More Tymlos Titration Questions

Posted by ccps101 @ccps101, Feb 1 5:06pm

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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Profile picture for michieg @michieg

@truong62 I'm sorry to hear you are having issues getting started with Tymlos. I am 12 months in...have had great results but also had to manage side effects. Just a couple of thoughts that might help... if you keep the pens in the fridge they will last beyond the 30 days. The 30 day clock starts ticking when you bring them to room temp. There are way more 80 mcg daily doses in those pens than 30 days worth, so if you are paying a ton for them this is something to consider! Feel free to check with Tymlos directly on this. Of course they want you to buy one for each every 30 day period, but technically the pens last longer if kept in the fridge!
Make sure you are hydrated when you do the shot? Sounds like you are doing it right before bed. I do that too and find it helps me get past the head rush and any weirdness....just sleep it off! I feel like my blood is really pumping after the shot but feel it more in my head...can hear my heart beat all over! I did the full 80 mcg dose for a good 6-7 months before the muscle weakness and random bone pain got to be too much for me. By then my BTM's (bone turnover markers CTX and P1NP) were great, so I was able to drop down to a lesser dose of 60 mcg's with my doc's OK. My markers stayed high and I was able to get to where I am now with less side effects. I hate to see folks bailing when there are such benefits to be had! My spine density is up 64% and my hips are all up between 14-26% in 12 months. It's an amazing drug and I too hate taking anything pharma but can't argue with these results. Best of luck to you and courage!! (Oh and definitely let me put in a plug for HRT here! Started patch estradiol + pill progesterone 6 mos before the Tymlos and I can't help but think it's partially responsible for my results.) Hang in there!

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@michieg
Your post is so helpful. I started first dose last nite at 3 clicks . I agree hydration is so important. You give me inspiration to not give up although I didnt sleep great, could be more mental but also from getting off Prolia at some time. Glad your tests results were favorable. God Bless.

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Profile picture for cfic @cfic

@michieg
Your post is so helpful. I started first dose last nite at 3 clicks . I agree hydration is so important. You give me inspiration to not give up although I didnt sleep great, could be more mental but also from getting off Prolia at some time. Glad your tests results were favorable. God Bless.

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@cfic So you are transitioning from Prolia to Tymlos? There is info about this specifically in Dr. McCormick’s book “Great Bones”. It’s a wonderful book and I strongly urge you to get it asap and look for the sections discussing therapies etc… Best wishes!

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Profile picture for michieg @michieg

@cfic So you are transitioning from Prolia to Tymlos? There is info about this specifically in Dr. McCormick’s book “Great Bones”. It’s a wonderful book and I strongly urge you to get it asap and look for the sections discussing therapies etc… Best wishes!

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@michieg
Ty I will its horrible transition. If not better soon I just go back on crappy Prolia. Im feeling very down . Can't do much of anything. I am going on Amazon to find book.
Ty sooo much

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Profile picture for michieg @michieg

@cfic So you are transitioning from Prolia to Tymlos? There is info about this specifically in Dr. McCormick’s book “Great Bones”. It’s a wonderful book and I strongly urge you to get it asap and look for the sections discussing therapies etc… Best wishes!

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@michieg
Just ordered it ty so very much. I dont really care for my Rheumatologist she explains very little.
Ty again

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There are concerns following Prolia with Tymlos so please read that section and advocate for yourself as you decide once you are informed. You can always request a second opinion.

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Profile picture for beachesanddreams @beachesanddreams

@michieg Wonderful News about your bone gains!

Question: if you choose to refrigerate the Tymlos, do you have to bring it to room temp before injecting, or can you inject cold?

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@beachesanddreams Inject cold, u can’t even feel the temp at all. Then you can keep it longer than 30 days. That is what I have been doing for 15 months now because some days I have a lot going on and I just don’t feel like doing the 80 and having the faster heartbeat. Seems to me if ppl are taking it out of frig for half an hour it defeats the purpose of cold/using pen longer than 30 days. As far as temp when injecting, sometimes it stings but mostly I don’t feel anything. I think it just depends on if you happen to put it in a more sensitive area by chance.

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I started Tymlos six weeks ago and had read about it causing nausea. One suggestion was to take it just before going to bed so you sleep thru the nausea. I have been doing that and had no issues and don't think I am getting nauseous anyway, and I get nauseous easily. So, maybe try taking it before bed and see how you feel in the morning.

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Profile picture for jennirdh @jennirdh

@beachesanddreams Inject cold, u can’t even feel the temp at all. Then you can keep it longer than 30 days. That is what I have been doing for 15 months now because some days I have a lot going on and I just don’t feel like doing the 80 and having the faster heartbeat. Seems to me if ppl are taking it out of frig for half an hour it defeats the purpose of cold/using pen longer than 30 days. As far as temp when injecting, sometimes it stings but mostly I don’t feel anything. I think it just depends on if you happen to put it in a more sensitive area by chance.

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@jennirdh Thank you for this! 🙏🏼 I’ve bookmarked it.

I love the empowered women here who are taking control of their health and life and doing this their way, and you are one of them. I’m pulling for all of us as we navigate our way to stronger bones and a full, rich life!

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Profile picture for jcoleary @jcoleary

I started Tymlos six weeks ago and had read about it causing nausea. One suggestion was to take it just before going to bed so you sleep thru the nausea. I have been doing that and had no issues and don't think I am getting nauseous anyway, and I get nauseous easily. So, maybe try taking it before bed and see how you feel in the morning.

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@jcoleary So glad to hear you’re doing well on Tymlos!

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Ive been trying Tymlos now for a week 2 units for 3 nites.
3 units for 3 nites, definitely dizzy and fatigued with some huge anxiety.
Well last nite 4 units and woke up felt like I was in an oven, heart palpitations and panic like attack for hours.
I feel like I tried but I can't increase and feel like that again.
Will reach out to MD and likely go back to Prolia from now until im done
Anyone else experienc horrible anxiety and heart palpitations? Ty

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