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T Scores and Tymlos
I recently found my file on my dexa scans since 2003 which was right after chemo and radiation for breast cancer. Began Actonel and took for two years until horrible side effects began and had to stop in 2005. Took nothing else but was very active and took calcium. Here’s my history since and why I question meds. My scan worse after Axtonel.
2003. -3.5. 2005. -3.7. 2008. -3.3. 2012 -3.2. 2017 ‘3.1. 2025. -2.9
Had three fractures in 2025 from lifting. I see my scores have improved over the years but because of fractures they say my osteoporosis is severe. I’m now a young 83 and Tymlos is my on,y option. It gives me such fatigue at low doses and back pain. I have stopped and started three times. I am thinking of just staying at a low dose being windy shores said she did and still had good results. Also I read on here that if you titrate, the pen can last at least 60 days kept in refrigeration. Anyone have any advice, I’ll appreciate it. I stay so confused on this journey.
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Stress101,
titrating is a good idea. And you seem to have all of the information you need,
Sometimes our bodies adjust so that the fatigue lessens and/or goes away after a few weeks on a full dose.
The medication works by flooding your blood with calcium, The high calcium expands your blood vessels and drops your blood pressure which can cause fatigue. Calcium and blood pressure usually return to normal four hours after the injection. You could try the injection at night when fatigue can be advantageous, But it can created a falling hazard if person needs to get up in the night because of the extra hydration.
Tymlos can, but rarely, cause extended hypercalcemia. I think it is in cases of low kidney filtration rates.
I haven't taken Tymlos, but am quite happy on Forteo. Is this one of the medications you have already tried. It is a lower dose of medication than Tymlos.
Will you start at 2. I would and wait a few days inbetween before stepping up. If you have effects step back down for a few days. I think windyshores said she'd gotten to 7.
I think these set doses are a little high for most of us.
Have you spoken with your doctor.
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3 Reactions@gently Thank you for your reply. I have not taken Forteo. May be a reason why. She knows I I titrate through my knowledge I shared with her on here. Many don’t know about it. I know I read one lady on here still had good results only being able to do two and four clicks in seven months. I had gotten up to five last year and then stopped. Shame on me I guess but had too many issues at the time.
Again thank you
Stress101, there isn't any shame in being intelligent. Side effects can mean that a medication is doing more harm than good.
While Tymlos hasn't been clinically trialed at lower doses, I'm certain that even at lower doses it is effective. If your doctor can prescribe Tymlos there isn't any known medical reason that would prevent your use of Forteo. The two medications are quite similar. Forteo is 20mcg. Tymlos is 80mcg.
My concern would be for hypercalcemia with your use of Tymlos. Are you being followed with labs? I don't think you'll need to take so much of a medication that it makes you constantly fatigued.
If you aren't taking vitamin K2-7, you might ask your doctor, though they seldom know about vitamins. Vitamin K is a hormone. K2-7 makes it easier for calcium to latch onto your bone. And makes it more difficult to latch on to soft tissue in the blood vessels and heart. I take it two hours before the injection to make sure it is circulating when all that calcium is.
Were you without symptoms at 40mcgs?
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2 ReactionsAlso pay attention to vitamin D3. My experience with Tymlos is that it made my body use up D3 faster, so I had to take extra just to stay in a normal range. And, many people are deficient in vitamin D to begin with; low levels can cause fatigue. This is especially a problem in winter. Definitely get tested, and if your level is low, take a supplement.
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7 Reactions@njx58 I do take supplements of VIt D 3 at 5000 a day plus Vit B12. Plus my 1200 day calcium. I’m just very sensitive to meds.
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1 Reaction@gently I weekly moved one click a week. Stopped at 4 for spine Dr wondering if was what causing my pain. Didn’t start back for got a serotonin toxicity from a dr prescribed an antidepressant not knowing the Tramadol I was taking for pain had antidepressants drugs too. So my nervous system went in a spital.i had to wait few months to try getting back to tolerate anything. My understanding of forteo is because I has radiationof of breast, it’s questionable for me. I had to tell my pcp about Tramadol. She looked it up and said I was right. Unbelievable
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5 Reactions@stress101, for what it's worth, I had very good results on half a dose, 4 clicks, of Tymlos. I took it before bed, because I couldn't stand the side effects when awake. The problem now is what to take after it. I am trying a low dose of estrogen, Menostar 14 mcg. I don't want to take Prolia or Reclast. I hope you feel better and good luck with your bones.
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2 ReactionsThanks Sue. How long were you on four clicks and did you titrate to four?
Also, what were your side effects? I have had fatigue, eye blurry, back pain and nausea. Didn’t have all this last year when was on it for a month but yet I am now. What were your results and beginning scores. I had fractures, did you? Thanks for your support.