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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@artscaping

Good evening @mspatart. I sure am sorry about your fatigue related to Tymlos. In my experience with 2 years on Tymlos, I do not recall an increase in fatigue. However, fatigue appears to accompany pain, at least for me. It just wears me out. Even today........after an hour of MFR (myofascial relief therapy) and an hour shopping at Costco.....I came home and jumped into bed for a two-hour nap.

However, I do have SFN (small fiber neuropathy) and the pain from that can wear me out rather quickly. Then there is the barometric pressure. Anything below 30.00 can increase pain and expose me to additional fatigue.

I wish there really was an energy treatment. Throw in some natural aging issues and I will be nodding off over in the corner.

May you be safe, protected, and free from inner and outer harm.
Chris

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Thank you for your response. I am sorry you are coping with pain and exhaustion and I totally agree, this is a combination that also drives me to bed for naps. My problem is a failed spinal surgery from a fall in the nursing home...very annoying!! I am trying to rebuild bone so I can have them reset the screws that came loose from the fall. Meanwhile my spine is unstable and pinched nerves cause pain and I too am finding naps are a common need. I think the Tymlos is causing additional fatigue as well. I'm just trying to ride it out but I appreciate hearing from another nap taker. Last week I had to nap in my car during an afternoon of errands because I just couldn't go on. Sometimes it feels like a total cop out but it is the only thing that helps and I thank you for confirming that.

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I’ve been on Tymlos for 16 months and had the typical
side effects (rapid heart rate, headache) so started injecting before bed and that has helped. Over the past few months I’ve noticed my tummy is poochy, bloated and have gained a few lbs. My ankles and sometimes shins hurt, I still am very active (pickleball, hiking, weights, walking) but some days my ankles feel stiff and uncomfortable. My digestion (which has always been a problem is worse. But my dexa scan was improved by 11% in my spine, so I’m happy. I see several posts with ankle pain but anyone with digestive issues or increased fat gain in their tummies? We’re all on this crazy journey but I’d rather deal with some discomfort for bone growth.

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@dooshie

I’ve been on Tymlos for 16 months and had the typical
side effects (rapid heart rate, headache) so started injecting before bed and that has helped. Over the past few months I’ve noticed my tummy is poochy, bloated and have gained a few lbs. My ankles and sometimes shins hurt, I still am very active (pickleball, hiking, weights, walking) but some days my ankles feel stiff and uncomfortable. My digestion (which has always been a problem is worse. But my dexa scan was improved by 11% in my spine, so I’m happy. I see several posts with ankle pain but anyone with digestive issues or increased fat gain in their tummies? We’re all on this crazy journey but I’d rather deal with some discomfort for bone growth.

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A lot of us have mentioned swollen belly (I don't think it is fat, but who knows) and bone pain. For me, with 20% gain in spine, definitely worth it!

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@dooshie

I’ve been on Tymlos for 16 months and had the typical
side effects (rapid heart rate, headache) so started injecting before bed and that has helped. Over the past few months I’ve noticed my tummy is poochy, bloated and have gained a few lbs. My ankles and sometimes shins hurt, I still am very active (pickleball, hiking, weights, walking) but some days my ankles feel stiff and uncomfortable. My digestion (which has always been a problem is worse. But my dexa scan was improved by 11% in my spine, so I’m happy. I see several posts with ankle pain but anyone with digestive issues or increased fat gain in their tummies? We’re all on this crazy journey but I’d rather deal with some discomfort for bone growth.

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I started Tymlos in June and have gained weight, particularly in my belly. It always looks bloated. Also have low back pain

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Do you refrigerate your Tymlos? I know the directions say it’s not necessary after opening, but a friend says she keeps her refrigerated. I’m just curious.
Thank you!

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@diwint

Do you refrigerate your Tymlos? I know the directions say it’s not necessary after opening, but a friend says she keeps her refrigerated. I’m just curious.
Thank you!

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I was told that the pen currently in use can be kept at room temperature, but that if you got more than one at a time, the others should be refrigerated. I just keep mine in the refrigerator anyway.

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@imay

I was told that the pen currently in use can be kept at room temperature, but that if you got more than one at a time, the others should be refrigerated. I just keep mine in the refrigerator anyway.

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Thank you!

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I refrigerate mine and if I go away I bring a cooler with ice pack (not in contact with the Tymlos, which I wrap well in a hand towel).

I do partial doses and refrigerating enables me to use the pen for more than 30 days. The only reason to have it out of the fridge is that supposedly shots hurt more when cold, which I don't feel is true. When traveling I would want to keep temp evenly cool anyway.

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@anniesan

I'm so glad that you were eventually able to tolerate the Tymlos! I think I will start it again at 2 clicks and go up slowly to see how many clicks I can tolerate before getting any side effects from it. Thank you for replying...I feel encouraged to give it one more try.

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Hello, I joined this discussion group in the hope of finding help for my husband. If your still active could you please give a follow up on your hip pain?

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@bdk1110

Hello, I joined this discussion group in the hope of finding help for my husband. If your still active could you please give a follow up on your hip pain?

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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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