More Tymlos Titration Questions
So just started Tymlos. I’m doing titration. Started with 2, fine. It actually just made me feel like I had an extra dose of my low dose Prednisone and almost exactly same side “effects”, which are not much—for me, just like having an espresso or something. Pred jump starts and this just felt the same. Actually feel like I also got an extra dose of anti-inflammatory bang from it which was great!
So I do NOT want to rush going up, but obviously want to continue to add. How fast did you all go up? I’m inclined to try 3 clicks tomorrow but by the same token do not want to go from the great experience I had today and letting my body adjust (not unlike Pred).
Experiences?
TIA
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I started the full dose of Tymlos a couple of months ago and couldn't tolerate it: bad nausea, overwhelming vertigo, basically passed out. I waited till Jan. 5 to begin again at 2 clicks. Every 7 days or so I'll add another click. The arc of adjustment has been pretty consistent. I am now up to 5 clicks. I inject in the morning, notice the weakness, slight headache comes and goes, slight nausea early in the process. After 3 or 4 hours I start to feel 'normal'. I am going to stay on the 5 clicks for a few more days past the week as I have some things I am doing and don't want to negotiate another adjustment right now. I am still getting benefit. I feel like I have time to live with this drug so it can be on my body's terms! I am 65, 5'1, 118 lbs (gained some lbs as I am eating more and building muscle-also getting more belly fat....)
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2 ReactionsIt’s taken me less than a week to get up to 4, I will start 5 this weekend and keep going if I can. I, too, have some things going on this week so don’t want to push it. One thing I have found that helps me is eating first! Several of you talk about nausea, I don’t get that but it makes me hungry if I inject without having some small amount of food first. I have to eat some yogurt when I take my Pred first thing in the morning and found if I add like a small cup of cereal that helps with the Tymlos. Am doing both early morning now. Then I have breakfast and hour or two later.
And I am all in favor of titration, especially for those of us who are small. I read somewhere that even 4 clicks you’re getting a therapeutic dose. Full dose may have been the original study on the “average” person weight and height which is quite different from much smaller people.
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1 Reaction@jennirdh Re: the clicks…my thought exactly. I’m glad increasing gradually worked for you, I really am.
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2 ReactionsSounds like this is something that you need to ask your doctor rather than relying on other's experiences.
Your doctor will know your history best and be best able to answer your concerns.
I hope all goes well for you.
I did. Titration worked great, took less than 2 weeks to get up. Docs are happy, proof will be in the pudding. Rheumy doing blood work every 3 months until next Dexa, so will know more when I see her in April. So far, I don’t want to go off it. Seems to have really helped with my autoimmune conditions, doc mentioned there is some indication it has a specific anti inflammatory path.
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1 Reaction@ccps101 I asked my rheumy if that magical rainbow unicorn medicine existed, a drug for both osteoporosis and inflammation, and she said no. But no matter…I’m glad you’re doing so well!
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2 Reactions@beachesanddreams LOL, what we all wish for. But I have to say the Tymlos definitely feels like it has an anti inflammatory effect for me. I have read others elsewhere say the same. No cure all but for me it’s helping with at least one of my three AI conditions . One day I had to delay the shot and I was literally craving it! So lucky I suppose.
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2 ReactionsHi I'm m wondering how do you adjust the dosage. When I have bad side effects and ask to lower the dose then she said:
Tymlos pens only come in one fixed dose: 80 mcg.
- Patients cannot adjust the “clicks” themselves the way some other injectable medications allow.
- If someone is having strong side effects, the only adjustment option is:
take the full 80 mcg every other day for about one week, then return to daily dosing.
Meaning
- i cannot lower the dose.
- But i can reduce the frequency temporarily to help my body adjust
I am planning to follow her advise and see what happens. Please 🙏 🤲 for me. Thx
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1 Reaction@ccps101
Lucky you
@truong62 Do you have the pen yet? I spoke to a patient representative for Tymlos two weeks ago and she told me the pen allows for an adjustable dose.
To be clear, I ordered it last week but haven’t received it yet. That’s why I asked if you have it yet, because I don’t at the moment.
I just watched a video on the Tymlos website, and the pen appears to allow for an adjustable dose.
I don’t know if this helps, but you can visit the Tymlos website to see for yourself.
Wishing you good luck and strong bones!