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.

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windyshores | @windyshores | Dec 1, 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?

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@jmla I am sensitive to meds and could not tolerate Forteo. I am the exact same size and weight as you. I got up to 6 or even 7 clicks over time with Tymlos and had excellent gains. If you are tolerating 4 clicks I think it is reasonable to go up to 5. Do you need your doc's permission? My doc let me do whatever I wanted and could tolerate. I think side effects are kind of up to us, but effectiveness is the doc's responsibility 🙂

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2 replies
tarponmkk | @tarponmkk | Dec 1, 2023
In reply to @drsuefowler "There are 2 blood tests that should be taken at the beginning of treatment: CXT and..." + (show)
@drsuefowler

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.

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Thank you very much

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jmla | @jmla | Dec 3, 2023
In reply to @mayblin "Hi @jmla I'm taking Forteo, an almost same drug as Tymlos, although forteo only has one..." + (show)
@mayblin

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

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Hi @mayblin. This is very helpful, thank you. I drink 80-90oz of water per day as a rule, plus other liquids. I also exercise almost every day which definitely helps me. I appreciate the tip about adding salt to my water. I have been careful about salt, but I have low blood pressure naturally so I will start checking at home. Thanks again!

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jmla | @jmla | Dec 3, 2023
In reply to @windyshores "@jmla I am sensitive to meds and could not tolerate Forteo. I am the exact same..." + (show)
@windyshores

@jmla I am sensitive to meds and could not tolerate Forteo. I am the exact same size and weight as you. I got up to 6 or even 7 clicks over time with Tymlos and had excellent gains. If you are tolerating 4 clicks I think it is reasonable to go up to 5. Do you need your doc's permission? My doc let me do whatever I wanted and could tolerate. I think side effects are kind of up to us, but effectiveness is the doc's responsibility 🙂

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Hi @windyshores. Thanks for responding. I think my doctor is also concerned about my blood calcium levels. I’m on the high side of normal. I may give 50 a try once or twice just to see if I can tolerate it. My next blood test is in about 8 weeks, and I do want to have an accurate read on my blood calcium at 40 mcg so we can decide next steps. That said, I hate waiting. (I’m not a patient person - one of my character flaws).

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1 reply
windyshores | @windyshores | Dec 4, 2023
In reply to @jmla "Hi @windyshores. Thanks for responding. I think my doctor is also concerned about my blood calcium..." + (show)
@jmla

Hi @windyshores. Thanks for responding. I think my doctor is also concerned about my blood calcium levels. I’m on the high side of normal. I may give 50 a try once or twice just to see if I can tolerate it. My next blood test is in about 8 weeks, and I do want to have an accurate read on my blood calcium at 40 mcg so we can decide next steps. That said, I hate waiting. (I’m not a patient person - one of my character flaws).

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My calcium is also high normal but my doc was not concerned. I take 800mg calcium rather than the suggested 1200mg. I can't eat dairy.

Can you reduce your calcium intake?

I believe Tymlos' increase in calcium levels is transient. It matters when you have your blood tested. Don't take Tymlos before hand. And don't take any calcium 24-48 hours before the blood test. That is what I was told.

I would not expect to avoid all side effects, as you know: tolerable means different things to different people. It sounds to me like your doc is very cautious and conservative, which can be good or bad! I personally kept pushing my dose up as I was able and my calcium levels did not change.

Is an endocrinologist treating you or a PCP? Do you have any heart issues or issues with electrolytes? Is your parathyroid okay?

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2 replies
jmla | @jmla | Dec 4, 2023
In reply to @windyshores "My calcium is also high normal but my doc was not concerned. I take 800mg calcium..." + (show)
@windyshores

My calcium is also high normal but my doc was not concerned. I take 800mg calcium rather than the suggested 1200mg. I can't eat dairy.

Can you reduce your calcium intake?

I believe Tymlos' increase in calcium levels is transient. It matters when you have your blood tested. Don't take Tymlos before hand. And don't take any calcium 24-48 hours before the blood test. That is what I was told.

I would not expect to avoid all side effects, as you know: tolerable means different things to different people. It sounds to me like your doc is very cautious and conservative, which can be good or bad! I personally kept pushing my dose up as I was able and my calcium levels did not change.

Is an endocrinologist treating you or a PCP? Do you have any heart issues or issues with electrolytes? Is your parathyroid okay?

Jump to this post

I appreciate this information. I don’t have heart issues or problems with my parathyroid. I don’t take any calcium supplements as I get my 1200 mg in my food. I’ve gotten more careful not to exceed the 1200 which is easy for me to do because my favorite foods all have loads of calcium in them. 🙂 When I had my recent bloodwork it was before I started Tymlos.

