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Tymlos - can you stop it suddenly?
I had huge improvement on DEXA scan after 9 months of Tymlos. I was thinking about quitting it because of side effects but the improvment made me think it was worth continuing. The symptoms of hypercalcimia were getting very uncomfortable.
I saw the endocrinologist, who told me to talk to my doc about taking a different blood pressure medication to reduce the hypercalcemia - but I can't get in for an enitre month. So I stopped taking Tymlos 5 days ago mostly due to exreme leg cramps but I feel SO.MUCH.BETTER that I"m thinking I should just quit.
However, my physical and mental energy levels are now so low that I can barely function. I would think that I am depressed, but it's not like I don't care about anything - it's that there's nothing worth caring about. So this isn't good. But what do I do? I read that stopping Tymlos without a back up plan is bad for you, my physical body feels tons better, and some aspect of my mental body is draining faster than a cell phone searching for a signal.
Both the endocrinologist and my primary care doc are unavailable, and there's not point in going to an urgent care because they'll just tell me make an appt with primary care. But something is really not right. Any thoughts on how to move forward?
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@rosemaryrocks We could be soul sisters ! I'm new-ish to Tymlos and you described my status pretty accurately. I FORCE myself outside to walk for an hour within an hour of waking, it seems to help start the day positively - especially the Vit D factor. Is there someone who can come drag your butt out for a walk (and not take NO for an answer) ? I found myself in total new surroundings March 1st and after my walk I let the day 'unfold' as they say, but always stay purposeful (whatever that means to you). HANG IN THERE SISTER !!!! Set some goals !!
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5 Reactionsrosemaryrocks, you can quit taking Tymlos. It doesn't build up in your system to work. All those bone units that it created are still working for you now. In a month or so it won't be working and gradually you'll lose what you gained, but you won't have rebound.
You could start again at a lower dose. Some patients start low and build up until they don't feel well, then they back down until the dose is building bone without side effects. Many of us suspect that the standard doses are a little too high for some of us.
You could lower your vitamin D3 or calcium intake.
You could just skip a month, but it is a month that you could experiment with.
Of course you could contact your cardiologist and see if they would lower your BP dose or change it.
There is always Forteo which is a lower dose and is less likely to cause hypercalcemia.
Tymlos is such an amazing medication. I hope you don't give it up.
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3 ReactionsThank you. Due to communications issues with my doctor, I ended up stopping Tymlos about three weeks ago and discarding the remaining supply. I did not realize that non-daily options were possible. But also, I was really getting sick at the end, with mental confusion being a big part of the problem. VERY IMPORTANT: EVEN THOUGH MY SERUM CALCIUM WAS ONLY 10.3-10.6, the muscle cramps, upset stomach, and cognitivie issues were serious. I did not realize how sick I was until I stopped the medication and although I tried to tell them, both my primary and endocrinologist did not acknowledge my attempts to say things were pretty bad.
Now that my brain is back I have gotten them to listen but dang, what a frustrating experience. What else do I want to say? I want to scream in frustration. On my own, I spent a lot of time and effort getting psychological testing to find out what was going on with cognition, memory, and emotions. I was pretty sure that I wasn't in some kind of dementia slide because I was so aware of what was happening; however, the slow (over a period of 9 months) degradation of emotional self-regulation, focus, short-term memory, and ability to think didn't present as an identifiable side effect. And now, boom. My brain is back.
Now it is recommended that I take Reclast, and I gotta say, I'm pretty nervous about that.
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1 Reaction@rosemaryrocks Important to add that the Tymlos was highly effective in moving me from osteoporosis to ostopenia. Would I do this again? Yes - but only with a doctor's committment to closely monitor my serum calcium. An annual dr visit when taking Tymlos is insufficient, imo.
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1 Reaction@rosemaryrocks I ended my Tymlos regimen a few months ago, and opted to take Fosamax. I don't like the idea of an infusion. A weekly pill, I can handle, and if there's an issue, I can stop. You can't undo an infusion.
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1 Reaction@rosemaryrocks
any chance for Forteo.
@rosemaryrocks I had to quit Tymlos, having had a variety of side effects. Now on Forteo. Recently, when my calcium was up just 0.2 points above normal, my endo had me reduce to every 2 day dosing. Apparently it doesn't take much of an elevation to bring problems.. Glad you have your brain back!
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1 Reaction@gently I think the doc is responding to the fact that I have occasional heartburn and doesn't want to risk it, since I was so sensitive to the so-called minor changes caused by the increased calcium levels. Thank you for the suggesion.
@mamabear77 It goes back to the idea that an annual visit is insufficient. I'm very glad for you that your endocrinologist is paying such close attention.
@njx58 Yes, I sort of worry about the idea of long-term effects of the infusion, too.