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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I have been on a full 80 dose of Tymlos since May 2022. At the time my endocrinologist warned I might hexperience joint/bone pain. Fortunately I did not have any major problems.

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No weakness here over two years of Tymlos. Fatigue, yes.

The benefits are for the future. While on Tymlos I had tolerable side effects in the context of avoiding future fractures. Everyone is different!

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@drsuefowler

I am on 2 clicks of Tymlos and my endocrinologist is letting me stay at this level. The way it works is pushing up the parathyroid hormone briefly. I have been on it for 3 weeks. I have some dizziness, imbalance, orthodontic hypotension, but these are tolerable. My concern is the muscle weakness I am feeling with ankle and hip pain on my left side. I do not want to lose my ability to walk. It seems that it is counterproductive to lose mobility when that is what is needed for bone strength. Of course, I don't know if the muscle weakness is from the medicine. Has anybody else had muscle weakness with Tymlos?

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How do you get to two clicks? The directions say turn it to 80.

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@redhead01

How do you get to two clicks? The directions say turn it to 80.

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It takes 8 clicks to get to 80mcg, so I just click it twice for 20mcg. There are several people on this website working their way up to 80. Some stop way before that at a lower dose. I may try to increase it in the future.

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@drsuefowler

I am on 2 clicks of Tymlos and my endocrinologist is letting me stay at this level. The way it works is pushing up the parathyroid hormone briefly. I have been on it for 3 weeks. I have some dizziness, imbalance, orthodontic hypotension, but these are tolerable. My concern is the muscle weakness I am feeling with ankle and hip pain on my left side. I do not want to lose my ability to walk. It seems that it is counterproductive to lose mobility when that is what is needed for bone strength. Of course, I don't know if the muscle weakness is from the medicine. Has anybody else had muscle weakness with Tymlos?

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What is "orthodontic hypotension"?

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Orthostatic hypotension is when your blood pressure drops from getting up quickly from lying or sitting.

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I'm haven't had the back pain, but I've experienced heart palpitations as well as pounding in my left ear. I've just stopped using tymlos and I've got a call into my dr. to discuss what to do. It's been 2 days since I stopped tymlos, my symptoms have diminished but not totally. Has anyone else experienced this?

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@aladdin1

Hi,
Yesterday I took my third shot of Tymlos. I had severe back pain for 5-10 mins. Has anyone else had this issue? Should I stop taking it?
I am 56 years old and have a good tolerance for pain, but last night was unbearable.
Thanks for any thoughts.

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I’m on my 2nd moth. About 7-9 minutes after I take my shot I start with severe back spasms that go from my lower back to the top of my spine. I get a severe headache as well. This last about 15 minutes. I’ve take 1500 mg of Robaxin 30 minutes before hoping it would help but it doesn’t so I quit taking Robaxin. I just curl up into a ball and try to take deep breaths as I said it only last about 15-20 minutes. If it starts lasting longer 45-60 minutes then I’m going to see if there is something else my doctor can recommend to ease the pain.

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Maybe you could both try going down on the dose for awhile. Worth a try.

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Hello all…this journey with osteo meds is quite an adventure. I’ve been on Tymlos since June of 22. I can say I’ve never done more research on a medication as I have with this one. It took me 2 years to finally decide on Tymlos because my dexa numbers were pretty bleak and as a very active person, my endo and rheumatologist both said it was imperative to be on a bone building med or I’d be in a wheelchair at some point. What I have experienced at 8 clicks (from the beginning) have been the typical rise in heart rate, (switching to bedtime injections helped that), occasional nausea, bone discomfort and more recently additional stomach fat. I have had x-rays and MRIs for ankle and feet pain that only started about 5 months ago. I do have some arthritis and narrowing between the joints but (after reading posts about ankle and leg pain) I think Tymlos might exacerbate the discomfort. But, as of Nov, my dexa scan showed an 11% improvement in my spine so I’m satisfied that I’ve tolerated the minor side effects for the gains.
In July I’ll have to switch to another med and I’m not at all looking forward to that. I’d love to stay on Tymlos, maybe at lower clicks but not certain that’s an option. Don’t want Prolia, and Reclast is a bit scary as well. I don’t like any option that is a 6 month injection because if the side effects are prolonged I can’t just stop. With a daily med, I can stop. Fosamax is not an option because of digestive issues. So, I’ll do as much research as possible on these other options and then take the plunge into another unknown.
Stay positive and be an advocate for your body. Although our doctors make recommendations they think are the best for us, we need to make the final decision. I find, because I’ve done so much research on Tymlos, my doc doesn’t always have the most recent updated info. Be invoked in your medical care.

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