Need your feedback re: possible pre - Tymlos routine ???

Posted by susanjohnston @susanjohnston, Mar 9 3:18pm

I will be starting Tymlos in a few weeks. Based on this community's discussions of possible side effects, I have designed a plan to follow prior to each evening injection. I will ingest the following: an anti- nausea dissolvable tab, an electrolyte chew, and soda crackers. I will then inject the Tymlos starting at Level #1 and increasing the dose every two weeks. I would be very grateful for any additional suggestions or revisions you may have. And when is a logical time to test for Hypercalcemia and Vitamin D after starting Tymlos?

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I've been on Tymlos for about 4+months, using the full dose (I hadn't read about taking smaller ones), and are relatively free of any reactions caused by Tymlos. Occasionally I miss an injection though. Hopefully that doesn't have any bad hidden effects. Will report DEXA results in April. Osteoporosis feels like the Wild West in terms of uncharted territory....

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The only problem for me taking Tymlos at nite is you need to be hydrated. That would make me pee all nite. For that reason I take it in the morning after eating and hydrating with water (with pinch of mineral salt). I feel far better moving than lying down.

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susanjohnson, well planned.
Osteoresearch's point about hydration and the need to get up in the middle of the night is quite helpful. Without hydration you might feel those palpitation as you try to sleep.
I was given prior serum PTH, D and calcium testing before at three and six months, along with CTX and P1NP.
I was a delayed responder and so the bone markers were repeated sooner. I'm taking Forteo, but this endocrinologists testing is the same with Tymlos. After six months the testing was done once a year.
Bone markers are best repeated after two months on Tymlos. If you are having markers, you could wait until two months after you've reached what looks like your max dose.
It would be really interesting to see your markers at each measurement of low dose Tymlos. It would give us a new perspective on how low a dose is advantageous. I'm betting it's pretty low.
I'm happy for your bones.

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I think you are being far too conservative with the dose. Starting at 1 and increasing it every two weeks is far too cautious. It will take you two months just to get to 5.

I would start at 3. If that goes well, move up to 4 the very next day. If that works, move up to 5. If you need to stay at a level for a few days, that's fine. The goal isn't to take as little Tymlos as possible - it's to take as much as possible.

Also, you can have mild side effects and that's ok. Don't think "oh, I went up to 4 and I feel a little lightheaded, so I have to go back to 3." I've been taking it for a year and I still feel a little "something", but nothing I can't deal with.

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You have to go at a pace that gives you peace of mind, but I'm inclined to agree with njx58, tho I believe there's an arithmetic error in there. Going up 1 click every 2 weeks would require 4 months to get to a full dose. But still... the idea is to take as much Tymlos as possible, not as little. Most of us who have had side effects have had them soon after starting. My view is that if you start at 1 click and have no side effects that day, the next day increase to 2 clicks, and continue like that. If you do have side effects, depending on how bothersome they are, you could hold at that dose for a few days and then try increasing it, or you could back down by a click for a few days and then increase it again and see how you do. I've been on tymlos 5 months and still occasionally have some mild lightheadedness; fortunately for me it's not bothersome and I expect I'll just put up with it for the duration. Every silver lining has a cloud, but they don't always bring rain.

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I had my first dose of Tymlos at my doctor's office without any issues at the prescribed dosage. The doctor did warn me that there might be side effects but I never had any of the issues some face with dizziness, light headedness, or a racing heart. It did elevate my heart rate briefly (10% higher). My doctor advised me to take it at bedtime so I could lie down.

Perhaps you can ask your doctor about taking your first injection at their office so they can monitor you?

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@gently

susanjohnson, well planned.
Osteoresearch's point about hydration and the need to get up in the middle of the night is quite helpful. Without hydration you might feel those palpitation as you try to sleep.
I was given prior serum PTH, D and calcium testing before at three and six months, along with CTX and P1NP.
I was a delayed responder and so the bone markers were repeated sooner. I'm taking Forteo, but this endocrinologists testing is the same with Tymlos. After six months the testing was done once a year.
Bone markers are best repeated after two months on Tymlos. If you are having markers, you could wait until two months after you've reached what looks like your max dose.
It would be really interesting to see your markers at each measurement of low dose Tymlos. It would give us a new perspective on how low a dose is advantageous. I'm betting it's pretty low.
I'm happy for your bones.

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Could you explain "bone markers'?
Are these specific blood tests; could a primary order them or do they have to be ordered by an endocrinologist?
Thank you

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CTX measures a residue left in the blood by bone loss
P1NP measures a different residue left in the blood when new bone is laid down.
Some of our cells break bone down others deposit new bone.
Osteoclasts represented by CTX clear away fissured bone and call out the osteoblasts represented by P1NP.
We need both types of cells to have strong bones.
Most of our medications stop the process entirely by blocking the the initiating bone breaking cells. They prevent fracture by collecting the old fissured bone.
Prolia and Evenity lay down new bone without clearing away the older fissured bone.
It's good to know what your bones are doing before taking a medication. It can help decide which medication would be best at preventing fracture. In general the bone markers are used to see if the medication is making your bones stronger. This way you don't take a medication for a year or two, that simply isn't working.
Your primary can order bone markers, and your endocrinologist can order bone markers. The endocrinologists are usually better at getting your insurance to pay. But many endocrinologist don't order them.
You can order your own, but you have to pay for them. The best price is at Jason Health.
https://www.google.com/search?q=osteoporosis+bone+marker+video&rlz=1C1CHBF_enUS1151US1151&oq=osteoporosis+bone+marker+video&gs_lcrp=EgZjaHJvbWUyBggAEEUYOTIHCAEQIRigATIHCAIQIRigATIHCAMQIRigATIHCAQQIRigATIHCAUQIRifBdIBCTEwNDY1ajFqOagCCLACAfEFICIgjMelVLw&sourceid=chrome&ie=UTF-8#fpstate=ive&vld=cid:2a6aae68,vid:3q1N_wzxZ_o,st:0

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@njx58

I think you are being far too conservative with the dose. Starting at 1 and increasing it every two weeks is far too cautious. It will take you two months just to get to 5.

I would start at 3. If that goes well, move up to 4 the very next day. If that works, move up to 5. If you need to stay at a level for a few days, that's fine. The goal isn't to take as little Tymlos as possible - it's to take as much as possible.

Also, you can have mild side effects and that's ok. Don't think "oh, I went up to 4 and I feel a little lightheaded, so I have to go back to 3." I've been taking it for a year and I still feel a little "something", but nothing I can't deal with.

Jump to this post

Thanks so much. Do you have any thoughts regarding taking it at night or in the morning? And how much liquid do you drink at dose time and do you do that right before the dose?

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