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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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Since I’ve done full doses since the beginning, I keep it out if the temp in the house is not above 77. And after my 30th day, I discard and begin a new pen. That’s how I’ve always done it. I can understand those that don’t do a full dose can make the pen last longer.
I know after 30 days it’s still working. I’m still getting side effects and I still taste the Chemical in the pen after injecting so I know it’s still working OK I keep mine in the refrigerator at all times.
I have been on Tymlos almost a year and have developed significant pain in my leg and thigh muscles as well as my knees. Walking in the late afternoon and a hot shower before bed helps my muscles relax so I can sleep. I want to endure for the full two years of medication, but it is tough!
@maureent I had bone marker blood tests done at 18 months that showed Tymlos was no longer building bone. It might have stopped even earlier. At 18 months I had gained 20% in spine going from severe to borderline. Maybe you could consider stopping earlier. I did do 2 years but only for maintenance and to delay decisions about follow up because I was having other health problems.
You could do bone markers and maybe a DEXA to see where you are.
Radius Assist, the financial assistance program for Tymlos, only covers 18 months which may say something!
Has anyone had too much calcium in their blood and urine from taking Tymlos? My 24 hour urine test was 338 which is high with a reference range of 35 - 250. I have been trying to eat more foods with a lot of calcium and my osteo wants me to take 500mg of calcium daily. Are we really supposed to ingest 1200 mg of calcium a day while on Tymlos? I think my endo doesn't know how well I eat. I also take Magnesium, Boron and Vitamin K2 Mk7. I now have urinary frequency and urgency, which is worse at night after my shot. Last night I had to get up 5 times to urinate, which is ridiculous.
I cannot eat dairy and took 800mg calcium in supplements. I think this is highly individual.
Did you avoid taking any calcium for 48 hours before the testing?
What was your blood calcium level?
Tymlos raises calcium for a few hours. If you are eating enough calcium in a day, in food, my docs say don't take supplements. It sounds like 1200mg is too much for you.
Tymlos "eats" Vitamin D3 so that is what I increased on Tymlos, to 3,000 units/day, and my D level stayed stable.
Thanks @windyshores. I stopped the calcium supplement 48 hour before the blood test and the calcium result was 95. I didn't stop supplements before the urine test. I am seeing a new endo tomorrow and will discuss this. I want to cut back on the calcium supplement, but would like a doctor's approval.
drsufowler I love my doc but they don't seem to know what level of calcium to take in. Most say to get it from food in my experience. The docs may not know what to recommend due to individual variation, lack of studies, or they just repeat the standard 1200mg for post-menopause. I had good gains with 800mg total calcium daily (in my case supplements only), 3000 untis D3 and 45mcg K. Let us know if you get good info!
Hi Windy. Would you mind sharing the form of Vitamin K you’re taking and the brand? Do you take it all at once?
I just do Nordic Naturals gummies- 1,000 units Dx combined with 45 mcg K2. I have trouble taking a lot of pills. I am sure others will chime in with better brands.