Has anyone experienced back pain with Tymlos?

Posted by harryboy7 @harryboy7, Sep 25 9:35am

I have started Tymlos recently. So far I am only doing 3 clicks. I know doctors and the Tymlos folks do not want us do that. Also the injections are to be given only in the stomach. There are other sites for subq injections. Tymlos and doctor say only inject into stomach.
Regarding the clicks, I plan to slowly titrate to full dose. My decision. I know a lot of people are doing this.
The main question I posted was back pain. Has anyone experienced that with Tymlos? Thanks

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Profile picture for taraneh64 @taraneh64

@maymore hello. I just started taking Tymlos 5 days ago. On the very first day that I took it, I had that exact same spasm in my lower back. I do have degenerative disc disease of the lumbar/sacral area (wear and tear of the spine from aging). I am 61. But that pain was real. It subsided in 30 mins or so. And also got better in the next few times. I told my Endocrinologist about it and his response was that he had never heard of this reaction from his other patients. Glad to know I was not just imagining it.
I plan on continuing with the med.

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It’s been a month for me and I’m still debating if I should even continue as now I’m experiencing depression too (it is listed as a side effect). I just don’t know what else I can take as I’ve been on all of them and clearly my body is saying no.
I have read that others have had those spasms too.

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Profile picture for loriesco @loriesco

@gently I think I’m understanding that Harry didn’t mean what he wrote and by short handing what he wrote it left it open for misinterpretation. He wrote. “ So far I am only doing 3 clicks. I know doctors and the Tymlos folks do not want us do that. Also the injections are to be given only in the stomach. There are other sites for subq injections. Tymlos and doctor say only inject into stomach.” so in my possible misinterpretation and with your clarification.(I’m presuming you’re having conversation behind what I can read.) that Harry is not suggesting that this is what WE do he’s just declaring it’s what his doctors have him doing and he’s not recommending that is what we do. In fact, TYMLOS does not advocate for stomach only injections, and TYMLOS would take a subordinate role if a qualified doctor recommends titrating for a patient experiencing difficulties for a limited amount of time. I think Harry was just trying to communicate what he was doing so that we could comment on his back pain and that was the only reason he was sharing at all. It’s still disinformation to say that TYMLOS says only injected in the stomach.” I don’t want people to be confused. That’s my only intention.

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@loriesco you have only good intentions and are always quite helpful. Harryboy hasn't communicated with me privately and I was only kidding about the thighs. I hope he laughed.

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Profile picture for gently @gently

@loriesco you have only good intentions and are always quite helpful. Harryboy hasn't communicated with me privately and I was only kidding about the thighs. I hope he laughed.

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@gently I thought you were serious! LOL however after I wrote my last post, I thought his response was defensive. Instead of explaining or elaborating to say it’s personal he used his authority as a nurse. So after much reflection, I think it was somewhere in the middle. I can always apologize. However, it takes two to tango. I think we’re good here and everything that needs to be said has been said so onto the next issue! Thanks for all your grace and wisdom, Terri!

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Profile picture for loriesco @loriesco

@gently I thought you were serious! LOL however after I wrote my last post, I thought his response was defensive. Instead of explaining or elaborating to say it’s personal he used his authority as a nurse. So after much reflection, I think it was somewhere in the middle. I can always apologize. However, it takes two to tango. I think we’re good here and everything that needs to be said has been said so onto the next issue! Thanks for all your grace and wisdom, Terri!

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@loriesco
I might add that triggering back pain with injections in the lower belly is interesting.
Injecting in the thigh causes me to bend my neck less.
Some people on Tymlos comment on the back pain and add that it goes away in a couple of weeks. If the muscle spasms are caused by the increased serum calcium, why would the response go away after a few weeks.
And would adding magnesium before the injection mitigate the spasms.
You're making me laugh with this wisdom businesss,

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Profile picture for gently @gently

@loriesco you have only good intentions and are always quite helpful. Harryboy hasn't communicated with me privately and I was only kidding about the thighs. I hope he laughed.

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I did laugh. Oh by the way, I am female (Harryboy)

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It can often be difficult to make sense of medication inserts. Wording is not always the best and can leave important things up for misinterpretation. Personally, I live with a genetic bleeding disorder called Hemophilia. It is a complex disease with very complex medications. You are born with Hemophilia and I have been entrenched in the terminology all of my life. However, any time I make a medication switch it involves frequent phone, email and in-person education sessions with my providers.

Misinterpretations happen. However, we must try and keep the community guidelines, https://connect.mayoclinic.org/help-center/, in mind when we work together to try and collectively understand a medication and its directions for proper use. We must remain respectful at all times. Disagreements are fine, but mutual respect is a must.

@loriesco, I spent some time on Tymlos' website and looked through their guides on how to use the injection pen. The pdf's I found in their guides, https://www.tymlos.com/taking-tymlos/, all showed the abdomen as the injection site. As I mentioned above, there is so much information to sort through with medications that it could be patients get lost and overlook where it lists other sites. Would you mind sharing where you found the additional information?

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Profile picture for Justin McClanahan, Moderator @JustinMcClanahan

It can often be difficult to make sense of medication inserts. Wording is not always the best and can leave important things up for misinterpretation. Personally, I live with a genetic bleeding disorder called Hemophilia. It is a complex disease with very complex medications. You are born with Hemophilia and I have been entrenched in the terminology all of my life. However, any time I make a medication switch it involves frequent phone, email and in-person education sessions with my providers.

