T--score change, next steps

Posted by janism @janism, Jun 24 11:39am

I am finishing my course of Tymlos and my progress is--

Lumbar spine T score -2.2, prev -3.2
Left total hip T score -2.8, pre -3.2
Right total hip T score -2.5, prev -2.8

I know that my nurse-practioner is going to recommend Reclast, and after reading about side effects I don't really want that. Experiences?

I'm looking for a magic wand and know there isn't any. Sigh.

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

No magic wand. 🙁

Your choices are likely Reclast or Fosamax. There are many threads here about Reclast experiences. Some people have had issues, and others haven't had any.

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I should have said that I can't do Fosamax--I started it before the Tymlos and I developed severe GERD so we discontinued.

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How long were you on Fosamax before your symptoms progressed. I am having Gerd issues after 7 mos. Bout I was taken off of Prolia because I had a rash and allergic reaction after my first year . Now I’m dealing with considering another or giving up.

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Profile picture for janism @janism

I should have said that I can't do Fosamax--I started it before the Tymlos and I developed severe GERD so we discontinued.

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There are people here who have described ways of getting the Reclast infusion to minimize side effects: pre-hydration, slower infusion rate, maybe even lower dose.

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Profile picture for hmbrglr @hmbrglr

How long were you on Fosamax before your symptoms progressed. I am having Gerd issues after 7 mos. Bout I was taken off of Prolia because I had a rash and allergic reaction after my first year . Now I’m dealing with considering another or giving up.

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I was on Fosamax very briefly. I had severe GERD and got off of it right away.

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@janism - For the best results, try to get Evenity after Tymlos. Evenity will move your hip to below -2.5 whereas Reclast will likely not be able to no matter how long you take it. Alternatively, you could move to Prolia, though I would REALLY try to get Evenity and hopefully be able to avoid Prolia.

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I was on Fosamax for 9 months when I developed severe acid reflux suddenly. I'm now on Reclast, had my first infusion 9/2024. Hydrated well before, during and after, took Tylenol after the infusion. Fortunately no side effects, maybe some tiredness that night and next day. Will have another in September.

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Profile picture for Michael Lavacot @michaellavacot

@janism - For the best results, try to get Evenity after Tymlos. Evenity will move your hip to below -2.5 whereas Reclast will likely not be able to no matter how long you take it. Alternatively, you could move to Prolia, though I would REALLY try to get Evenity and hopefully be able to avoid Prolia.

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My doctor suggested Evenity 5 years ago as a first drug - my worst score at the time was 2.5 - and the black box warning scared me. Despite doing Algaecal, walkng with a weighted vest, some weight lifting (but only 15-20 pounds at most, not the LIFTMOR amount) one score got worse Hip now 2.9 SPine got better but she didn't believe it, said it was probably due to a fracture . WHY? Maybe some of my efforts did something. ANyway what also heard about Evenity is you're a drug addict for life, that if you go off it without going on something else you give back your bones and more I still would like to do it naturally. HR T seems more natural than the osteo drugs.

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You had good improvement. Congratulations. But, you might consider a round of Evenity before going on an anti-resorptive as your scores for your hip are still not great. Once you start anti resorptives the bone density increases you can get from an anabolic decrease. BTW, why no femoral neck scores?

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Reclast, Fosamax, or Prolia are what is typically used. Fosamax works if you can tolerate taking it without GI reflux. I was on it for over five years without side effects.

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