TYMLOS

My endocrinologist at first recommended Reclast which I refused and now Tymlos which I’m still extremely concerned about. I have rheumatoid arthritis and have read nothing but horrible side effects from these medications. I cannot take the oral ones due to GERD. I don’t want to take any of them. I’ve no history of fractures and I am terrified of the long lasting side effects of pain and problems on top of my RA problems. I don’t know what to do. Anyone else choose not to take osteoporosis drugs and regret it later?

@mwendt54 Hello, I have two friends who have finished with the 2 year TYMLOS course and saw their scores increased which they tell me made it worthwhile in spite of the fear and discomfort in the beginning, I truly want to feel that way even though I am afraid and so uncomfortable when I take it, one of my friends had only one fall that broke her hip which was the point that helped her make up her mind about taking the treatment. I feel it is worth the try because a broken bone is not an alternative at all, oh but a what price! Sending you a big hug.

I started Tymlos back in January after a lot of back-and-forth with myself and honestly I relate so much to what you’re saying because while I know it’s supposed to help long-term bone health, the day-to-day reality has been rough with those random palpitations that make you pause and wonder if something’s wrong, that weird leg weakness and muscle pain that comes and goes just enough to be annoying but not predictable, and on top of that trying to stay consistent with a daily injection schedule while traveling (especially across time zones) feels almost unrealistic like you’re supposed to be enjoying your trip but instead you’re thinking about when to stab yourself and whether you’ll feel off afterward and it kind of builds this quiet resentment toward the whole process where even if you understand the benefits, you still end up thinking “I really don’t like doing this every single day,” so yeah, just wanted to say you’re definitely not alone in feeling that mix of frustration, inconsistency, and just plain dislike for the treatment even when you’re trying your best to stick with it.

@gracemove Hello! Thank you so very much for your words and encouragement, you speak precisely of everything I am feeling and going through, it helps me to not feel so alone in this endeavor! I thank you from the bottom of my heart! Sending you a big hug

@ccduplass
Thank you for responding. I’m really terrified about these drugs especially due to the fact I have rheumatoid arthritis and from what I’ve read from others with RA they’ve experienced excruciating pain in addition to other undesirable side effects. I’m also concerned about if I were to have to have any dental extractions etc while taking this medication as it can cause necrosis of the jaw. I’m not even sure Medicare would cover the medication. It’s all so confusing. I don’t want to break any bones obviously, but at what cost (not cost of medication) but cost to health due to side effects. Both my endocrinologist and my rheumatologist just seem to push the drugs and discount and minimize the risks. I also had a heart attack in 2023 and had 5 stents placed. Too much to try to figure what’s safe and best. Thanks again for your comment.

@mwendt54

I think that you may get more response if you post this under Osteoporosis.

@gravity3

Thank you, I will.