I am afraid of trying Tymlos and other drugs due to side effects

Posted by mkav2023 @mkav2023, May 7, 2023

How do others handle the fear of side effects, as well as the very real side effects, from Tymlos and other osteoporosis drugs?

I am 68, physically active, and feel fine with no fracture history. When I began developing osteopenia years ago, I was put on Fosomax and large amounts of calcium and D for about five years with no positive results, and sure enough, my osteopenia became osteoporosis.

My doctor now is recommending Tymlos due to my worsening Dexascan scores (worse T-score is -3.3 spine, and other T-scores are in -3.0 range). I have read a great deal (pro and con) about Tymlos and its side effects, and I know that even if Tymlos helps, after two years on Tymlos, then I have to go on another drug. I believe the odds are I will encounter a drug sooner or later with serious side effects that will drastically hurt my quality of life.

Any advice from those of you who have been on Tymlos and other drugs with side effects is greatly appreciated. Thank you!

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

Am following this important subject about OA and safest drug. Keep reading that a majority of people are also, very afraid of these drugs. A summary I read was written that 'while they help for a time' going forward there are none that keep helping. This is such a great website and keep reading with the hope that I will learn something else other than to be so terrified - as the OA I have has made my hands almost impossible to use or move as are all swollen and painful. Wait till noon for 2nd dose of Tylenol to lessen the symptoms. 5 pm even better but not like I am pain free. Even walking with a cane, hurts - handle so hard as well on the can. At the same time, need a hip replacement surgery. Can't have that when my upper body is under siege. Wishing all in the same boat, luck with this, have to keep hoping and finding answers.

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Profile picture for cindyward. Cynthia D Ward @cindyward

Am following this important subject about OA and safest drug. Keep reading that a majority of people are also, very afraid of these drugs. A summary I read was written that 'while they help for a time' going forward there are none that keep helping. This is such a great website and keep reading with the hope that I will learn something else other than to be so terrified - as the OA I have has made my hands almost impossible to use or move as are all swollen and painful. Wait till noon for 2nd dose of Tylenol to lessen the symptoms. 5 pm even better but not like I am pain free. Even walking with a cane, hurts - handle so hard as well on the can. At the same time, need a hip replacement surgery. Can't have that when my upper body is under siege. Wishing all in the same boat, luck with this, have to keep hoping and finding answers.

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I'd like to see the research that indicates most people are afraid of Osteoporosis meds. Please post. Thanks

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Profile picture for brendammc @brendammc

Thanks for such a thoughtful post. I’m at the which drug ?stage. Would you share did you do a plasty surgery of some kind? Compression fractures for me recently and had not been on any drugs yet. 77 years.

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Sent from my GalaxyOh no.....those fractures are painful.I did have Kyphoplasty surgery twice at 66yrs old. If you aren't familiar with it....quick outpatient surgery. Similar to a scissor jack that you would change a tire with.Non invasive, no scar.It is done under anesthesia and requires an MRI. My bones were soft. The surgeon said he could actually move them around. That's how quickly I crashed after stopping Prolia.I, and my doctor are pleasantly surprised at the success I have had with Tymlos.He says that is now his go to prescription for severe osteoporosis.I will say that the first injection was excrutiating but it only lasted a few minutes. Good hubby coaching me to take deep breaths and rubbing my back. I was petrified to take the next injection, but it never happened again. I think it was just a mega dose shock to my system?? The doctor said it happens, but not to everyone. Oddly, it seems like whenever my knees hurt or I recently broke a toe, the Tymlos seems to go right to the damaged bones....it's weird but suddenly my knee tingled and same with my toe....But you need to decide what's best for you. I get frustrated with doctors who tend to brush of my concerns or over-medicate....grrrrr. ASK QUESTIONS!! No matter how much of the doctors time you take, he should answer all your questions and address all your concerns. Make a list.Keep me posted how you are doing and what you decided to do.Take good care of yourself.

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Profile picture for laujodrik @laujodrik

First of all the first thing all bone density drs put you on is fosomax or actonel. They never start with such an aggressive drug unless your numbers are very high. I didn’t start anything until I had osteoporosis. I started with Actonol for 5 years and was fine for many years. Four years ago I was just over the line so I decided to go on Prolia - big mistake. I didn’t do any dental work and I’m still being tested. I’m praying it’s something else. I’m very active. I work out with a Dr of physical therapy twice a week. I have leg weights 2 pounds each and he has me walking around with them. I do a number of exercises with heavy weights as well. I pray it will work. I’d love to stay off everything. I’m also scared reading some of these articles of the women getting spinal fractures. I have a very good rheumatologist and I’m seeing her tomorrow. Later today I’ll have my results from the biopsy.