Misinterpretations happen. However, we must try and keep the community guidelines, https://connect.mayoclinic.org/help-center/, in mind when we work together to try and collectively understand a medication and its directions for proper use. We must remain respectful at all times. Disagreements are fine, but mutual respect is a must.

@loriesco, I spent some time on Tymlos' website and looked through their guides on how to use the injection pen. The pdf's I found in their guides, https://www.tymlos.com/taking-tymlos/, all showed the abdomen as the injection site. As I mentioned above, there is so much information to sort through with medications that it could be patients get lost and overlook where it lists other sites. Would you mind sharing where you found the additional information?

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@JustinMcClanahan @harryboy7 @gently @mcconnectnow -
first, let me say my comments were respectful. There was one to Gently which I thought was private. When I realized it was not, I wanted to edit it (after 15 minutes!) but it would not allow. I reached out to Colleen she responded. I take all this very seriously - and I do my research before posting. To Justin: I posted the link where I got the rotation INCLUDING the thighs and underarm -- from TYMLOS! I also did an A1 search confirming. However, when Justin posted his link today it is not only restricted to the Abdomen but the AI search said the opposite of last week's search! I can't find my posts with the original Tymlos link, here, either. Did anyone remove them? That makes me feel kinda paranoid. I did ask Colleen to edit or remove. But it would have been helpful to see if my Tymlos website link was different than Justins. Here is what I think - I think when I started Tymlos a year and a half ago IT WAS what I indicated - thigh and belly rotation. I read the literature, I visited the website and I called the pharmaceutical company. Of course, I followed doctors orders. When I went to look last week my search was to an old cache where I could reaffirm the manufacturers published information. When I clicked on Justin's link this morning, it connected to the newer published info and AI also picked up that algorythem. Here's an 8 page brochure that doesn't even tell you where to inject! https://www.tymlos.com/pdfs/tymlos-patient-brochure.pdf
The website Justin provided says "ONLY" in the abdomen, and the literature with my pens now say "in the abdomen" but doesn't say "only" and this brochure says nothing at all: https://www.tymlos.com/pdfs/tymlos-patient-brochure.pdf
I defended the Tymlos phone providers in my recent conversations but I take it back. I called this morning to ask if they'd changed this situation since I began over a year and a half ago and "Anne" deflected my question in every way, until I got angry and asked for a supervisor. "They will get back to me." I won't hold my breath.
I do think I was RESPECTFUL but definitive in my conversation. Harry's being a nurse had zero to do with my research when beginning the medication. (I was 10 years in university with 4 degrees, I am not senile and know how to understand simple instructions for injections. I obviously know how to read with an almost 4.00 grade point average and had a science education. But, I APOLOGIZE that I am obviously INCORRECT - for the CURRENT circumstance and I stand corrected! I apologize if anyone was offended by my empathic defense. I did look it up first thing. This is just one of those things that must have been different when I started. I wrote to my UC Health Nurse Practitioner but she is out of office until next week. I am concerned now - that IF the protocol did change that no one advised me and it could be a reason why I didn't perform as well as I should have. I also had asked the question in this group if anyone had low statistical outcome because of the Insulin resistance and if they changed meds? No one responded. Okay, best, and thanks for the added communication. Apologies to Harry for the wrong gender comment, too!

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Profile picture for gently @gently

@loriesco
I might add that triggering back pain with injections in the lower belly is interesting.
Injecting in the thigh causes me to bend my neck less.
Some people on Tymlos comment on the back pain and add that it goes away in a couple of weeks. If the muscle spasms are caused by the increased serum calcium, why would the response go away after a few weeks.
And would adding magnesium before the injection mitigate the spasms.
You're making me laugh with this wisdom businesss,

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@gently good, laughing is good! I don't know about magnesium/calcium with the muscle spasms, but I do remember when I was pregnant 38 years ago magnesium and onions helped cramps. But I get a LOT of myomuscular cramps in my lower back from tensing my abdomen. After I exercise it more, OR, stretch it out more, it stops. It happens because my lumbar is fused and the little myo-muscular situation gets easily triggered if I introduce something that uses my little paraspinal muscles, which aren't in shape because they sit "fixed" within the hardware. Others who have degeneration or scoliosis and are older get these cramps commonly as the lumbar muscles fatigue and spasm super easily. One of the other commenters said it resolved after 5 days so that is what it sounds like to me. I have degenerative disc/spine/stenosis/scoliosis, too. I have to be careful when framing my artwork, as I bend and put stress on those little muscles and they go into a spasm.

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Profile picture for maymore @maymore

It’s been a month for me and I’m still debating if I should even continue as now I’m experiencing depression too (it is listed as a side effect). I just don’t know what else I can take as I’ve been on all of them and clearly my body is saying no.
I have read that others have had those spasms too.

Jump to this post

@maymore I hope you will stick with it. A lot of people have problems which "magically" disappear at 2 or 3 months. That was what my team said. They titrated me up after my myriad of problems and indeed, all my symptoms "magically" disappeared after 8 weeks! (I stopped after 1 month, waited one month and then titrated up and by the time I got to 8 clicks EVERY nasty symptom was gone! Also - they changed me from morning to evening injection which helped with everything!

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