Titration with Tymlos?

Posted by pgn @pgn, Aug 30, 2024

I’ve recently been prescribed 80mg doses of Tymlos. I’ve been reading and have had a few bad reactions to other drugs (I’ve had Lupus since I was 62 and am now 73 ). After reading on this site I’ve recognized that some people have “built up” slowly to a full dose. They’ve started with a lower dose by clicks in the dosing pen. I asked my rheumatologist about trying this and she indicated that the manufacture of Tim Los indicated, but that wasn’t possible to do. Does anyone have any comments on this? Has anyone tried using the dosing pen in that manner? I think I’d feel more comfortable, easing onto the medication rather than taking the full dose. Thanks for your thoughts.

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

Profile picture for idlehands @idlehands

njx58, Pretty good instructions. You should cut and paste them and keep them handy on your desktop, cuz it seems like every few weeks someone gets told they need Tymlos and has the same dosing concerns 🙌

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I think people need to learn how to search. All of these issues have been discussed many times, be it Tymlos dosing or side effects or Reclast or Prolia or whatever. MANY times. 🙂 There are a lot of good threads if one just looks for them.

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Profile picture for harryboy7 @harryboy7

I have read a lot about Tymlos. Several people on this support group talked about one click, 2 clicks....and so on. Talking about doing less of the drug and then working up to the ordered dose.
I really like this idea. I am a retired hospital RN. We did this often, especially with some of the IV drugs we did.
I just got my first shipment of Tmylos. I have not started yet. My dose is 80mcg. It is set for that dose. I talked to Tymlos on the phone. They said you can't do that. I am curious about the people who do this.
Also they say the injection spot is only on the belly. There are several SQ injections site. Tymlos says only the belly for the shots. If we are giving daily shots on the belly...My belly will be a wreck. Feed back? Thanks Robin

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I think a lot of folks join the chats because they’ve been diagnosed but given inadequate info, and they’re anxious and maybe panicky. Broken bones are a scary prospect and compromise people’s ability to think logically about embarking on a journey that involves injecting yourself everyday, and costs thousands of dollars a month for a couple years. When my orthopedist said ‘You have osteoporosis and the best treatment is a med you take everyday by injecting it into your belly’, I said I can’t do that what’s the plan B? I was terrified at the idea of injecting myself, but once he explained what it was really like, and once I watched some videos of how to do it, it seemed possible, and now I’m into month 8 and it’s easy peasy, but at the start I wasn’t thinking logically and you’d have had trouble convincing me. The Tymlos rep gave me some helpful info, and I’ve benefited from people on this chat who encourage not being rigid in interpreting the ‘rules’. Sometimes that information is readily available if you know how to find it, and sometimes it helps to have someone point the way to it. Like it or not new readers will continue to ask what the clicks are all about. And what the side effects are. And how do you find new places to inject day after day. I’m glad you were able to describe it so clearly; hope you’re prepared to do it again😁

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Profile picture for harryboy7 @harryboy7

I have read a lot about Tymlos. Several people on this support group talked about one click, 2 clicks....and so on. Talking about doing less of the drug and then working up to the ordered dose.
I really like this idea. I am a retired hospital RN. We did this often, especially with some of the IV drugs we did.
I just got my first shipment of Tmylos. I have not started yet. My dose is 80mcg. It is set for that dose. I talked to Tymlos on the phone. They said you can't do that. I am curious about the people who do this.
Also they say the injection spot is only on the belly. There are several SQ injections site. Tymlos says only the belly for the shots. If we are giving daily shots on the belly...My belly will be a wreck. Feed back? Thanks Robin

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My doctor had me start with one click and then increase every few days until the full dose was reached. He had me inject into the thigh. It has been 3 1/2 months and so far, so good.

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Profile picture for harryboy7 @harryboy7

I have read a lot about Tymlos. Several people on this support group talked about one click, 2 clicks....and so on. Talking about doing less of the drug and then working up to the ordered dose.
I really like this idea. I am a retired hospital RN. We did this often, especially with some of the IV drugs we did.
I just got my first shipment of Tmylos. I have not started yet. My dose is 80mcg. It is set for that dose. I talked to Tymlos on the phone. They said you can't do that. I am curious about the people who do this.
Also they say the injection spot is only on the belly. There are several SQ injections site. Tymlos says only the belly for the shots. If we are giving daily shots on the belly...My belly will be a wreck. Feed back? Thanks Robin

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I started at the full dose without any issues. My heart rate did increase about 10% for 30 minutes after a dose. I used Tymlos for four months and always injected in my belly. I weigh 145 lbs so am not underweight so maybe that’s why I had no issues.

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Profile picture for njx58 @njx58

The Tymlos people are wrong. The pen is not set to 80. It's set to zero. You have to turn it, "click" it, until the little window reads 80; that is as far as it goes. What they aren't telling you is that each little click equals 10. Eight clicks equals 80. Once you inject, it goes back to zero, and you start over the next day. I've been using Tymlos for 15 months - I can see that pen in my sleep. 🙂

The issue is that only the full dose of 80 was tested, so that is what they are telling you. That doesn't mean a lower dose isn't effective. A number of people here use a lower dose because they can't tolerate 80.

After 15 months, my abdomen is fine. It's not like you can see 400 marks. The needle is very thin. I rotate - I have four areas on each side, and I just alternate left and right.

