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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!

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bharris202 | @bharris202 | Apr 30 5:39pm

Thanks. I looked…the generic is excluded as well.

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lbrown742 | @lbrown742 | May 1 9:04am
In reply to @bharris202 "Thanks for the reassurance. I did contact the insurance company today about the three drug options...." + (show)
Profile picture for bharris202 @bharris202

Thanks for the reassurance. I did contact the insurance company today about the three drug options. They only provide coverage (subject to deductible/coinsurance, etc.) for Tymlos. For me to get Forteo or Evenity, my doctor would have to submit a coverage exemption and the insurance can’t tell me what the cost of either of those would be. I’ll reach back out to them to see if they cover the teriparatide you mentioned. Thanks. Knowledge is power.

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@bharris202
I'm on month 5 of Tymlos. I started out slowly ramping up every few days until I got to the full dose. The only side effect I've had is an increased heartbeat for a little while. I've seen some articles that Tymlos works better on cortical bone than Forteo. I also travel a lot and like that it doesn't need to be refrigerated after first use. You may have only mild side effects, so give it a go. I've had great results so far a 297% increase in my P1NP.

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njx58 | @njx58 | May 1 9:09am
In reply to @bharris202 "Thanks. I looked…the generic is excluded as well." + (show)
Profile picture for bharris202 @bharris202

Thanks. I looked…the generic is excluded as well.

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@bharris202 If you are going to use Tymlos, definitely download that manufacturer discount card. It's free, there's no income requirement. You just give the information to the pharmacy, and they apply it each month when they renew your prescription. People on Medicare can't use this card, but that's not you.

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hdeff | @hdeff | May 1 9:17am

I was terrified to go on teriparatide after reading all the side effects, but I'm on my second month, and it hasn't been scary at all! I found fosamax much worse (yet still tolerable).

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hdeff | @hdeff | May 1 9:20am
In reply to @bharris202 "I’m 62…newly diagnosed with severe osteoporosis back score is -3.4 and hips are -2.8 and -2.9...." + (show)
Profile picture for bharris202 @bharris202

I’m 62…newly diagnosed with severe osteoporosis back score is -3.4 and hips are -2.8 and -2.9. I’m very active…hiking, biking, kayaking, yoga, Pilates and have great balance. I recognize the biking and kayaking don’t help the osteoporosis. Drug choices I’m being given are: Tymlos, Forteo or Evenity. They all sound ominous with the side effects, cost and self injection fear. I’m honestly terrified. Any insight on choosing a drug would be helpful. Insurance coverage will be minimal (deductible is $9k, they’ll pay 50% after that is met).

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@bharris202 contact the drug companies. Often they'll cover part of the cost.

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bharris202 | @bharris202 | May 1 9:48am
In reply to @lbrown742 "@bharris202 I'm on month 5 of Tymlos. I started out slowly ramping up every few days..." + (show)
Profile picture for lbrown742 @lbrown742

@bharris202
I'm on month 5 of Tymlos. I started out slowly ramping up every few days until I got to the full dose. The only side effect I've had is an increased heartbeat for a little while. I've seen some articles that Tymlos works better on cortical bone than Forteo. I also travel a lot and like that it doesn't need to be refrigerated after first use. You may have only mild side effects, so give it a go. I've had great results so far a 297% increase in my P1NP.

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@lbrown742 Thank you! I appreciate the insight from those who are further into this journey. You’ve introduced me to new terms (cortical and Pnp1). I’ve been looking online, but have a couple of books coming today. I’m glad you mentioned it doesn’t require refrigeration after first use. I’m planning to do some traveling this summer and was concerned about having keep ice and tote around a cooler with the injection pen in it.

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bharris202 | @bharris202 | May 1 9:51am
In reply to @hdeff "@bharris202 contact the drug companies. Often they'll cover part of the cost." + (show)
Profile picture for hdeff @hdeff

@bharris202 contact the drug companies. Often they'll cover part of the cost.

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@hdeff Thank you. I was looking at that online yesterday. My insurance company only uses one specialty pharmacy for Tymlos and I learned they have programs to reduce the cost as well. I appreciate the information!

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hdeff | @hdeff | May 1 10:43am
In reply to @bharris202 "@hdeff Thank you. I was looking at that online yesterday. My insurance company only uses one..." + (show)
Profile picture for bharris202 @bharris202

@hdeff Thank you. I was looking at that online yesterday. My insurance company only uses one specialty pharmacy for Tymlos and I learned they have programs to reduce the cost as well. I appreciate the information!

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@bharris202 that's fantastic! Good luck with your treatment!

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feebee1955 | @feebee1955 | May 2 6:56am

While I’ve had a litany of side effects that I’ve detailed before, my friend had zero side effects and a great outcome. You may be lucky, too, and be side-effect free! Only one way to find out, and you can always stop taking it if it’s bad,

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