Tymlos side effects

Posted by loh @loh, Jan 29, 2025

Has anyone else had leg/back aches with Tymlos? I've been on it since October and lately I've had terrible aches in my legs and lower back, especially at night. Is that one of the known side effects? Thanks!

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Profile picture for lightlifts @lightlifts

@njx58 I have gone up to 5 clicks from 4 and am feeling the weakness and dizziness again. 4 clicks seems to be the sweet spot for me. I will continue with the 5 to see if I can get acclimated.
I discussed all this with my MD and told him something has got to be better than nothing but won’t know until my dexa in August.

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

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Profile picture for robe1018 @robe1018

@dbamos1945 I went on tylemos. I think the prescription for 80 mg, the doctor didn’t want to decrease it. I lost instead of gaining on envenity, which is extremely weird since it was at least increase some. It is amazing after I went off both all the side effects went away. I have my normal pain but being on the meds I would have pain in areas I had broken bones. There was one day I couldn’t even walk on a foot that broke about 20 years ago. Tylemos is a different class than envenity. Good luck. I should have written down everything I felt - you might want to track your side effects.

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@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

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Profile picture for strongerbones @strongerbones

I’m first led an appeal about the TYMLOS with my insurance provider but I don’t want to go through being sick again. My endocrinologist prescribed Forteo as an alternative which is also a bone builder
And a daily injectable. She suggested I take a two week mental break and the start Forteo. I must have spend about 20 hours in phone calls,(including waiting I a ‘queu’ or filling out forms. I also filed a grievance and a complaint. I do that for me but for also all the people who are older, don’t have an advocate or limited English nor who other ways marginalized.
I read an article that only 1% of patients who are denied a medication appeal. I also wrote an article to the Seattle Tomes. It probably won’t get published but it was cathartic for me. I made an analogy to buying a winter jacket, recommended by my boss, for my outdoor job but the jacket had no price tag and I needed prior approval from the weatherman.

I will keep everyone informed on how I do with Forteo.

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@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.

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Profile picture for gently @gently

lightlifts how long were you on 4 clicks. 4 clicks is probably still building your bones. If your doctor could order P1NP and CTX serum labs, you'd get a better idea if the medication was helping before next dxa.

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@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!

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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.

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Profile picture for gently @gently

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.

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@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

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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.

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