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Immediate and severe Tymlos side effects.

Osteoporosis & Bone Health | Last Active: Aug 19 3:52am | Replies (16)

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@beanieone

@anne905, I experienced some immediate reactions to Tymlos beginning with my first injection, however, they weren’t as severe as the ones you describe; mine piled on and got increasingly worse over a two- to three-month period. By the third month, the adverse effects were, at times, excruciating. By the time I got my doc to believe these horrible, odd issues were caused by Tymlos, it had been 8-1/2 months. Almost immediately after stopping Tymlos, my symptoms disappeared.

I quickly began Evenity and had all twelve (24) injections without incident, save some injection-site pain and redness for a few days after several of the shots.

I should note that I tried oral meds previously and did not tolerate them at all. Since Tymlos, I’ve had GERD (although the “damage” may have been caused by the pain relievers I needed to try to deal with the adverse reactions to Tymlos).

My t-scores improved greatly, but because I was on both Tymlos and Evenity, without a DEXA between meds, I don’t know if the increases are due to one or both.

After Tymlos/Evenity, I chose Reclast as a maintenance drug - I’ve probably reached my lifetime limit but couldn’t convince myself that Prolia was the best choice for me going forward. Informed decisions!

What works for one of us may not work for another and this is an excellent forum to know what questions to ask and perhaps find some helpful information about OP and the issues surrounding it.

We are all on a journey and it helps to find others along the way whose maps and paths intersect with ours. Good health to you and all here!

Cheers!

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Replies to "@anne905, I experienced some immediate reactions to Tymlos beginning with my first injection, however, they weren’t..."

Thank you for sharing your experiences. I convinced my primary care physician to refer me to an endocrinologist after I opted to not start the Fosamax he has tried to convince me is my best option. Since joining this support group a few weeks ago, I've learned so much and have many questions for the endocrinologist appointment today. My scores are pretty bad and after a very brief attempt with Fosamax 18 years ago and 6 years on Fortical (2006-2012) which did grow bone but on my eye sockets!, I focused on diet and exercise, which hasn't increased or maintained bone. I appreciate learning about your experiences with Tymlos, Evenity, and Reclast.

Hi @beanieone it is so wonderful that you had great gains after 8.5 months of Tymlos plus 12 mo evenity. Could you share your bmd % gains if you don't mind?

I'm also curious, it sounded like you had Reclast before your anabolics therapy (tymlos and evenity). Could you share how many doses of Reclast you've had, and the length of drug holidays, if any, before you started Tymlos? Thanks a lot!