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Sorry for late reply. I have Mayo stuff go to this one email I don't access enough. And it's for my "important" stuff so usually I'm just looking for that when I come here, like a bank thing or whatever.

Funny a friend JUST told me his wife was on Actonel and I was surprised, she works out, lifts weights, I didn't think she had the problem. I didn't know Actonel but Googled and see it is like Fosamax Which is what my general doc said in last visit I should start with, that it's 'tried and true.' Plus my dentist said better with shorter half life, you can just stop it if you need work done.

My sister in law did start with Reclast because she said she didn't want to deal with the possible stomach issues of Fosamax. Those don't sound so great to me either.

But yet it was weird to suggest some one whose worst score was 1.9 go on Evenity.

This is what I want https://melioguide.com/osteoporosis-exercises/liftmor-osteoporosis-osteopenia/

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Profile picture for laujodrik @laujodrik

Glad to hear about your response to Tymlos. I’ve been off Prolia for almost 4 months and now being tested to Osteonecrosis. I’ll find out tomorrow. I had to wait to start Tymlos not to have a rebound. My rheumatologist feels Prolia should be mostly out of my system. Every day I wake up expecting to feel a fracture somewhere. I’m petrified of the meds and petrified to be on nothing. I seem to get side effects from most meds. I’ve never had any cancer treatments or dental work during Prolia and yet my mouth started to bother me and now I needed surgery for what they suspect is Osteonecrosis. My bone density was not terrible just in the osteoporosis level and I’m so sorry they convinced me to go on Prolia. My friends have been on it for years with no reaction. If I have osteonecrosis I can take 2 years of Tymlos and that’s it. No other meds if I have this condition. I’m 79 and very active though it seems not to help. I’ve bern working out and maybe that’s why I have postponed the inevitable so far. I hear 4 months is a long time to be off Prolia. My last shot was June. I guess I can’t worry about 2 years from now. I very healthy in all other ways. Between a rock and a hard place.

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That's the way I ALWAYS feel. Why I have done nothing so far like an ostrich (except work out but not with high enough weights apparently and also take supplements, sometimes Algae Cal, sometimes not. I want this thing.
https://pmc.ncbi.nlm.nih.gov/articles/PMC12035697/

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Profile picture for tkdesign @tkdesign

I feel for you. I have severe osteoporosis in my 50s with no found cause yet...I have tried all the bone building drugs and had awful side effects. I couldn't make it past a month. I think my body just has extreme immune responses to drugs overall. I'm so scared of fractures but no idea what to do.

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Are you post menopausal?

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Profile picture for gravity3 @gravity3

Are you post menopausal?

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yes, and started using HRT at 50

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Profile picture for sl303 @sl303

Sorry for late reply. I have Mayo stuff go to this one email I don't access enough. And it's for my "important" stuff so usually I'm just looking for that when I come here, like a bank thing or whatever.

Funny a friend JUST told me his wife was on Actonel and I was surprised, she works out, lifts weights, I didn't think she had the problem. I didn't know Actonel but Googled and see it is like Fosamax Which is what my general doc said in last visit I should start with, that it's 'tried and true.' Plus my dentist said better with shorter half life, you can just stop it if you need work done.

My sister in law did start with Reclast because she said she didn't want to deal with the possible stomach issues of Fosamax. Those don't sound so great to me either.

But yet it was weird to suggest some one whose worst score was 1.9 go on Evenity.

This is what I want https://melioguide.com/osteoporosis-exercises/liftmor-osteoporosis-osteopenia/

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I was already on Boniva, which is like fosomax for 5 years. I didn’t take anything for years. Now I’m back on Prolia. Osteoporosis is also considered a genetic disorder. My mom who swam, danced and worked out had osteoporosis as well. I’m in great shape, eat healthy and work out practically everyday doing something. My numbers aren’t that bad. They are all just below normal. I tried these machines and they didn’t do much for me. I never had to go on Tymlos. I was off the Prolia for 4 months and worked out like crazy and when I was able to go back on I did the same. I was always concerned about the rebound. I guess I got lucky or my core and hips were not as bad. I’m very thankful.

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I am on Tymlos . Started at 1/4 dose and slowly worked my way up to full dose over several weeks. No side effects.

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Profile picture for daisylou @daisylou

I am on Tymlos . Started at 1/4 dose and slowly worked my way up to full dose over several weeks. No side effects.

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Some people never reach the full dose because they can't tolerate it, so they max out at 5-6 clicks. It's still a therapeutic dose, if not as strong as the full dose.

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