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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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ccps101 | @ccps101 | Mar 7 5:39pm

Just wanted to pop on here today and let people know I have read of two other patients on sites different from this (and non-US) where their doctors have allowed them to continue on 4 clicks. So for anyone with side effects, worth discussing with your doctor.

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ccps101 | @ccps101 | Mar 7 5:42pm
In reply to @cfic "@michieg Your post is so helpful. I started first dose last nite at 3 clicks ...." + (show)
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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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@cfic is there a specific reason you are doing at night? For me it works great in morning, though I MUST eat something first as it makes me hungry. Gives me energy and seems to have a good dampening effect on my autoimmune fatigue.

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ccps101 | @ccps101 | Mar 7 5:43pm
In reply to @jennirdh "@beachesanddreams Inject cold, u can’t even feel the temp at all. Then you can keep it..." + (show)
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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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@jennirdh yes I was the one who made this mistake. Now I just inject cold.

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ccps101 | @ccps101 | Mar 7 5:46pm
In reply to @cfic "Ive been trying Tymlos now for a week 2 units for 3 nites. 3 units for..." + (show)
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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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@cfic ask your doctor if you can just do 4 clicks, or ask if you can ramp up on titrations slower. Some people on here ramped up one click per week. It’s possible that going slower may help, as long as the doctor approves.

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ccps101 | @ccps101 | Mar 7 5:53pm
In reply to @ccps101 "@beachesanddreams yes get it out of fridge 1/2 hour before taking. Otherwise you may get some..." + (show)
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@beachesanddreams yes get it out of fridge 1/2 hour before taking. Otherwise you may get some stinging.

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@ccps101 sorry don’t take out unless you plan to use entire pen in 30 days

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cfic | @cfic | Mar 7 7:05pm
In reply to @ccps101 "@cfic is there a specific reason you are doing at night? For me it works great..." + (show)
Profile picture for ccps101 @ccps101

@cfic is there a specific reason you are doing at night? For me it works great in morning, though I MUST eat something first as it makes me hungry. Gives me energy and seems to have a good dampening effect on my autoimmune fatigue.

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@ccps101
Actually I am so dizzy on a daily basis I was advised to take b4 bed. I feel like a freak of nature as I get every side effect from anything I take. Sadly I finally got up to 4 units and woke up in am with a 4 hour hot flash and heart pounding like crazy. Anyway who knows if its still a side effect of being off Prolia but I threw in the towel and getting back on Prolia. Just really down about being in so much pain ty for asking.

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cfic | @cfic | Mar 7 7:42pm
In reply to @ccps101 "@cfic ask your doctor if you can just do 4 clicks, or ask if you can..." + (show)
Profile picture for ccps101 @ccps101

@cfic ask your doctor if you can just do 4 clicks, or ask if you can ramp up on titrations slower. Some people on here ramped up one click per week. It’s possible that going slower may help, as long as the doctor approves.

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@ccps101
Wow ty. I guess I need a better Rheumatologist. Funny there was a day or 2 that I was feeling better. I see her Tuesday and am going to ask. I learn more from this website than from her. I hate Prolia it gave me aches and pains been on it for years. So much more guidance is needed on theses drugs that we dont always get.
Ty so much , so appreciate the support

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