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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’m on it almost 38 days now. My legs and other parts of my body feel stronger than before. But I’m still having some side effects. I’ll watch and see if these side effects continue, and then decide whether I can continue or not.
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2 Reactions@loriesco the side effects stopped after 2-3 months? Good for you
I am praying the side effects that I am having right now will stop after 2 months. I am on it about 39 days now
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1 Reaction@truong62 they had all said it was like "magic." Indeed, it was. I had to stop a year later and when I started again there were only side effects for a couple days. I think our bodies adjust to the medicine. The Reclast infusion was a bear though. but I was right out of 2 spine surgeries. They should have had me wait. Also, there were things to do like flush liquids and take tylenol and slow the infusion down, and give a lower dose. Testing now shows they can give a lower dose with no negative impact!
Good luck. I hope you stay on it and it works for you!
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2 ReactionsHas anyone had the horrible experience of getting off Prolia not knowing b4 hand what to expect and then use Tymlos? Its been 3 months since I was supposed to get Prolia shot ( dec) when my rheumatologist said how about try Tymlos.
I know some have responded to my inquiry , I guess when I titrated way too fast with tymlos not knowing many have gone slow and steady, I dont know if what I felt was still from getting off Prolia or if it was from Tymlos.
I have till tomorrow to decide to try it again and titrated really slow. If I get to a point of bad side effects I stop there for awhile. My feeling is no MD knows what we go through with these meds and I feel like we learn more from oneanother. Im also using a PEMF PAD to try and clear out the osteoclasts that are released into my blood stream from stopping Prolia.
So now the vote is on the table lol
Prolia or Tymlos....any feedback is so helpful.
@cfic also might want to talk further with doctors to ensure these issues you are having can be fully narrowed down to Tymlos and not something else you are taking or have as a condition. I have an autoimmune condition that causes bone pain as a norm so I honestly probably wouldn’t know if Tymlos was adding to that since been living with bone pain for over 15 years anyway.
As you know, many people here titrated slowly.
Good luck
@mandie4712 just a reminder that for many people the side effects are NOT bad.
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1 Reaction@ccps101
Ty so much, yes for me too having an autoimmune disease with potential pain you are totally correct. Ty again so very much. You give me confidence and hope.
@windyshores
I’m not sure what to do. I’ve been injecting.Tymlos for about two months. I have red rash that looks like hives and itches at times, upper abdominal pain, fatigue, and dizziness. Also, my hands are swollen and peeling.; fingers and palms. Prilosec has similar side effects and so I have stopped this because I woke up with swollen face and a rash on my face. I also read that it takes a while for Prilosec to get out of your system. I don’t want to stop. Tymlos because I had three fractures in the last year after having a hip replacement. Anybody else have a her abdominal pain rash, swelling and peeling skin?
Puccini, hi.
Rash and hand swelling were signaled in the clinical trials of Tymlos and thought to be an allergic reaction that may go away with time. I wonder if the peeling is because of the swelling.
Upper abdominal pain is (probably, usually) hypercalcemia. The endocrinologist I see thinks that the fatigue and the dizziness are from hypercalcemia.
For the first four hours after the injection we are hypercalcemic because that is the way the medication works. You can reduce the dizziness by taking a little salt, a little caffeine and fluids before the injection. Tymlos draws calcium from the digestive tract, from the bones and back from the kidneys. All this calcium in your bloodstream expands the blood vessels, which drops your blood pressure causing dizziness and fatigue. Salt and caffeine constricts your blood vessels lessening the drop in blood pressure. Anyway, you might try it that way. If you take your daily calcium 4 hours after the injection, you may lessen the amount causing abdominal pain.
If the facial swelling is caused by the Tymlos there is a caution about contacting your doctor right away.
Windyshores hasn't been on site for a while, I'm so grateful for the knowledge from her posts that I sometime try to echo her advice.
She would say carefully that she was able to manage Tymlos by starting at a low dose and advancing slowly when she was without side effects. It is possible to stop for a day and begin again. Her doctors offer their patients that option now, because of her successful experiment.
I hope you get experienced answers because mine is vicarious.
I'm on Forteo.
Best wishes