Tymlos side effects

@lightlifts thank you and yes, please keep an update on how your Dexa is with a lower dose

@robe1018 yes, today my knee that I injured in 2019 now hurts and I can barely walk. My neck and head that I injured in 2017 now hurts all day until 3 hours before the next shot. I just don’t want to feel like this for 2 years

@strongerbones I appealed after insurance denied me for Tymlos. My doctor's office has a team that handles appeals. I was fortunate and the appeal was approved. Of course, I have a severe gastric condition that supported my appeal.

@gently I have been mostly on 4 clicks for about 5 months. They are telling me to stop and go on Prolia which I don’t want to do because I’ve read it depresses your T scores.( immunity).
I have Hashimotos and don’t want another autoimmune disease although I’m not sure depressing your T score will do that. My mom had severe juvenile RA, my sister just got RA @ 65yo and my mom developed leukemia from methotrexate which also depresses T cells and she ultimately passed in less than 4 months from that, so I’m unsure of my next steps. I think I will try to stay on it at 4 clicks. TY for caring!

lightlifts,
I'd (secretly) stay on 4 clicks and keep the pen in the refrigerator.
I'm also avoiding Prolia. It raises the T score increasing bone density, the T representing a statistical test that compares your spine to a set score. that but lowers your immunity, depressing pathway responsible for the development and of immune cells. The risk with Prolia is even higher if a person is already on immunosuppressants. Prolia can cause immunogenicity in some and immune flares in those with existing disease.
You might want to watch for is hypercalcemia even on low dose Tymlos,
And at some comfortable point you might try 5 clicks and back down if it causes discomfort
It cuts the cost of Tymlos in half, anyway.

@gently do you think keeping pen in refrigerator will enable use after 30 days? I asked the MD and they said NO.
Excuse me if I’m not remembering correctly, are you on Tymlos?
If you are on it what plans do you have for follow up drug?
I cant take fosamax( GI) don’t want Prolia….so then there’s Reclast…
Thx so much for caring and commenting, means so much to me

lightlifts,
the endocrinologist I see tells me that refrigeration will keep Tymlos potent for an extended period of time. He also tells me that with both Tymlos and Forteo it is changing the needle that disturbs the protein in these two medications, with the suggestion that a patient might obtain more potency by changing the needle every few days.
I never argue with him, but sometimes silently disagree, even though he is really smart and stays abreast of every thing osteoporosis related. He has a single disease practice--osteoporosis only.
I don't like the bisphosphonates, really don't like Prolia, don't trust Evenity, as yet. I would take Tymlos, but am overly happy with Forteo. I'll finish my third year on Forteo in April and this good doctor says I can stay on Forteo until my dexa T score is -1, which I think means until I die. He didn't want to say die. Very thoughtful
I feel rewarded by questions that make me think through everything I've read, I've been looking at osteoporosis for a very long time (decades). While pub med is my endless streaming binge, I don't have any medical credentials (crediability). I'm hoping Tymlos works for you, but joining me on Forteo is an excellent option.

Good morning support group; after serious considerations, I decided to start the TYMLOS this past Jan; my side effects are typically those listed as such: palpitations, weakness and muscle pain in my legs although they are sporadically, I went out of the country and it was difficult to be consistent with the daily shots because of the time difference and honestly, who wants to be pinching oneself every day when you are having so much fun in a foreign country! Bottom line, I can’t seem to get used to this treatment and honestly can say; I dislike it very much! Just wanted to commensurate, thank you for reading…

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.