1. < Osteoporosis & Bone Health

Dosage Adjustments On Tymlos Pen

Posted by julieann9 @julieann9, Apr 16, 2023

I recently started using the Tymlos pen. I am on the beginning of
the second pen. I have been on the full dosage and the
side effects have been horrendous. I am 5 foot, 1 inch and
weigh 110 pounds. I asked my doc and the pharmacist at the
specialty pharmacy about starting at a lower dose. They both said
the pen only administers the full dose.
Now I am reading that people have adjusted the dose on the
Tymlos pen by using clicks. Can someone please explain to me
how to do this. Your help is much appreciated. Thanks.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

drsuefowler | @drsuefowler | Nov 10, 2023
In reply to @windyshores "I have to admit that even after all this time, there are days when I am..." + (show)
@windyshores

I have to admit that even after all this time, there are days when I am a little woozy when I go to morning art class. But when I go, I feel better!

My doc- and my second opinion endo- did not want to prescribe Evenity after Tymlos. They said there is no data and wanted Reclast.

I periodically sent my endo accounts of others doing Evenity after Reclast and he wrote "Thank you for your persistence. We will agree to prescribe Evenity." I thought that was slightly humorous. I talked with him and he says he is not against it but cannot recommend it.

I took a master class more than two years ago with Dr. Lani Simpson who was a well-regarded proponent of natural approaches but was about to go on Tymlos herself. One of the presenters was a patient who did Evenity after Tymlos and had more gains.

My spine went from -3.3 to -2.5 (though it might be -2.6 due to a fracture effect; it is not always certain which vertebrae fractures) , my hip improved but my femur neck is still -3.6 (Form -4.1). I want more progress !

I am nervous like everyone else. There is no opporunity to ramp up and adjust to Evenity! I will try it and if side effects are literally not tolerable (and I will tolerate a lot) then I will do the 20% Reclast and hope to be able to do that.

Jump to this post

You have made wonderful progress on your spine and hip. I understand you wanting even better results, especially on your femur. All that work to adjust to Tymlos paid off. I was wondering if you could have a trial dose of Evenity like you were going to do with Reclast?

REPLY
maradeur | @maradeur | Nov 10, 2023

Re the subject of personal adjustment of the tymlos pen dosage by counting the clicks, I've had to tackle that when traveling. I'm at 8 clicks normally but having been delayed, or chosen to extend a vacation, I have decided to jab myself daily with a half dose, or a full dose every other day, and it seems to work out. But there is no info for those situations; CVS Specialty impossible to contact overseas; ditto doctor, so you just have to improvise!

REPLY
gently | @gently | Nov 11, 2023
In reply to @windyshores "I have to admit that even after all this time, there are days when I am..." + (show)
@windyshores

I have to admit that even after all this time, there are days when I am a little woozy when I go to morning art class. But when I go, I feel better!

My doc- and my second opinion endo- did not want to prescribe Evenity after Tymlos. They said there is no data and wanted Reclast.

I periodically sent my endo accounts of others doing Evenity after Reclast and he wrote "Thank you for your persistence. We will agree to prescribe Evenity." I thought that was slightly humorous. I talked with him and he says he is not against it but cannot recommend it.

I took a master class more than two years ago with Dr. Lani Simpson who was a well-regarded proponent of natural approaches but was about to go on Tymlos herself. One of the presenters was a patient who did Evenity after Tymlos and had more gains.

My spine went from -3.3 to -2.5 (though it might be -2.6 due to a fracture effect; it is not always certain which vertebrae fractures) , my hip improved but my femur neck is still -3.6 (Form -4.1). I want more progress !

I am nervous like everyone else. There is no opporunity to ramp up and adjust to Evenity! I will try it and if side effects are literally not tolerable (and I will tolerate a lot) then I will do the 20% Reclast and hope to be able to do that.

Jump to this post

I, too,thank you for your persistence. Who is your endocrinologist. He sounds pretty wonderful. Slightly humerous!

REPLY
njhornung | @normahorn | Nov 11, 2023

While there is no opportunity to "ramp" up, it feasible to start with half dosage but that may take a lot of arm twisting. Each treatment consists of injections with 2 syringes. They could inject only one and save the other for the following month. If no intolerable adverse reactions, then one could go to full dosage. As least this approach would minimize the med in your body if there would be a reaction.

REPLY
gently | @gently | Nov 11, 2023
In reply to @drsuefowler "Good idea! I already lose hair. It would be hard to tell if it's just from..." + (show)
@drsuefowler

Good idea! I already lose hair. It would be hard to tell if it's just from getting older or the medicine. I'm still on 2 clicks and still dizzy. My B/P is low, 90/54. My endo said I could I could take any amount? I wonder if 20 mcg might might help my bones. It's got to be better than nothing. I take all the recommended supplements but it's not enough.

