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Tymlos side effects I've encountered
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 am a physician on tymlos for 6 months. Three months ago, I began having back, knee, shin and ankle pain. Prior to that time, I was extremely active and these symptoms have reduced my activities by about 50%. I have seen a podiatrist, orthopedic surgeon, neurologist, internist and rheumatologist. I do have mild L4 foraminal stenosis and knee chondromalacia, but these pains are more frequent, severe and extensive than the orthopedic changes.
I am considering stopping tymlos for 1 month to see if it is the cause of these symptoms. I would be interested in hearing if others have experienced something similar to this.
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1 Reaction@gwpitt is it possible these are "growing pains." That was suggested to me. For me the pain was worse in those first 6 months when the growth was greatest.
Rather than stop, I would reduce the dose by one or two clicks, meaning over time I mostly did 6 or 7 clicks of the pen. I was amazed how much worse side effects were at the full 8 clicks so I did that only rarely. I still had 20% gain in my spine. Maybe you could try going down rather than stoppint?
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6 ReactionsI have been on Tymlos for seven weeks now. I have started to experience lower back pain and pain in my left hip (I have AVN on that hip). I started on a very low dose (3 clicks) and added a click every three days. At 6 clicks, I started to experience some side effects. I had a few terrible days with nausea, leg cramps, general malaise, and even "hot flashes". At 7, it was a disaster. I had to skip a day and go down to 5 for a few days. I am back at 6 clicks. The first days were not good: nausea, leg cramps, back and hip pain, and, again, the "hot flashes". But I stuck to my treatment, and the effects have gradually subsided. Only mild nausea and feeling a bit tired, especially in the late afternoon. I plan to hang on at 6 a little bit more to see if my body gets used to it completely, and I'll try 7 clicks one more time. Not really looking forward to trying the full 80 mcg. though.
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2 Reactions@mmodestti you ramped up quickly! I had excellent gains doing 6 or 7 clicks the whole time.
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2 ReactionsAnyone experience shakiness with tymlos. My hands do, and never did before. I have dizziness and had awful vertigo soon after I started Tymlos. I take one half dose, due to fatigue, less but still hsve.😑😑
@windyshores Did you experience side effects? How did you manage them?
@mmodestti yes. When I initially did a full dose, I landed in the ER. I had had afib a year before so I cannot say Tymlos was the cause, but side effects like headache, dizziness and nausea were not tolerable.
With 7 spinal fractures I really was determined. That is why I came up with the idea of starting at two clicks and moving up. I really minimized side effects that way. That is me. Everyone is different. Some days I had more, some days I had none at all at 6 or 7 clicks. I have done 8 clicks, the full dose, occasionally and still have side effects at that dose. I would say fatigue is really the only consistent one over time. But if I get up and out, that eases. Fractures have side effects too!
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3 ReactionsWindshores:
That was a very astute point. When you look at the Tymlos literature provided by the company, bone mineral density increases 5.9% (in women) in the first 6 months. It increases to 8.2% after 1 year and 9.2% after 18 months. Although I am male, the data should be fairly close. Also, males seem to have more reported bone pain than females.
My symptoms seem to be slowly improving and I am attributing this to less bone growth and a flattening out of the curve. Reducing the dosage is also a great suggestion.
Thanks for your input.
Gswpitt.
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1 ReactionSo glad it is improving!
I am glad it is improving. It could also be that your body is getting used to the changes taking place and feels the pressure less.