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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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feebee1955 | @feebee1955 | May 4 9:55am
In reply to @njx58 "@feebee1955 You won't do longer than 24 months. Taking a lower dose doesn't mean you have..." + (show)
Profile picture for njx58 @njx58

@feebee1955 You won't do longer than 24 months. Taking a lower dose doesn't mean you have to make up for it by taking it for more months. The idea is that a lower dose is still effective.

Try an experiment. Lower the dose to three clicks and see what happens. Let us know.

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@njx58 Thanks, but actually the nurse told me I WOULD have to extend the time taking Tymlos if I lowered the dose! I’m traveling in Europe right now, so with the time change, I switched to giving myself the shot in the morning—barely any back pain, so I’m happy.

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njx58 | @njx58 | May 4 3:52pm
In reply to @feebee1955 "@njx58 Thanks, but actually the nurse told me I WOULD have to extend the time taking..." + (show)
Profile picture for feebee1955 @feebee1955

@njx58 Thanks, but actually the nurse told me I WOULD have to extend the time taking Tymlos if I lowered the dose! I’m traveling in Europe right now, so with the time change, I switched to giving myself the shot in the morning—barely any back pain, so I’m happy.

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@feebee1955 That sounds wrong, I'd have to hear that from a doctor. Also, the insurance company typically covers 24 months maximum for Tymlos. I've seen the form the doctor uses for authorization. One of the questions is if you've already completed 24 months of treatment.

Anyway, glad your morning shot is working!

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feebee1955 | @feebee1955 | May 5 2:45am
In reply to @njx58 "@feebee1955 That sounds wrong, I'd have to hear that from a doctor. Also, the insurance company..." + (show)
Profile picture for njx58 @njx58

@feebee1955 That sounds wrong, I'd have to hear that from a doctor. Also, the insurance company typically covers 24 months maximum for Tymlos. I've seen the form the doctor uses for authorization. One of the questions is if you've already completed 24 months of treatment.

Anyway, glad your morning shot is working!

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@njx58 thank you for the info! I am so unsure about everything and my Endocrinologist, whom I love and have been with for years, does not seem to know too much about the Tymlos experiment!

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CathyF31 | @cathyf31 | May 5 8:29am
In reply to @feebee1955 "@njx58 Thanks, but actually the nurse told me I WOULD have to extend the time taking..." + (show)
Profile picture for feebee1955 @feebee1955

@njx58 Thanks, but actually the nurse told me I WOULD have to extend the time taking Tymlos if I lowered the dose! I’m traveling in Europe right now, so with the time change, I switched to giving myself the shot in the morning—barely any back pain, so I’m happy.

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@feebee1955 I would thoroughly question what that nurse told you. Please have a discussion with your regarding a two-year limit on the use of Tymlos, as what you were told goes against the literature from the manufacturer.

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njx58 | @njx58 | May 5 9:14am
In reply to @cathyf31 "@feebee1955 I would thoroughly question what that nurse told you. Please have a discussion with your..." + (show)
Profile picture for CathyF31 @cathyf31

@feebee1955 I would thoroughly question what that nurse told you. Please have a discussion with your regarding a two-year limit on the use of Tymlos, as what you were told goes against the literature from the manufacturer.

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@cathyf31 Also... the effectiveness of Tymlos generally wanes after the first year.

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feebee1955 | @feebee1955 | May 5 11:15am
In reply to @cathyf31 "@feebee1955 I would thoroughly question what that nurse told you. Please have a discussion with your..." + (show)
Profile picture for CathyF31 @cathyf31

@feebee1955 I would thoroughly question what that nurse told you. Please have a discussion with your regarding a two-year limit on the use of Tymlos, as what you were told goes against the literature from the manufacturer.

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@cathyf31 Thank you, I will.

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pharmacy66 | @pharmacy66 | May 6 7:59am

I had terrible joint pain and stiffness after taking Temlos for 3 months and 3 weeks. I tried to continue taking it, but the joints in my hands, fingers and wrists became so red and swollen than I couldn’t hold a spoon. I couldn’t bend my knees to walk so I stopped the Temlos. I was taking it before back surgery. My Primary Care MD put me on a high dose of prednisone which I continued through my very successful surgery. I have been tapering the prednisone for 8 months now and am finally off of it and am able to tolerate the joint stiffness which is getting better everyday. I also lost a lot of hair, but that has also declined. I am refusing any treatment other than calcium as my gastroenterologist said no to any of the oral meds. I will wait to see what the next bone density scan shows and make a decision then.

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mautaylor | @mautaylor | May 6 2:59pm
In reply to @avidreader7 "Thanks! I'm aware there is a 2 year limit. But I am afraid my doctor will..." + (show)
Profile picture for avidreader7 @avidreader7

Thanks! I'm aware there is a 2 year limit. But I am afraid my doctor will tell me to get off it now, after just a few months. And there is no good option for me (I've been reading up on this the last couple of years).
Blood in urine is a possible side effect, I've read that in a couple of places. I'm just wondering if anybody else has had that and what was advised.
I believe the concern is kidney stones (which I've never had). Though blood in urine could be from bladder infection or something else. But I'm concerned.
I am going to try to get to an endocrinologist here who specializes in postmenopausal osteoporosis and hormone replacement therapy. I have to hope that perhaps the right HRT could be what I can use AFTER I do finish with Tymlos. She's not in my network, so I need special referral but I'm somewhat hopeful my primary care doctor will refer me to her. I just did not think I'd need a back-up plan so soon.
Thank you again. If anybody else can share blood in urine being an issue, I'd appreciate it. I do read a lot here. You are all helpful to each other.

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@avidreader7 I took Tymlos for two years with great results. Because I have a great deal of dentistry that may have to be replaced at any time, the follow up medication was a bit of a challenge.
I finally settled on Boniva which I take once a month. I had tried two other medications in this class before and both made me extremely nauseated. For whatever reasons, I’ve been able to tolerate this medication and , if need be, I can stop for a few weeks then have a dental intervention. . Best of luck to you!

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feebee1955 | @feebee1955 | May 7 12:14pm
In reply to @njx58 "@feebee1955 That sounds wrong, I'd have to hear that from a doctor. Also, the insurance company..." + (show)
Profile picture for njx58 @njx58

@feebee1955 That sounds wrong, I'd have to hear that from a doctor. Also, the insurance company typically covers 24 months maximum for Tymlos. I've seen the form the doctor uses for authorization. One of the questions is if you've already completed 24 months of treatment.

Anyway, glad your morning shot is working!

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@njx58 Thanks again for the info and support! 🤗

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gma1902 | @gma1902 | 4 days ago
In reply to @cbsue45 "I took teriparatide for 6 months when it was replaced with Tymlos. I’ve done 40 days..." + (show)
Profile picture for cbsue45 @cbsue45

I took teriparatide for 6 months when it was replaced with Tymlos. I’ve done 40 days at 80., no break between drugs. On the teriparatide I had cough, tooth pain, a couple episodes of Afib and increasing blood pressure. After the switch to Tymlos my blood pressure continues to climb, still have the cough, ringing in my ears, nervousness, pounding heart after injection and Potassium is high, sodium and chloride are low. I am going to stop for a week just to see if symptoms improve.
Does anyone have thyroid issues? I’m wondering if my thyroid is part of my issue though labs aren’t showing anything.

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@cbsue45 I had afib, and an ablation, but the afib came back. I had tooth pain for few months before the ablation but I could only do one thing at a time. So 4 months after the ablation, and the afib came back, I got the tooth pulled. My afib is gone for 2 months now.
There is a afib/tooth infection problem and solution.

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