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?

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According to Radiological Society of North America, October 15, 2019

Steroid Injections of Hip and Knee May Damage Joints
Researchers recommend adding injection-associated risks to patient consent forms

October 15, 2019
Guermazi
Guermazi
Corticosteroid injections used to treat osteoarthritis pain in the hip and knee may be more dangerous than previously thought, according to a special report published in Radiology.

Osteoarthritis of the hip and knee are common and debilitating joint disorders. Physicians often inject anti-inflammatory corticosteroids into the joint to treat the pain and swelling associated with osteoarthritis. The procedure is widely viewed as safe, and patient consent forms mainly mention the risks of hemorrhage and infection among more rare side effects associated with most needle-based procedures.

However, a recent study led by Ali Guermazi, MD, PhD, professor of radiology and medicine at Boston University School of Medicine, found that corticosteroid injections may be associated with complications that potentially accelerate the destruction of the joint and may hasten the need for total hip and knee replacements.

“We’ve been telling patients that even if these injections don’t relieve your pain, they’re not going to hurt you,” Dr. Guermazi said. “But now we suspect that this is not necessarily the case.”

In a review of existing literature on complications after treatment with corticosteroid injections, Dr. Guermazi and colleagues identified four main adverse findings: accelerated osteoarthritis progression with loss of the joint space, subchondral insufficiency fractures (stress fractures that occur beneath the cartilage), complications from osteonecrosis (death of bone tissue), and rapid joint destruction including bone loss.

Review Suggests Caution with Intra-articular Joint Injections
The researchers recommend careful scrutiny of patients with mild or no osteoarthritis on X-rays who are referred for injections to treat joint pain, especially when the pain is disproportionate to the imaging findings. Prior research has shown that these patients are at risk of developing rapid progressive joint space loss or destructive osteoarthritis after injections.

Physicians may also want to reconsider a planned injection when the patient has acute change in pain not explained by X-rays as some underlying condition affecting joint health may be ongoing, the researchers said. Most importantly, younger patients and patients earlier in the course of the disease need to be told of the potential consequences of a corticosteroid injection before they receive it.

“Physicians do not commonly tell patients about the possibility of joint collapse or subchondral insufficiency fractures that may lead to earlier total hip or knee replacement,” Dr. Guermazi said. “This information should be part of the consent when you inject patients with intra-articular corticosteroids

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@windyshores

Tymlos might help your pain- or not. It helped me. Are you sure that a cortisone shot is the best treatment? What is the cause of your back pain?

Endocrinologists get very worried by the slightest steroid exposure but I am not sure if it is a valid worry. Longer term high dose use, yes, definitely a problem.

Can you try lidocaine injections instead? My docs do that. I also see a PT who does manual therapy (massage) and ultrasound.

I have 7 spinal fractures, scoliosis and both cervical and lumbar stenosis, and spinal cord damage in neck. Tai chi has helped me, when I am able.

I don't know the answer about steroid shot before Tymlos and can't think of a reason why you can't. Do you know of one? What does your doctor say? At the same time, I wonder what the root cause of your pain is and if it can be addressed.

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Thank you for asking. I was doing my routine stretching and felt sudden pain. It was so severe that I thought I got a new fracture. Had MRI done . No fracture. Trying to find right therapist and address my pain.

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Was the MRI done more than 48 hours after the injury? I hope so! My fractures didn't show up at first, but that was x-ray.

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@windyshores

Tymlos might help your pain- or not. It helped me. Are you sure that a cortisone shot is the best treatment? What is the cause of your back pain?

Endocrinologists get very worried by the slightest steroid exposure but I am not sure if it is a valid worry. Longer term high dose use, yes, definitely a problem.

Can you try lidocaine injections instead? My docs do that. I also see a PT who does manual therapy (massage) and ultrasound.

I have 7 spinal fractures, scoliosis and both cervical and lumbar stenosis, and spinal cord damage in neck. Tai chi has helped me, when I am able.

I don't know the answer about steroid shot before Tymlos and can't think of a reason why you can't. Do you know of one? What does your doctor say? At the same time, I wonder what the root cause of your pain is and if it can be addressed.

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You seem very knowledgeable. I have question- my back pain is very persistent for 10 days now. MRI didn’t show a new fracture. Not sure what kind of therapy I should look for? Or I should go to back surgeon? I absolutely can’t bend forward. And this is very scary.

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@sunny65

Thank you for asking. I was doing my routine stretching and felt sudden pain. It was so severe that I thought I got a new fracture. Had MRI done . No fracture. Trying to find right therapist and address my pain.

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I suggest looking at the book Back Mechanic by Stuart McGill. After nearly 50 years of on and off low back/hip spasms and pain I was better in 2-3 days of starting to follow his approach. He helps you identify triggers for back pain and how to avoid those triggers. And much more. Totally worked for me. Not saying my problem was the same as yours but his approach is widely applicable. He has been interviewed many times on youtube and so on but his book really lays it out. BTW a major source of my various muscular-skeletal type problems came from extreme stretching as a teenager.

