyf31 What are your side effects on Tymlos and how long are you on it? Most people on this site have complained of initial side effects and most have found that they abate after a while. I had strong bone pain at night. My arms and legs ached. That lasted about 3 or 4 weeks, and then no noticeable side effects at all. As for going off-label, I've done it and not due to side effects but because of concern about the "standard dose of 80 mcg" being appropriate for everyone, whether you weigh 100 lbs or 200 lbs! I questioned the manufacturer, the specialty pharmacy that fills my medication, and my endocrinologist. I could not get any meaningful info but my doctor seems okay with it, and my P1NP after 4 months was at 98, a good number. I weigh 110 lbs and take 70 mcg or 7 clicks. I'll be getting a new DEXA scan in a month or so but it won't be of much help for me as my spine is very damaged from sports injuries and my hips were replaced in 2017 (marathon runner). My DEXA forearm score was -3.3. I took a REMs test and my lumbar spine was -3.3 back in February. Looking forward to the next REMs test at which point the Tymlos should have begun to build bone - it starts at 6-9 months. If no improvement I'll attribute that to my lower 70 mcg dose.
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@cathyf31 Honestly, just do what feels comfortable with the dose, and don't worry about what thery're telling you. You havs nothing to lose given that you can't tolerate the full dose.