Jump to this post

I like your endo. 20mcg is what you would receive on Forteo. My guess is that we get the same dose. Maybe it's too much for us lightweights.

REPLY
1 reply
drsuefowler | @drsuefowler | Nov 11, 2023
In reply to @gently "I like your endo. 20mcg is what you would receive on Forteo. My guess is that..." + (show)
@gently

I like your endo. 20mcg is what you would receive on Forteo. My guess is that we get the same dose. Maybe it's too much for us lightweights.

Jump to this post

I think you're right. We are too small for 80 mcg. I try to tell my doctors that I'm the size of a child. Most still don't get it. I think my endo wants me on 40 mcg though.

REPLY
jmla | @jmla | Nov 29, 2023

Hi All - I am new to this forum. I’m so happy to have found all of you. I’m sorry if this is a late post, but I just started Tymlos about 10 days ago. I took the full dose for two days and had major side effects so I had to drop to 40mcg. I still had some symptoms at 40 (tachycardia for 15 min., headache, fatigue), but they are much more manageable and have almost gone away over the last week. One benefit of injecting at night for me is that I sleep like a log! (I have not slept this well in years.) My doctor wants me to stay at 40mcg until my first blood test to see if that dose is adequate for me. I am 5’3” and 110 lbs. I would like to click up to 50 mcg, but my doctor asked me to stay at 40. He said the drug would still work and he doesn’t want me having side effects. Like many of you, I would tolerate the side effects for better bones at the end of two years. Does anyone know if there are studies about the effectiveness of half the regular dose of Tymlos?

REPLY
3 replies
mayblin | @mayblin | Nov 29, 2023
In reply to @jmla "Hi All - I am new to this forum. I’m so happy to have found all..." + (show)
@jmla

Hi All - I am new to this forum. I’m so happy to have found all of you. I’m sorry if this is a late post, but I just started Tymlos about 10 days ago. I took the full dose for two days and had major side effects so I had to drop to 40mcg. I still had some symptoms at 40 (tachycardia for 15 min., headache, fatigue), but they are much more manageable and have almost gone away over the last week. One benefit of injecting at night for me is that I sleep like a log! (I have not slept this well in years.) My doctor wants me to stay at 40mcg until my first blood test to see if that dose is adequate for me. I am 5’3” and 110 lbs. I would like to click up to 50 mcg, but my doctor asked me to stay at 40. He said the drug would still work and he doesn’t want me having side effects. Like many of you, I would tolerate the side effects for better bones at the end of two years. Does anyone know if there are studies about the effectiveness of half the regular dose of Tymlos?

Jump to this post

Hi @jmla I'm taking Forteo, an almost same drug as Tymlos, although forteo only has one dose which is 20mcg. Our ht and wt are similar though I am just a bit heavier than you so I thought to give you what I experienced. For the first month and a half, I experienced low blood pressure all day long, as low as 80/50, which made me not wanting to get out of bed and lots of fatigue during the day. I didn't do much of exercise either during that period. I didn't experience headache or tachycardia. Low blood pressure is a known side effect of pth and tachycardia could occur as a compensatory mechanism. So you might to check your blood pressure. My endo asked me to drink 10-12 cups of water daily, and if needed, adding some salt to water. Gradually my body got used to the med and second month was a lot better! Now I didn't feel anything. Hope this helps

REPLY
1 reply
tarponmkk | @tarponmkk | Nov 30, 2023
In reply to @jmla "Hi All - I am new to this forum. I’m so happy to have found all..." + (show)
@jmla

Hi All - I am new to this forum. I’m so happy to have found all of you. I’m sorry if this is a late post, but I just started Tymlos about 10 days ago. I took the full dose for two days and had major side effects so I had to drop to 40mcg. I still had some symptoms at 40 (tachycardia for 15 min., headache, fatigue), but they are much more manageable and have almost gone away over the last week. One benefit of injecting at night for me is that I sleep like a log! (I have not slept this well in years.) My doctor wants me to stay at 40mcg until my first blood test to see if that dose is adequate for me. I am 5’3” and 110 lbs. I would like to click up to 50 mcg, but my doctor asked me to stay at 40. He said the drug would still work and he doesn’t want me having side effects. Like many of you, I would tolerate the side effects for better bones at the end of two years. Does anyone know if there are studies about the effectiveness of half the regular dose of Tymlos?

Jump to this post

What blood test will show if dose is adequate? Thanks

REPLY
1 reply
drsuefowler | @drsuefowler | Dec 1, 2023
In reply to @tarponmkk "What blood test will show if dose is adequate? Thanks" + (show)
@tarponmkk

What blood test will show if dose is adequate? Thanks

Jump to this post

There are 2 blood tests that should be taken at the beginning of treatment: CXT and P1NP. Then after a period of time, they can be given again to see if there has been change. The first one gives information about bone loss markers and the second about bone gain markers. I hope that this helps.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.