Updated Osteoporosis Med, a wanted side effect!
Hey RA Pals, I was DX with osteoporosis, fortunately they found early from Dexa. Mentioned awhile ago Rheumy wanted me on meds. Tried Boniva, failed due to gastrointestinal problems. Also am on LD Pred and will be for life since almost every other RA med is contraindicated and for me, LD Pred works great. But it is not good for bones. Anyway rheumy now put me on a bone builder—Tymlos. It’s a bit of a pain, daily injection, but we all know about just getting on with it. Well of all things the stuff makes me feel great! I did find some limited research saying it has some anti inflammatory pathways, and WOW, for me it really does! So I am getting the be benefit (hopefully) of bone building but also feeling good and energetic. Though most patient sites seem to be full of people who are having trouble, have found a few other autoimmune patients who have felt the same way as me. One person said it made them feel like their old self. Anyway just thought I would share. Now I have to be patient until next Dexa, though rheumy doing blood work in the meantime to see if I’m headed in the right direction. They only let you take it for 2 years. So will see. Cheers, C
Hi
. That is really interesting and thank you for sharing. Yes, there is very little research on Tymlos beyond the bone building aspect. That said, if it makes you feel better who's to argue with the results - you know your body. Please feel free to keep us posted on how things go. Best, Richard (Team Member) Thanks Richard. I want to emphasize I am not the only patient with an autoimmune disease(s) who has said the same thing—makes them feel great. Kinda bummed now they only let you take it for two years! Anyway wanted to post in case others are going though osteoporosis and confused over meds or just reading negative reviews. I think a lot of people who feel good or have few to no side effects don’t post! Also the RA and autoimmune communities in general are so used to worse symptoms and side effects, it’s like this is a walk in the park! Anyway hope this helps someone! Cheers
Hi
. I think you hit on something really interesting that people should keep in mind when they read about things like medical treatments online. People are much more likely to post the negative experiences. It is just human nature - when something works we feel this is the way it is supposed to be and then go out an enjoy the fact that we are feeling better. When something doesn't work or makes us feel worse we voice the opinion because we want things to be better. In many ways this is a good thing - it holds people or companies or products to account, but it certainly also makes it harder to get the positive. Thanks for your willingness to take the time to share the positive. Best, Richard (Team Member)
