Tymlos pens - can you still take a smaller dose?
I am about to start Tymlos, and the pharmacist from the specialty pharmacy told me that the pen only has two settings - 0 mg and 80 mg. and it doesn't click in between. Though he admits he only has touched a tester pen and obviously, the materials from the manufacturer don't explain how to get a smaller dose.
I really want to try a smaller dose at first cause I have a heart condition and am very worried about side effects. Is there anyone out there who is currently doing a reduced dose of Tymlos? I plan to try to titrate up, and understand this may not be an exact science, but would love any advice.
Thanks for any input.
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Cynaburst, you have to listen for the clicks when you dial, move the dial slowly. It will stop at 80mcg, by stopping you draw your own setting. Nothing on the dial is going to tell you how much you are drawing. It is only by hearing the clicks.
Tymlos can drop your blood pressure immediately upon injection, but then gradually rises over the next four or so hours.
The medication draws calcium into the blood stream which expands the blood vessels. I make the heart beat harder to move the blood through those expanded vessels. You may feel or hear your heart pounding. Some use a little salt, a little caffeine to constrict those blood vessels a little reducing the effect. It is best to take the injection while hydrated because it increases the volume of blood in those expanded vessels.
I think it's better to start Tymlos at a lower dose, so that you have a better understanding of how it might affect you. Some start at one or two clicks, some at five or six. They stop and back down if there are negative effects.
Tymlos is and excellent medication. I hope it works well without side effects for you.
I do know someone who just started four days ago. The first two efforts ended up at eight. She decided, carefully, to waste those two draws figuring that by staying at six for a while would recover the 30 days.
Otherwise, I wouldn't know that they haven't changed the pens.
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3 ReactionsThe pharmacist is wrong. The pen only has two visible settings (0 and 80), but every click in between equals 10. All you need to do is count the clicks.
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3 Reactions@njx58
I talked to my doctor about my need to start by micro dosing because of my intolerance to two other drugs so far (Biphosphonate and Evenity) and he seemed not to even know about this. This is invaluable information.
Yes I only learned about this here on this website. Clearly it is not something that the medical establishment knows about. I don’t have my pen yet but I will report when I have tried it.
@cynaburst Some people here have started with just a few clicks, like 3 or 4. Then, they try to increase the dose if they are tolerating it well. There are people who were never able to get past 6 clicks. The only way to find out is to try it.
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1 ReactionHonestly, if it weren't for reading about starting out with a low dose I am not sure I would have agreed to try the drug. I have a heart condition which can already cause a drop in BP and tachycardia and I have a history of afib so I am nervous about trying Tymlos. That is why I freaked out when the pharmacist told me that it was impossible.
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1 ReactionCynaburst, it was windyshores who introduced the idea here, and then convinced her physicians to encourage their other patients to count clicks. Windyshores noted that she always tells her doctors, but not always before, she undertakes a unusual path. Cheers to windyshores wherever she is.
To share my experience with Tymlos as I have been on it for about a year. I started with a lot of side effects, they took about 3 months to subside. I also titrated when starting based on what I read here. And Yes, the Drs, pharmacists, and the tymlos folks are all against titrating. I titrated for about a week. I first started injecting it in the evenings thinking I would sleep thru any side effects. However the worst effect I had and the one I still have is frequent urination. So getting up all night was not working. Pharmacist said to inject in mornings and that is much better for me. The side effects I had were light headiness, GI issues, and frequent urination. So being active right after I inject seems to help. And yes you do need to drink a lot of water to help with the blood vessel effect. I also think I may have just gotten use to the way I feel and have accepted it, knowing I will be stopping at the end of the year. My DEXA did improve a little. Good luck.
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