← Return to Anyone here with HCM that also has osteoporosis?

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Profile picture for Debra, Volunteer Mentor @karukgirl

Hello Fellow (alumni) Mentor! @cynaburst, it's good to see you here.
I remember when I first joined Connect and read everything you wrote. You gave me something to hold on to when I felt so alone and scared...and faced open heart surgery.

I have terrible osteoporosis, and take nothing, because for me what I took, nothing worked and the side effects from some drugs were not something I wanted to live with. I broke both bones in my left wrist and had unsuccessful surgery.
I seem to get worse each year at my Dexa scan, but I keep walking like a fiend and trying to stay as healthy as I can.
There's a whole osteoporosis group on Connect, but I have not participated.
There is so much controversy surrounding meds vs no meds, which med vs natural approach, I steered clear.
Have you talked to your cardiologist about side effects with Tymlos and HCM? Are you aware of any? I read a little bit and it doesn't state specific contraindications with HCM, but does say you should inform your provider before starting it.

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Replies to "Hello Fellow (alumni) Mentor! @cynaburst, it's good to see you here. I remember when I first..."

@karukgirl Thanks for your kind words.

Yes, I have spoken with my Mayo HCM doc and another HCM expert I know. Both seem to think it is worth trying. Tymlos can cause tachycardia and a drop in blood pressure so I am nervous, but I have also been reading people's experiences here on MCC in the osteoporosis section and they have given me some good feedback such as you can start on a lower dose and increase to see how you react.

I have had 4 fractures since 2020 and I keep falling down, so i am super nervous about breaking something worse. This last fracture was a doozy. I couldn't move my arm at all afterward and was in this horrible plastic brace for 3 weeks until they decided to do surgery. My whole arm and hand turned black and swelled like a balloon.

I am inclined to probably try and see how it goes. I don't want to have another accident. But would love to hear from anyone else who has similar experience.