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 in a similar situation, with similar timing. It sounds like it will be Reclast or Fosamax. I am leaning toward the latter, but we'll see !
I have been on tymlos for 3 weeks and take at night as I take so many other items in the morning and wanted to sleep thru side effects. I have been reading and hearing and I found 1 article from NIH suggesting take tymlos in the morning prior to exercise as the exercise soon after will help build bone quicker? Isn't tymlos in your system 24hrs anyways? I am confused how to move forward? Any thoughts? I will speak to my Dr but guessing he will say it doesn't matter?
The half-life of Tymlos is around an hour. It is not in your system 24 hours a day.
There was some evidence that taking Forteo in the morning had a slight advantage over evening, but I think that is secondary to taking it at a time that minimizes side effects. In other words, do what works best for you. The main thing is to take it.
I also am getting severe muscle spasms in my lower legs, feet and thigh
I took Evenity for a year 2 years ago and I gained new bone and it helped my bones. I tolerated it well except about 9 months in my hip started hurting, but later dexa showed that I had gained bone in my hip. I had a scan 1 year ago and it was good. I just had another dexa and it showed that my neck was now fragile and it never was before. My conclusion is that it stopped working between the 2 dexa's. My Dr. now is putting me on Tymlos daily injections for 2 years. I am going to try starting on the lower dosage, I had breast cancer and was on hormone blocker drugs for 10 years to stop my cancer from recurring, so I am concerned about it being hormonal, and my chemo caused heart problems, so I am concerned about that side effect also.
tkdesign,
My endocrinologist has prescribed Tymlos full dosage daily for 2 years. I do not think this is a wise choice for me. Firstly I weigh 90 lbs and do not have much space to give myself all of these shots. My rheumatologist halfed my dosage pf plaquenil because of my size.
Secondly, I am a triple hormone-sensitive breast cancer survivor, the association of clinical endocrinology does not recommend it because it can promote the growth of occult, disseminated BC cells and cause the BC to recur. and my endo. hasn't even consulted my oncologist. I was on hormone blocker Arimidex for 10 years to stop the cancer from coming back because I am at high risk for it coming back.
third, Herceptin damaged my heart, so I'm afraid Tymlos might make it worse.
That does sound so difficult. I get so mad these drs just prescribe things without taking into consideration your whole medical picture, your weight, general health...they use go by the book handed to them by the drug companies. I'd seek another opinion. You can take Tymlos on a lower dose and work up. I had much fewer side effects starting very low. I would like to see research done on efficacy at lower dosing.
I have taken 6 doses of Tymlos (2 clicks only) I woke up in the middle of the night with chills and nausea. This morning I feel really weak. Also have a cough. Not sure if it is from the Tymlos or virus or covid. Has anyone ever have these symptoms?
Well, chills and nausea are certainly reported side effects of Tymlos, and your body could take 6 days to respond to it. You could try holding the Tymlos for several days or a week and see if you feel OK, then restart it and see what happens. Or you could get checked for a virus or Covid. If it is Covid you probably don't want to wait all that time before getting treated.
I'm new here. On Tymlos since April 11th, worked up to full dose within about a month but had abdominal cramps, so went back one click to 7 clicks. Now I seem to be getting small pink splotches or streaks, a few days in a row; considered sort of a rash, I guess. I just went back to 6 clicks.
My biggest concern now is microscopic blood was found in my urine June 2nd and again July 8th (a bit more second time), and now I have a CT scan scheduled next week. My question is (and I will put this on other topics too):
***Does anyone have experience or know of someone with blood in urine from using Tymlos AND were they asked to stop taking it by their doctor. ***
I have no good other options due to very mild heart condition and gum disease, meaning bisphosphonates really dangerous for me (for osteonecrosis of the jaw). And Prolia seems too dangerous. I hope to stay on Tymlos.
Any thoughts/advice are appreciated - thank you.