Anyone switch from Teriparatide to Tymlos because of side effects?
I have been on Teriparatide for 4-1/2 months now. I am someone who is extremely sensitive to all medications. The first nine days of my injections I was pretty much incapacitated. After that things improved somewhat, but my side effects are still pretty bad. Reading others comments here on this forum gave me hope that in six weeks to two months, perhaps I would adjust to the medication and feel better. After 4-1/2 months no further improvement.
I have nausea about 22 hours a day, stomach pain, constant belching, some dizziness, and just generally feeling lousy. I do have occasional bone pain, but that I can tolerate as it comes and goes quickly. I also am experiencing brain fog which is worrisome.
I am 65 years old, and never been on hormone replacement as my PCP refused when I asked for it. If I knew then what I know now I now, I would have found another doctor to help me but that ship has sailed. My spine as is at -4, my hips are -3.8. I have celiac disease and have been gluten free 18 years. I did take prednisone for about 8 years in my late 20s. So I know why I am in this predicament along with genetics. I weigh 110 pounds and am 5 foot 3 inches tall. I have exercised all my life, and as others have noted that hasn’t helped much.
I am currently seeing a rheumatologist, as that is the only person within a two hour radius, who would take me on. There were two good endocrinologist, nearby, but one retired, and the other one moved out of state. I have an appointment with another endocrinologist 1.5 hours away, but they gave me an appointment one year out as they’re booked solid. In four months I will be going to that appointment. I’m grateful for the rheumatologist that took me on and at least got me started on some medication’s.
I am wondering if anyone experienced these sorts of side effects from Teriparatide and switched over to tymlos and actually did better. I am aware of the clicks on that pen.
I’ve had so many problems with the specialty pharmacy getting my Teriparatide (late shipments, cancelled refills, etc.) that I am hesitant to ask my doctor to give the Tymlos a try, as I’m sure it is going to be an absolute nightmare with the specialty pharmacy. They currently do not cover Tymlos but I’m sure if my doctor made a case and appealed that decision, it might go through. But then my concern is if I’m even worse on Tymlos, I can’t imagine trying to switch back to Teriparatide with this pharmacy situation.
I really do not want to switch to Evenity and my doctor hasn’t even brought up Evenity. I am absolutely terrified of having reclast later on, because I am concerned I am going to have horrific side effects as every medication I take makes me sick.
I am going to continue on this anabolic medication regardless of how bad I feel because I don’t see any way out of this mess without building back some bone. I had blood work done a few weeks ago and my calcium level is in normal levels, so I do not think that is what is causing me to be so nauseated. I ordered my own CTX and P1NP and the last blood test shows the drug is working.
I have an appointment in April to see a doctor about hormone replacement, but I’m extremely concerned about that. I am 15 years past menopause. But I think it warrants investigation at least.
So has anyone had less side effects on Tymlos after switching from Teriparatide?
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Samantha88, I know of one person from Connect, windyshores. who could not tolerate Forteo, but tolerated Tymlos by starting a low dose and gradually reaching 7 clicks. She wasn't able to tolerate the full dose of Tymlos.
She also got her doctors to approve a 1mg dose of Reclast instead of the 5 mg to see how she would react to it.
There was a study of teriparatide every other day. It took four years though to reach the equivalent of 2 years of everyday use. Teriparatide can slow upper gastric motility.
Having nausea that many hours of the day seems impossible to bear.
I wonder if your rheumatologist might be able to secure a sample Tymlos pen. So you could trial it before disturbing your prescription setup. You deserve some luck
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2 Reactions@gently
Thank you @gently for your thoughts. I wonder what @windyshores symptoms were. I like your suggestion of seeing if my doctor can provide a Tymlos sample. Not sure if they would be willing to do that but it’s worth an ask!
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1 ReactionI discovered Healthy Bones Co. which was founded and is managed by Kevin Ellis, a retired marine who had celiac disease early in his life. He ended up with osteoporosis and did research for years to develop supplements to strengthen his bones. Look up his website. There is much to read and educate us about managing our bone density. I haven't been on the supplements long to know results but I have hope. The company is very good to deal with. I have refused to take all the meds they keep pushing toward me. I am 79 with osteopenia and other health issues. I don't want more side effects. They suggest other things to do besides take supplements to help our bones improve strength. He gives free webinars which have been helpful and they send lots of educational emails once you are on their list. Best wishes to healthier bones.
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2 ReactionsI found Tymlos easier to tolerate than generic Forteo. I was switched from Tymlos to teriparatide after my insurance company revoked my pre-authorization. I did about two months on teriparatide before quitting due to the side effects. I also had many issues with the specialty pharmacy.
After switching to an endocrinologist, I started on Evenity and have been tolerating that reasonably well. I do have joint pain after 10 injections and have gained 5 lbs but the side effects other than that are minimal.
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2 Reactions@samantha88 maybe you can be prescribed Raloxifene (Evista) instead of hormone replacement. It's a selective estrogen receptor modulator (SERM) It acts like estrogen in bones but blocks it in breast/uterine tissue.