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.

So what can we do after Tymlos if we don’t want infusions and cant take oral bisphosphanates and don’t want Prolia and not a HRT candidate?
😔

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Profile picture for lightlifts @lightlifts

So what can we do after Tymlos if we don’t want infusions and cant take oral bisphosphanates and don’t want Prolia and not a HRT candidate?
😔

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@lightlifts

May I ask why you are not a candidate for hrt?

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Profile picture for gently @gently

@lynnsusan, I don't think it is common. But I've been reading individual reports of success with Evenity after Tymlos. It does make sense.
I feel the same about those infusions. But if you do take Evenity following what would you take after. Evenity bone is probably more stable after Tymlos than after any of the other medications but Evenity bone is lost fairly quickly. It primarily lays down modeled bone. that it, it lays bone down without the cement line that tightens the new bone's hold to the surface. We can't get the cement line without osteoclasts. Without the cement line the cells that resorb bone have that whole line of access to the bone.

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@gently I would try Fosamax after the Evenity. Hopefully i can tolerate it. Thanks so much! I really do not want to do any infusions.. with bad sides effects I could be stuck for months with them.

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Profile picture for lightlifts @lightlifts

So what can we do after Tymlos if we don’t want infusions and cant take oral bisphosphanates and don’t want Prolia and not a HRT candidate?
😔

Jump to this post

@lightlifts

No guarantees that Bhrt/hrt would preserve the gains from tymlos (so many factors to consider) but why are you not a candidate?
You are saying no to reclast and Prolia. May I ask why?

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Profile picture for lynnsusan @lynnsusan

@gently I would try Fosamax after the Evenity. Hopefully i can tolerate it. Thanks so much! I really do not want to do any infusions.. with bad sides effects I could be stuck for months with them.

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@lynnsusan, Fosamax is a good choice, thought to be very effective after Evenity.

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Profile picture for gravity3 @gravity3

@lightlifts

No guarantees that Bhrt/hrt would preserve the gains from tymlos (so many factors to consider) but why are you not a candidate?
You are saying no to reclast and Prolia. May I ask why?

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@gravity3 MD says I am too far out of menopause 16 years out, it won’t preserve the bone as much as Reclast.

I have hypertension and high cholesterol. My grandfather passed at 60 of a massive coronary, I am almost 70.

I am afraid of getting the bad side effects that are long lasting from Reclast.
I have Hashimoto’s thyroiditis.

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Profile picture for gravity3 @gravity3

@lightlifts

No guarantees that Bhrt/hrt would preserve the gains from tymlos (so many factors to consider) but why are you not a candidate?
You are saying no to reclast and Prolia. May I ask why?

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@gravity3 Prolia is forever. I can’t do oralbisphosphanates due to hiatal hernia and bad reflux so nothing to follow up Prolia with other than Reclast which if it gives you a bad reaction you can’t get it out of your body.MD poo poos my concerns. He has only had 1 patient that had a severe reaction to Reclast. I don’t like to gamble much!

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Profile picture for gently @gently

@lynnsusan, Fosamax is a good choice, thought to be very effective after Evenity.

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@gently
and equally effective after tymlos? In case my insurance won’t cover Evenity. Many thanks!

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lynnsusan, maybe even more effective after Tymlos, considered highly effective. https://pubmed.ncbi.nlm.nih.gov/29800372/
I like the way you are planning this sequencing.

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Profile picture for lightlifts @lightlifts

So what can we do after Tymlos if we don’t want infusions and cant take oral bisphosphanates and don’t want Prolia and not a HRT candidate?
😔

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@lightlifts, I completely understand. The trouble is that you'll lose bone mineral content. Inside of two years you'll be about where you were when you started Tymlos. Your bone will still have more resilience. The bone that you keep will be good bone.
You might track the loss with bone markers.
Technically Evenity is a double injection not an infusion, and maybe not advisable for you. I don't know how much workability you'd have with the oral bisphosphonates, if you've tried a lower dose or a weekly dose, a very low dose with curcumin. https://pmc.ncbi.nlm.nih.gov/articles/PMC10839592/
You might consider Evista (raloxifene)

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