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@njx58
Just to be clear, 80 mcg was not the only dose tested. In the earlier studies, they were all tested. There is an increased efficacy with each dose increment. After six months, 80 µg increased bone by 4%. 40 µg, the equivalent of four clicks, increased it by almost 3%. 20 µg by just under 2%. Placebo patients lost a percent as expected.

I'm up to 5 clicks.

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Profile picture for harryboy7 @harryboy7

I have read a lot about Tymlos. Several people on this support group talked about one click, 2 clicks....and so on. Talking about doing less of the drug and then working up to the ordered dose.
I really like this idea. I am a retired hospital RN. We did this often, especially with some of the IV drugs we did.
I just got my first shipment of Tmylos. I have not started yet. My dose is 80mcg. It is set for that dose. I talked to Tymlos on the phone. They said you can't do that. I am curious about the people who do this.
Also they say the injection spot is only on the belly. There are several SQ injections site. Tymlos says only the belly for the shots. If we are giving daily shots on the belly...My belly will be a wreck. Feed back? Thanks Robin

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That is what I am doing also. I too am titrating. I am now doing 6 clicks. My back hurts more, and I feel nauseous since doing 6 clicks. I probably will go back to 5 clicks'
I am curious where you got the information about Tymlos and testing with other amounts. I thought I read everything, and even talked with Tymlos. Nevertheless, I still would titrate. It just makes more sense. There has been a lot of talk regarding injection sites, Everything points to the stomach only. There are more SQ injections sites. Not just the belly, I am not sure way that is. Maybe you might have some information. Thanks for your information and your experience.

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Profile picture for njx58 @njx58

I think people need to learn how to search. All of these issues have been discussed many times, be it Tymlos dosing or side effects or Reclast or Prolia or whatever. MANY times. 🙂 There are a lot of good threads if one just looks for them.

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@njx58,
everyone here is searching. That's how they found connect. There are lots of good threads, but nothing compares to an exchange with another individual. There are threads that are not so good--sometimes outdated by research, sometimes just plain inaccurate.

REPLY
Profile picture for harryboy7 @harryboy7

I have read a lot about Tymlos. Several people on this support group talked about one click, 2 clicks....and so on. Talking about doing less of the drug and then working up to the ordered dose.
I really like this idea. I am a retired hospital RN. We did this often, especially with some of the IV drugs we did.
I just got my first shipment of Tmylos. I have not started yet. My dose is 80mcg. It is set for that dose. I talked to Tymlos on the phone. They said you can't do that. I am curious about the people who do this.
Also they say the injection spot is only on the belly. There are several SQ injections site. Tymlos says only the belly for the shots. If we are giving daily shots on the belly...My belly will be a wreck. Feed back? Thanks Robin

Jump to this post

You can indeed titrate Tymlos to allow the body to adjust. I am hypersentivie and started at 4 clicks but I had serious side effects. . I restarted at 2 clicks and started to increase one click every 7-10 days. It took 3 months but I got to full 8 clicks.
Take enough fold of skin to make sure you are injecting into a fat layer.

I had heart palpations that I managed with coconut water ( 3-4 cups a day)
I had servere stomach issues that ended up being managed with a digestive enzyme. PTH receptors are throguhout the body and for some reason the PTH mucked up my pancreatic islets. It was hard to figure out, but I did. We are all differernt. I was able to tolerate the medicine and it did well for my spine but not hip and forearm whcih are more coritcal bone. I am now on evenity to build cortical bone.

Healing thoughts to you and may your path bring you strong healthly bones!

REPLY
Profile picture for harryboy7 @harryboy7

I have read a lot about Tymlos. Several people on this support group talked about one click, 2 clicks....and so on. Talking about doing less of the drug and then working up to the ordered dose.
I really like this idea. I am a retired hospital RN. We did this often, especially with some of the IV drugs we did.
I just got my first shipment of Tmylos. I have not started yet. My dose is 80mcg. It is set for that dose. I talked to Tymlos on the phone. They said you can't do that. I am curious about the people who do this.
Also they say the injection spot is only on the belly. There are several SQ injections site. Tymlos says only the belly for the shots. If we are giving daily shots on the belly...My belly will be a wreck. Feed back? Thanks Robin

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Thank you for the titrating info. My dr did not tell me this; he just said if the side effects remain bad I can just stop and I guess try Forteo or something else. I’d like to try titration. Someone mentioned there is a dot for each click, for a total of 8, but my pen just has arrows that set it to 80. Is this how yours works as well? Thank you anyone for help and info! I’m scared of messing up…

REPLY
Profile picture for harryboy7 @harryboy7

I have read a lot about Tymlos. Several people on this support group talked about one click, 2 clicks....and so on. Talking about doing less of the drug and then working up to the ordered dose.
I really like this idea. I am a retired hospital RN. We did this often, especially with some of the IV drugs we did.
I just got my first shipment of Tmylos. I have not started yet. My dose is 80mcg. It is set for that dose. I talked to Tymlos on the phone. They said you can't do that. I am curious about the people who do this.
Also they say the injection spot is only on the belly. There are several SQ injections site. Tymlos says only the belly for the shots. If we are giving daily shots on the belly...My belly will be a wreck. Feed back? Thanks Robin

Jump to this post

hi lp30, no dots. You have to listen for clicks as you turn the dial. Each click is 10mcg. I hope this works for you. Some refrigerate the pen if titrating because the pen will last longer, I haven't taken Tymlos, but am taking Forteo--another good choice.

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