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 loriesco @loriesco

@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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@loriesco Maybe this will help. The instructions for prescribers say:

"Administer TYMLOS as a subcutaneous injection into the periumbilical region of the
abdomen. Rotate the site of the injection every day and administer at approximately the same
time every day. Do not administer intravenously or intramuscularly. "
https://radiuspharm.com/wp-content/uploads/tymlos/tymlos-prescribing-information.pdf

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Profile picture for loriesco @loriesco

@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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@loriesco I definitely want too but that depression has hit hard along with insomnia. I'll ask about changing/lowering the dose. That might help.

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Profile picture for njx58 @njx58

@loriesco Maybe this will help. The instructions for prescribers say:

"Administer TYMLOS as a subcutaneous injection into the periumbilical region of the
abdomen. Rotate the site of the injection every day and administer at approximately the same
time every day. Do not administer intravenously or intramuscularly. "
https://radiuspharm.com/wp-content/uploads/tymlos/tymlos-prescribing-information.pdf

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@njx58 thank you for your concern! The issue is: that I received different instructions (from multiple sources and in writing) when I started a year and a half ago. I think we've established that it is now to be done only around the abdomen. thank you!

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Profile picture for maymore @maymore

@loriesco I definitely want too but that depression has hit hard along with insomnia. I'll ask about changing/lowering the dose. That might help.

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@maymore it helped me. The medication is supposed to make you tired. So interesting it gives you insomnia. Switch to the morning if so and yes, titrate slowly helps everyone I've come across. Getting a nice walk in can't hurt! I titratted two increments once a week.

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Yes, I do walk 5 miles everyday and do the vibration plate twice a day and go the gym for strength training three times a week. I’m doing everything humanly possible and it’s still not making a difference. The medication does make me tired and gives me insomnia so I’m a wreck right now.

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Profile picture for harryboy7 @harryboy7

@loriesco Sorry if I came across being negative. I know about other sites to give the shot. I thought only the belly was ridiculous. I too went on google sites. I got a mix of things.
I felt I needed to go the Tylmlos and my Endo for information. I am not saying people are wrong. in what they are doing.

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@harryboy7 there is no problem at this point! I apologize as well. With the information I had I could only see your post as being incorrect and full of misinformation. But I did check it all out and it was ME who had the misinformation and needed to be corrected. It is weird the way this whole thing worked out. I pride myself on having the “right“ information. For a variety of reasons and through no fault of my own, I will say that it was me who is not up-to-date and correct. It may even be that the reason I didn’t respond well enough to the medication is that my team didn’t do the best job on my behalf. Since my nurse practitioner is still out of the office and I won’t see her until October 24. I can’t put the pieces altogether. However, since I could only find information that TYMLOS never tested on various other locations for subq injections It is possible that my low Improvement, maybe due to that. Thank you for being patient with me too!,

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Profile picture for loriesco @loriesco

@harryboy7 there is no problem at this point! I apologize as well. With the information I had I could only see your post as being incorrect and full of misinformation. But I did check it all out and it was ME who had the misinformation and needed to be corrected. It is weird the way this whole thing worked out. I pride myself on having the “right“ information. For a variety of reasons and through no fault of my own, I will say that it was me who is not up-to-date and correct. It may even be that the reason I didn’t respond well enough to the medication is that my team didn’t do the best job on my behalf. Since my nurse practitioner is still out of the office and I won’t see her until October 24. I can’t put the pieces altogether. However, since I could only find information that TYMLOS never tested on various other locations for subq injections It is possible that my low Improvement, maybe due to that. Thank you for being patient with me too!,

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@loriesco You are so sweet. I wasn't upset. I too thought I had the information like you. l feel there is so much more to learn from all the Osteoporosis drugs including Tymlos. When I have called them I was never satisfied with any help. I am like you, SQ injections have other sites besides the stomach. It just doesn't make sense to me that they didn't test on other SQ injection sites. That was a mistake. I hate the idea giving my shot only in my stomach for two years!
You said, maybe because of low improvement was possibly due to using your injection site in your thigh. I think that given your shot in various SQ locations, you are still get the medication.
We are taking a pretty powerful drug for our bones, that have limited information. That doesn't make me very comfortable. But I will continue doing Tymlos in hope my bones get better. If I were to get a serious adverse reaction. I will stop.

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