I see a rheumatologist. He’s a fantastic doctor and an osteoporosis specialist. He has indicated to me that 40mcg is a therapeutic dose, and everyone’s tolerance is different, but I’m the type of person who would rather take the highest tolerable dose. I will most likely try 50mcg to see if I can live with it and then tell him and see what he says. If I feel the same as I do on 40, and it won’t impact my calcium levels, I would want to increase. It’s only been 2 weeks, so I’m very glad to have adjusted downward, which eliminated the really bad effects of the full dose. The full 80mcg is hard for those of us who need to allow our bodies to get used to it.

REPLY
2 replies
mayblin | @mayblin | Dec 4, 2023
In reply to @jmla "I appreciate this information. I don’t have heart issues or problems with my parathyroid. I don’t..." + (show)
@jmla

I appreciate this information. I don’t have heart issues or problems with my parathyroid. I don’t take any calcium supplements as I get my 1200 mg in my food. I’ve gotten more careful not to exceed the 1200 which is easy for me to do because my favorite foods all have loads of calcium in them. 🙂 When I had my recent bloodwork it was before I started Tymlos.

I see a rheumatologist. He’s a fantastic doctor and an osteoporosis specialist. He has indicated to me that 40mcg is a therapeutic dose, and everyone’s tolerance is different, but I’m the type of person who would rather take the highest tolerable dose. I will most likely try 50mcg to see if I can live with it and then tell him and see what he says. If I feel the same as I do on 40, and it won’t impact my calcium levels, I would want to increase. It’s only been 2 weeks, so I’m very glad to have adjusted downward, which eliminated the really bad effects of the full dose. The full 80mcg is hard for those of us who need to allow our bodies to get used to it.

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@jmla if you don’t mind, could you share some of the food that contains high calcium that you eat on a daily basis?

Also, have you and your doctor discussed what to do after tymlos? It seems a popular one is Reclast. If your doctor prefers a different one, do you mind sharing the reason behind his choice?

Thanks a lot!

REPLY
1 reply
windyshores | @windyshores | Dec 5, 2023
In reply to @jmla "I appreciate this information. I don’t have heart issues or problems with my parathyroid. I don’t..." + (show)
@jmla

I appreciate this information. I don’t have heart issues or problems with my parathyroid. I don’t take any calcium supplements as I get my 1200 mg in my food. I’ve gotten more careful not to exceed the 1200 which is easy for me to do because my favorite foods all have loads of calcium in them. 🙂 When I had my recent bloodwork it was before I started Tymlos.

I see a rheumatologist. He’s a fantastic doctor and an osteoporosis specialist. He has indicated to me that 40mcg is a therapeutic dose, and everyone’s tolerance is different, but I’m the type of person who would rather take the highest tolerable dose. I will most likely try 50mcg to see if I can live with it and then tell him and see what he says. If I feel the same as I do on 40, and it won’t impact my calcium levels, I would want to increase. It’s only been 2 weeks, so I’m very glad to have adjusted downward, which eliminated the really bad effects of the full dose. The full 80mcg is hard for those of us who need to allow our bodies to get used to it.

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@jmla I have only done the full dose a few times in 2+ years. It is a mystery why I can tolerate (sometimes) 7 clicks but not 8! I eventually went back and forth between 6 and 7 depending on what I had to do on a certain day, but it took awhile to get there!

REPLY
1 reply
candy209 | @candy209 | Dec 5, 2023
In reply to @windyshores "My calcium is also high normal but my doc was not concerned. I take 800mg calcium..." + (show)
@windyshores

My calcium is also high normal but my doc was not concerned. I take 800mg calcium rather than the suggested 1200mg. I can't eat dairy.

Can you reduce your calcium intake?

I believe Tymlos' increase in calcium levels is transient. It matters when you have your blood tested. Don't take Tymlos before hand. And don't take any calcium 24-48 hours before the blood test. That is what I was told.

I would not expect to avoid all side effects, as you know: tolerable means different things to different people. It sounds to me like your doc is very cautious and conservative, which can be good or bad! I personally kept pushing my dose up as I was able and my calcium levels did not change.

Is an endocrinologist treating you or a PCP? Do you have any heart issues or issues with electrolytes? Is your parathyroid okay?

Jump to this post

Hi Windyshores
Hope you are doing well.
I am curious about electrolyte issues. I have trouble with that. Can that be an issue with tymlos?

REPLY
1 reply
windyshores | @windyshores | Dec 5, 2023
In reply to @candy209 "Hi Windyshores Hope you are doing well. I am curious about electrolyte issues. I have trouble..." + (show)
@candy209

Hi Windyshores
Hope you are doing well.
I am curious about electrolyte issues. I have trouble with that. Can that be an issue with tymlos?

Jump to this post

Tymlos can raise calcium levels temporarily but I don't know how common that is. My calcium levels are always high normal and I haven't had any problems. All my electrolytes test fine with Tymlos.

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