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@sunny65

You seem very knowledgeable. I have question- my back pain is very persistent for 10 days now. MRI didn’t show a new fracture. Not sure what kind of therapy I should look for? Or I should go to back surgeon? I absolutely can’t bend forward. And this is very scary.

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@sunny65 how soon after your injury did you have the MRI?

What does your PCP say?

It's not that I am knowledgeable, just have a lot of experience with back issues including fracture! And with Tymlos....

Can you go to a good PT? I have found they are the best at figuring out what is going on. Second best is an orthopedist who does not do surgery.

It may get better...my neuro always tells me to wait 6 weeks before pursuing but in the case of pain like this, I hope you can find a good physical therapist. Your PCP can write the prescription.

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@bluebonnet242

Another question. Does anyone use a Tymlos pen where the needle is already attached? When I talked to the doctor’s office and was asking for the smallest needle she said it was attached and I wouldn’t change it out? I mentioned I had not heard of that.

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I recognize that a dr may not know all of the practical details, but if your dr really thought the Tymlos pen had a permanently attached needle that would concern me.

That is pretty basic, and if the dr is not familiar with that detail, what about the info on options needed to help address adverse effects?

I believe Tymlos will say the needle should be a minimum of 5/8" long (I forget the gauge), and will also say to inject in the stomach and won't express an opinion that other locations are OK because that was what was done in their studies.

A typical specialist will be able to judge that (alternating) hip injection is OK. Similarly, my original endo ordered 3/8" needles instead of the minimum 5/8" to avoid some issues I had. (And she certainly knew that the needles were one shot disposables so there is an ability to adjust by switching needles.)

The dr's level of knowledge could become important if you experience side effects. For example, Tymlos doses are adjustable. When someone can't tolerate the full 80 mcg (8 clicks) they might try a lower dose. (See attached pics)

Personally, assuming this was not just a miscommunication, I would look for someone else with current expertise in managing bone disease, particularly with respect to osteo drug options.

Good luck!

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I know from having a kid with type 1 diabetes that absorption is best and fastest in the tummy. Tymlos works by giving a bolus. So tummy is best in my opinion.

That said, I did Evenity in the thigh because absorption is slower and I had less of a reaction...suggested by my allergist.

Just pinch up the belly two inches from naval, stick the needle in, and let go as you inject so you aren't squeezing the medication out. Again, from my experience with insulin!

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@hardingv

I recognize that a dr may not know all of the practical details, but if your dr really thought the Tymlos pen had a permanently attached needle that would concern me.

That is pretty basic, and if the dr is not familiar with that detail, what about the info on options needed to help address adverse effects?

I believe Tymlos will say the needle should be a minimum of 5/8" long (I forget the gauge), and will also say to inject in the stomach and won't express an opinion that other locations are OK because that was what was done in their studies.

A typical specialist will be able to judge that (alternating) hip injection is OK. Similarly, my original endo ordered 3/8" needles instead of the minimum 5/8" to avoid some issues I had. (And she certainly knew that the needles were one shot disposables so there is an ability to adjust by switching needles.)

The dr's level of knowledge could become important if you experience side effects. For example, Tymlos doses are adjustable. When someone can't tolerate the full 80 mcg (8 clicks) they might try a lower dose. (See attached pics)

Personally, assuming this was not just a miscommunication, I would look for someone else with current expertise in managing bone disease, particularly with respect to osteo drug options.

Good luck!

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Thanks you. I didn’t speak to the doctor, I spoke to someone in his office. I’m hoping there was a miscommunication. She sounded very frustrated by my questions. She did tell me it came with the needle but made it sound like it was already attached. When I started asking questions she told me to make an appointment with the doctor.

I am looking for a new doctor, preferably an endo but most do not get very good reviews here, so may try Mayo. With other doctors I can ask questions without an appointment or go through the portal. I can use the Tymlos nurse for questions.

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@windyshores

@sunny65 how soon after your injury did you have the MRI?

What does your PCP say?

It's not that I am knowledgeable, just have a lot of experience with back issues including fracture! And with Tymlos....

Can you go to a good PT? I have found they are the best at figuring out what is going on. Second best is an orthopedist who does not do surgery.

It may get better...my neuro always tells me to wait 6 weeks before pursuing but in the case of pain like this, I hope you can find a good physical therapist. Your PCP can write the prescription.

Jump to this post

I been calling around today and trying to find a PT which has knowledge how to treat people with osteoporosis.
The problem is that I don’t even know how I got injury this time. I guess during routine exercises which was given me from previous therapist. The first time I had an injury in October 2022- I fall in my kitchen and MRI showed fractured vertebrae. I also had a lot of issues with back pain for the last 20 years. Thank you for keeping in touch with me. I appreciate any advice I can get.

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