Tymlos side effects

Posted by loh @loh, Jan 29 8:25am

Has anyone else had leg/back aches with Tymlos? I've been on it since October and lately I've had terrible aches in my legs and lower back, especially at night. Is that one of the known side effects? Thanks!

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I also have questions about side effects. I had my first dose of TyMLOS last night. I did ok until 3 hours later when the headache started. It progressively got worse. I pretty much didn’t sleep because of the nausea that set in and i thew up through out the night. Tried drinking water but couldn’t keep it down and so the dehydration exasperated my headache. Has anyone had this reaction and did your doctor prescribe anti nausea medicine or prescription. Pain medication for headaches.

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@loh, tymlos can cause hypercalcemia which can make you quite achy. Call your prescribing physician and ask for calcium testing. I would skip the injection for a day or two, without waiting to hear back from my physician. Some would caution you to wait for permission. The dosing is too high for some of us. Keep us posted.

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@gently

@loh, tymlos can cause hypercalcemia which can make you quite achy. Call your prescribing physician and ask for calcium testing. I would skip the injection for a day or two, without waiting to hear back from my physician. Some would caution you to wait for permission. The dosing is too high for some of us. Keep us posted.

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Thank you, this is super helpful! I wouldn't have known to ask about this. I've been waiting to hear back from my doctor, hopefully I'll hear back today and can ask this question. I looked up hypercalcemia and it said it can cause osteoporosis. What?? I'm taking this to help with that! Anyway, thank you so much!!

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2nd day on TYMLOS. I didn’t have the nausea bit I did take a Dramamine to help. However the headache was excruciating. It started within an hour of the injection at 7:30pm and lasted through the night. It’s noon now and the headache is starting to fade. Any suggestions for OTC migraine meds? Should I cut down my TYMLOS dose from full to half

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@gently

@loh, tymlos can cause hypercalcemia which can make you quite achy. Call your prescribing physician and ask for calcium testing. I would skip the injection for a day or two, without waiting to hear back from my physician. Some would caution you to wait for permission. The dosing is too high for some of us. Keep us posted.

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Hi @gently, just wanted to give you the update...I spoke with my doctor and she wants me to stop Tymlos for a week and see if the aches go away. If they do, then it's the Tymlos and she wants to switch me to Forteo. If they don't, then she wants me to come in for testing (I'm guessing for calcium level). Either way, looks like I'm done after just short of 3 months. I'm going to push back to see if I can get calcium levels tested regardless. Thanks again for your help!

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@strongerbones

2nd day on TYMLOS. I didn’t have the nausea bit I did take a Dramamine to help. However the headache was excruciating. It started within an hour of the injection at 7:30pm and lasted through the night. It’s noon now and the headache is starting to fade. Any suggestions for OTC migraine meds? Should I cut down my TYMLOS dose from full to half

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I sympathize, the headaches were awful! I took Advil which is probably not great, but helped and then headaches went away after about 2 weeks. Hang in there!

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I've been on Tymlos for about a week. It is somewhat overlapping with the end of my "post Reclast" year. I've had multiple stress fractures/stress injuries in one of my feet. Normally these would be considered biomechanical fractures, but the frequency has led my endocrinologists at Stanford to make the case for fragility fractures and so my insurance approved Tymlos. I had to reduce dose after very strong palpitations on full dose. Thanks to what I had read from @windyshores before starting the Tymlos, I was aware this was an option. One doctor didn't want me to start on a reduced dose. The other thought it was fine. I'm up to 6 clicks and feel okay. Unfortunately now I need a stress test because the palpitations were so strong I had (or thought I had) some pain. But for now on 6 clicks, I have only mild palpitations and basically pass out to sleep soon after the dose, but during the day--I am so tired. My body isn't fatigued like after a vaccination or illness, but I feel like I could sleep and sleep and have very low energy. Has anyone else had this side effect? I don't think I'm having any other side effects so far but I do think I have had increased muscle, joint, bone pain from the Reclast so can't really tell. I'm not sure I can handle being this tired for two years...

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@jessbricht

I've been on Tymlos for about a week. It is somewhat overlapping with the end of my "post Reclast" year. I've had multiple stress fractures/stress injuries in one of my feet. Normally these would be considered biomechanical fractures, but the frequency has led my endocrinologists at Stanford to make the case for fragility fractures and so my insurance approved Tymlos. I had to reduce dose after very strong palpitations on full dose. Thanks to what I had read from @windyshores before starting the Tymlos, I was aware this was an option. One doctor didn't want me to start on a reduced dose. The other thought it was fine. I'm up to 6 clicks and feel okay. Unfortunately now I need a stress test because the palpitations were so strong I had (or thought I had) some pain. But for now on 6 clicks, I have only mild palpitations and basically pass out to sleep soon after the dose, but during the day--I am so tired. My body isn't fatigued like after a vaccination or illness, but I feel like I could sleep and sleep and have very low energy. Has anyone else had this side effect? I don't think I'm having any other side effects so far but I do think I have had increased muscle, joint, bone pain from the Reclast so can't really tell. I'm not sure I can handle being this tired for two years...

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@jessbricht I did better doing Tymlos in the morning, not sure why. I made sure blood pressure wasn't too low with a cuff, at first and hydrated.

At first I rested in bed but found I felt better if I got up and out, again not sure why. Perhaps it helped my bp.

I have occasional afib with very high heart rate and one piece of advice is to move around so maybe moving helps with the increased heart rate too. But keeping blood pressure okay also helps.

Of note, as I have noted before, in my 2 years on Tymlos I did not have a single afib episode. But in the last 6 months I did indeed feel tired.

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I tried tymlos once, and it gave me a severe headache in the back of my head for about an hour, and then I had a nonsevere headache for a week. I was afraid I was going to have a stroke. So I stopped taking it. I have osteoporosis, and I'm looking for a new drug. What do you suggest?

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@loh

Hi @gently, just wanted to give you the update...I spoke with my doctor and she wants me to stop Tymlos for a week and see if the aches go away. If they do, then it's the Tymlos and she wants to switch me to Forteo. If they don't, then she wants me to come in for testing (I'm guessing for calcium level). Either way, looks like I'm done after just short of 3 months. I'm going to push back to see if I can get calcium levels tested regardless. Thanks again for your help!

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@loh, I'm happy to hear back. I'll be curious how soon the aches go away. Good thinking to get your calcium levels tested anyway. You might be fine on a lower dose of Tymlos.
I'm happy on Forteo.

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