1. < Osteoporosis & Bone Health

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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communications | @communications | Mar 11 2:46pm
In reply to @gently "CTX measures a residue left in the blood by bone loss P1NP measures a different residue..." + (show)
@gently

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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Thank You!

REPLY
hudsonlady | @hudsonlady | Mar 12 8:57am

Has anyone gotten significant improvement from any of these medications? After a year on Evenity and three months on Prolia, I only showed a slight increase in bone density. Now am on Tymlos and wonder if it's worth the trouble,

REPLY
gently | @gently | Mar 12 9:44am

hudsonlady,
finally you are getting the anabolic.
Your sequence is a little concerning. Did your provider talk to you about Prolia rebound? Prolia usually needs a follow up medication another antiresporptive to protect you from the collective mess that Prolia causes.
Bone markers can save you from wasting time and bone on medications that aren't effective for you.
Almost everyone gains bone density and structural integrity from Tymlos. Those that don't experience gain have secondary causes, like parathyroid or kidney issue.
I'm on the other anabolic, Forteo, and have increased both density and integrity in my bones.
You might ask for bone markers now and in two months to successfully guide your course. It is definitely worth the trouble.

REPLY
1 reply
susanjohnston | @susanjohnston | Mar 12 11:29am
In reply to @gently "hudsonlady, finally you are getting the anabolic. Your sequence is a little concerning. Did your provider..." + (show)
@gently

hudsonlady,
finally you are getting the anabolic.
Your sequence is a little concerning. Did your provider talk to you about Prolia rebound? Prolia usually needs a follow up medication another antiresporptive to protect you from the collective mess that Prolia causes.
Bone markers can save you from wasting time and bone on medications that aren't effective for you.
Almost everyone gains bone density and structural integrity from Tymlos. Those that don't experience gain have secondary causes, like parathyroid or kidney issue.
I'm on the other anabolic, Forteo, and have increased both density and integrity in my bones.
You might ask for bone markers now and in two months to successfully guide your course. It is definitely worth the trouble.

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Thanks so much.

REPLY
idlehands | @idlehands | Mar 12 12:46pm
In reply to @susanjohnston "Thanks so much. Do you have any thoughts regarding taking it at night or in the..." + (show)
@susanjohnston

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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@susanjohnston it seems that it's totally a matter of personal preference as the when you do the tymlos injection. My nurse advised evenings in case it made me lightheaded (it did, momentarily) or sick in some other way which would interfere with my daytime activities. So I started doing it shortly after dinner, with 6 to 8 oz of water depending on how much I drank at dinner. And that works for me. If I have any lightheadedness I'll sit on the couch for a few minutes till it passes. Some people advise eating or drinking something salty before you inject, to raise the BP a bit and reduce the chance of lightheadedness or dizziness; I tried that and found it didn't really make a difference, but for some it does.

Some days I think about doing the shot in the morning, just to have it out of the way; lots of people seem to do that with no ill effects...

REPLY
susanjohnston | @susanjohnston | Mar 12 1:21pm

Thanks so much.
1) How many weeks/months did the lightheadedness or dizziness last once you started Tymlos and how many minutes did it last each time?
2) Do you know which drug you will take after Tymlos?

REPLY
1 reply
tangydog | @tangydog | Mar 12 2:48pm
In reply to @gently "CTX measures a residue left in the blood by bone loss P1NP measures a different residue..." + (show)
@gently

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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Hi,
My Tymlos was approved last week and a pharmacist will do the first dose with me. I will titrate as I have been reading on here as I tend to get medication side effects. This is the first time taking medication as I was avoiding for many years. 69yrs and worried that its time. My endocrinologist informed me that Tymlos can now be taken for more than 2 years. I requested bone markers which he did not suggest but was happy to order. I agree that it's important to know where you are at before you start and then do a followup of the bone markers in 3-6 months of being on the Tymlos. My bone markers seem to be in the normal range for post menopausal. My DEXA scores are about 3.1 unchanged from 1.5 years ago so hoping all my exercise has been helping? Good luck

REPLY
1 reply
idlehands | @idlehands | Mar 13 9:30am
In reply to @susanjohnston "Thanks so much. 1) How many weeks/months did the lightheadedness or dizziness last once you started..." + (show)
@susanjohnston

Thanks so much.
1) How many weeks/months did the lightheadedness or dizziness last once you started Tymlos and how many minutes did it last each time?
2) Do you know which drug you will take after Tymlos?

Jump to this post

@susanjohnson Second question first: no idea what comes next. I can barely plan my weekend let alone a year or two away 🙂 My lightheadedness continues to come up every now and then; maybe once every two or three weeks. I'm finishing my 4th month of tymlos. At first it lasted a few minutes when it happened, now when it does, it's like just a brief wave of it in my head and then it's gone. I consider myself fortunate, tho not a good role model.

REPLY
1 reply
susanjohnston | @susanjohnston | Mar 13 9:44am
In reply to @idlehands "@susanjohnson Second question first: no idea what comes next. I can barely plan my weekend let..." + (show)
@idlehands

@susanjohnson Second question first: no idea what comes next. I can barely plan my weekend let alone a year or two away 🙂 My lightheadedness continues to come up every now and then; maybe once every two or three weeks. I'm finishing my 4th month of tymlos. At first it lasted a few minutes when it happened, now when it does, it's like just a brief wave of it in my head and then it's gone. I consider myself fortunate, tho not a good role model.

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Thanks again. Did you gradually increase the dose and if so, could you share the amounts and timeline?

REPLY
1 reply
idlehands | @idlehands | Mar 13 10:23am
In reply to @susanjohnston "Thanks again. Did you gradually increase the dose and if so, could you share the amounts..." + (show)
@susanjohnston

Thanks again. Did you gradually increase the dose and if so, could you share the amounts and timeline?

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No, I started at 80; didn't even know about doing fewer clicks as a possibility until I'd been at 80 for a couple weeks, and by then it wasn't necessary.

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