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.

@windyshores

@mspatart I had excellent gains on 5 or 7 clicks so if * is still tough, don't worry. Towards the end of 18 months I did do 8 on days when I didn't have anything to do! Only a few times 🙂

Jump to this post

typo! 8 not * !

REPLY
@windyshores

@mspatart I had excellent gains on 5 or 7 clicks so if * is still tough, don't worry. Towards the end of 18 months I did do 8 on days when I didn't have anything to do! Only a few times 🙂

Jump to this post

OH EXCELLENT. Thank you so much for the encouragements. I am still at 7 clicks with no misery or only minor misery. Like you I plan to up to 8 if I'm not trying to accomplish anything that day. I am so grateful to hear that you too have done well using that method. Gosh, I don't know what I'd do without this forum and particularly your input. Thanks so much again. Ms Pat Art.

REPLY

Does anyone know if certain vitamins interact badly with Tymlos and cause more intense headaches, dizziness and nausea? Maybe why my Tymlos symptoms haven't abated in 6 months... I do the full click regime.

REPLY
@maradeur

Does anyone know if certain vitamins interact badly with Tymlos and cause more intense headaches, dizziness and nausea? Maybe why my Tymlos symptoms haven't abated in 6 months... I do the full click regime.

Jump to this post

@maradeur Tymlos raises calcium levels briefly ( a few hours). But many of us never tolerate a full dose. After two years I still can't, though I can tolerate 7 clicks out of 8 on the pen. I suggest you go down on your dose to 4 clicks (half dose, which is still therapeutic) and move the dose up until you reach the highest level you can tolerate. There may still be side effects but it is possible to reach a point that is very tolerable while still effective. You could also try just dropping to 7 clicks! I had a 20% gain, from severe to borderline osteoporosis, using 6-7 clicks most of the time. Everyone is different but worth a try. Make sure to tell your doc!

REPLY

My doctor suggested not taking supplemental calcium, to aim for 800 mg. dietary calcium.

REPLY
@windyshores

@maradeur Tymlos raises calcium levels briefly ( a few hours). But many of us never tolerate a full dose. After two years I still can't, though I can tolerate 7 clicks out of 8 on the pen. I suggest you go down on your dose to 4 clicks (half dose, which is still therapeutic) and move the dose up until you reach the highest level you can tolerate. There may still be side effects but it is possible to reach a point that is very tolerable while still effective. You could also try just dropping to 7 clicks! I had a 20% gain, from severe to borderline osteoporosis, using 6-7 clicks most of the time. Everyone is different but worth a try. Make sure to tell your doc!

Jump to this post

How was the Dexa on your hip, if you don’t mind me asking? My hips are worse than spine.

REPLY
@windyshores

@maradeur Tymlos raises calcium levels briefly ( a few hours). But many of us never tolerate a full dose. After two years I still can't, though I can tolerate 7 clicks out of 8 on the pen. I suggest you go down on your dose to 4 clicks (half dose, which is still therapeutic) and move the dose up until you reach the highest level you can tolerate. There may still be side effects but it is possible to reach a point that is very tolerable while still effective. You could also try just dropping to 7 clicks! I had a 20% gain, from severe to borderline osteoporosis, using 6-7 clicks most of the time. Everyone is different but worth a try. Make sure to tell your doc!

Jump to this post

Have you been able to exercise while using Tymlos? I’m recovering from fracture and a bunch of disk damage and am in the pool daily. I can’t stop,

REPLY

In answer to your thoughtful comments, I have reduced my dosage to 5 clicks and I feel less dizzy, nausea etc; I have the most pronounced bone loss in my spine; and i do exercise daily - 2 to 4 mile walk along hilly country roads! I'll try reducing the oral calcium from 1000 to 500 daily. Thank you so much for your help! My doctor has no time for me 🙁

REPLY
@maradeur

In answer to your thoughtful comments, I have reduced my dosage to 5 clicks and I feel less dizzy, nausea etc; I have the most pronounced bone loss in my spine; and i do exercise daily - 2 to 4 mile walk along hilly country roads! I'll try reducing the oral calcium from 1000 to 500 daily. Thank you so much for your help! My doctor has no time for me 🙁

Jump to this post

@marauder if you can do 6 clicks eventually, that is definitely a therapeutic dose. Five probably is too. I do 800mg calcium daily in supplements because I cannot do dairy. My calcium level remains high normal.

I read that Tymlos "eats" Vitamin D so I do gummies for 3,000 units/day- 3 gummies, one of which includes 445mcg Vitamin K.

Tymlos really helps spine. I had a 20% gain going from severe to borderline osteoporosis (-3.3 to -2.5). @sallyj2 My hip had a 9% gain. Unfortunately femur neck is still -3.6 (down from -4.1) so I convinced my doc to let me do some Evenity (I might only do 3-4 months) before Reclast.

No problems for me with exercising on Tymlos though sometimes I waited a couple of hours after injection. Not always. Every day was different!

REPLY
@sallyj2

Have you been able to exercise while using Tymlos? I’m recovering from fracture and a bunch of disk damage and am in the pool daily. I can’t stop,

Jump to this post

Absolutely. I am doing PT in the pool while on Tymlos and could not live without that outlet. Keep it up.

REPLY
Please sign in or register to post a reply.