Biophosphonates And Pots

[lynnie22]

I'm about to embark, after much delay, on a treatment for osteoporosis which is quite severe -- one of the biophosphonates called Atelvia.

Has anyone here had any experience (positive or negative) with treatments for osteoporosis? And its interaction with pots symptoms?

Would appreciate any feedback on this.

Thanks!!

[arizona girl]

Hi lynnie,

What have your doctors told you? I'm not familiar with this med. I imagine though with your medical history they feel they need to supplement you with what your not getting, which has caused the osteo. Have you searched the side effects of it yet? The thyroid issues and the neuropathy are often something that can cause symptoms of pots. Do you feel your pots symptoms are being managed well right now?

It's always tough when you need to add something new. I try to only do one thing at a time, so I can see if my symptoms change. Let us know how it goes.

[lynnie22]

Hi Arizona Girl, No my pots symptoms are not being managed at all actually. I haven't found a doctor in NYC who can do anything for me, and my visit to Mayo yielded one conclusion: exercise which I am doing.

It is interesting that you mentioned thyroid and neuropathy as NO DOCTOR has ever referred to these as issues re pots. They do not know the cause but never made that association.

Biophosphonates have serious side effects for some -- flu symptoms for months, not sure how they affect bp or hr. Atelvia is supposed to stop bone growth and loss, as they all do. Kind of puts a halt on whatever in our bodies controls bone functioning. I think these drugs are pretty awful, but the loss I am having is very fast -- which leads me to wonder what else is going on.

I would be interested in hearing more about pots and thyroid.