Can Tymlos side effects appear after over a month on the stuff?
I’ve been taking Tymlos since early January and have been doing just fine—no side effects that I’m aware of except maybe a bit of extra fatigue—even though I started at 80 micrograms a day. Over the past few days, though, I’ve been a bit nauseous for an hour or two after injecting myself, and today I’ve had a touch of diarrhea. There may be no connection whatsoever, but I’m just wondering. Has anybody else had such a great beginning but developed side effects five weeks in?
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I asked for the CXT and P1NP blood tests when I started Tymlos. My endo prescribed the tests so that we can measure progress. My results were P1NP 78 and CTX 519. He thought that those were good results, but I'm sure that at least the 519 is way too high. I am still breaking bones. I recently developed a stress fracture on my forefoot, and I have broken 4 other bones in the last 2 years. I have another Dr appt in April and will ask for the tests again. I have been on 20 mcg of Tymlos for 3 months waiting for insurance approval. Now that it is finally approved, I have taken 37.5 mcg the last two nights. I plan to work up to 40 mcg. My endo was OK with only 20 mcg, but I think I should at least take a half a dose. I want to thank @windyshores for suggesting ramping up the dosage. Otherwise, I wouldn't be taking it at all, because I had horrible side effects from the full 80 mcg dose.
@drsuefowler I hope you can get up to 70mcg or at least 60. I was worried for you with 20mcg! My CTX came down well with 6-7 clicks. We are similar in vulnerability to fractures (I have 7 spinal fractures) and since starting Tymlos haven't had any. I know 40mcg may be therapeutic to some extent but my experience was that I went from not tolerating 40mcg to tolerating 70mcg by ramping up. I was NOT side effect free but very tolerable. Hope you can!
My endo didn’t think I needed it. My Obgyn ordered it.
Good idea. I may ask another doctor to order it. Thanks!!!
@rita I got my PCP to order them after seeing McCormick again. Later I found another endo who does the testing. My main endo doesn't do them and says an entire conference could focus on this issue. He says they don't give enough info to see what is going on in bones. McCormick says they are useful. My second endo seems on the fence but does them,
I have baseline, after Tymlos and after one Evenity. I am not finding these values very helpful nor do they match what I would have expected. For instance Tymlos gave me excellent gains but at 18 months my P1NP was low.
I still rely on a DEXA to see what is happening or has happened. Make sure to fast and do the CTX early in the day. P1NP isn't fasting but should also be done at the same time of day.
Thanks so much @windyshores for your encouragement. I will work on ramping up and see how it goes.
My doctor reluctantly ordered it at the start. However, at month 3 he had retired and my rheumatologist would not order it. I finally talked my pcp into ordering it at month 7 and it was only slightly elevated so I am disappointed. However, given my circumstances, need to continue taking the Tymlos.