Tymlos side effects I've encountered

Posted by anniesan @anniesan, Oct 2, 2022

Hi. I started Tymlos in February 2022 and about a month after starting it I began experiencing excruciating muscle spasms, esp in upper thighs and feet, neuropathy, as well as debilitating hip, leg, and back pain. My doctor wanted me to try and stay on it for at least a year, but I absolutely could not go on living with the pain I experienced. I stopped taking the Tymlos completely 6 days ago and all my symptoms have subsided. Has anyone else experienced these side effects while on Tymlos?

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

@windyshores

@sarahstuart my doc didn't do any testing to see if it worked, but did test calcium and Vitamin D. Near the end of my treatment I saw Dr. McCormick, who suggested a P1NP test and my PCP ordered if for me.

Jump to this post

I don't believe in lockstep protocol's, BUT on blind faith, I am suppose to spend $2,000*/mo and unless I stomp my feet will not get tested for 48 months.

* some health insurance coverage, but health insurance rates keep going up

REPLY
@sarahstuart

I don't believe in lockstep protocol's, BUT on blind faith, I am suppose to spend $2,000*/mo and unless I stomp my feet will not get tested for 48 months.

* some health insurance coverage, but health insurance rates keep going up

Jump to this post

@sarahstuart can your PCP order the P1NP and CTX? should be 8am or so and fasting according to Dr.McCormick..

REPLY

I'll let you know next week as I have an office visit for surgery clearance. I would rather ask her in person than a computer message 🙂

Now to surgery: A wrist specialist is going to remove arthritic tissue from old wounds. He wants to do much more than that, but I told him that at my age no part of my body is perfect, I just want functional. i.e. turning door knobs brings a gasp, peeling carrots is limited to 2, etc.

REPLY
@sarahstuart

I don't believe in lockstep protocol's, BUT on blind faith, I am suppose to spend $2,000*/mo and unless I stomp my feet will not get tested for 48 months.

* some health insurance coverage, but health insurance rates keep going up

Jump to this post

@sarahstuart , if you have Medicare a Dexa scan can be done sooner than 2 years if it’s being done to determine the effectiveness of treatment. It just needs the correct coding

REPLY
@ymv

@sarahstuart , if you have Medicare a Dexa scan can be done sooner than 2 years if it’s being done to determine the effectiveness of treatment. It just needs the correct coding

Jump to this post

Indeed, I am in my Golden Years! So Golden that I've been removed from a few web sites. I was a little puzzled then it dawned on me that I haven't had my vision tested since the world re-opened. In another 10 days or so, I will have new frames and new lenses. I haven't done correct coding for a few months, but I will talk to the NP about it. thanks, Sarah

REPLY
@windyshores

@sarahstuart can your PCP order the P1NP and CTX? should be 8am or so and fasting according to Dr.McCormick..

Jump to this post

This was my experience when I asked Dr. McCormacks office staff about getting the CTX and P1NP…. I commented that I’ll have my Primary physician order it because I was a bit hesitant to ask my endocrinologist for a test that he likely should’ve ordered but chose not to in my initial work up. Her response was , your Primary can’t interpret the results. I made the call to my endo telling him I was securing a consult and that dr wanted those tests. He seemed fine with that and wrote the order. Mind you he was a Fellow , which means he was practicing but still with some oversight. I would’ve been way more hesitant with an older Dr that had been practicing for years. GOOD LUCK!!

REPLY
@ans

This was my experience when I asked Dr. McCormacks office staff about getting the CTX and P1NP…. I commented that I’ll have my Primary physician order it because I was a bit hesitant to ask my endocrinologist for a test that he likely should’ve ordered but chose not to in my initial work up. Her response was , your Primary can’t interpret the results. I made the call to my endo telling him I was securing a consult and that dr wanted those tests. He seemed fine with that and wrote the order. Mind you he was a Fellow , which means he was practicing but still with some oversight. I would’ve been way more hesitant with an older Dr that had been practicing for years. GOOD LUCK!!

Jump to this post

I asked my PCP NP to order the tests and then Dr. McCormick interpreted them on the phone. I paid him out of pocket. My second opinion endo actually orders, and interprets them, so endos vary on this.

I am seeing my main endo next week and yesterday asked my PCP NP to order them. Endo may dismiss them but I want to know if Tymlos is still working after 22 months.

REPLY
@windyshores

I asked my PCP NP to order the tests and then Dr. McCormick interpreted them on the phone. I paid him out of pocket. My second opinion endo actually orders, and interprets them, so endos vary on this.

I am seeing my main endo next week and yesterday asked my PCP NP to order them. Endo may dismiss them but I want to know if Tymlos is still working after 22 months.

Jump to this post

Please let us know if tymlos is still working for you.

REPLY
@candy209

Please let us know if tymlos is still working for you.

Jump to this post

@candy209 I will!

REPLY

I’ve been on Tymlos about a month at 8 clicks. Up until a week ago I was able to manage the back pain and headaches. This past week the back pain is very bad and bringing me to tears. So. I decided to go down to 6 clicks and see if the back pain improves. Has anyone else had to back down on the dose? If so, how long did you stay at the lower dose before ramping back up?

REPLY
Please sign in or register to post a reply.