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PAUSE on your Tymlos shot if u have flank pain (ask me how I know!)
I had radiating pain on the left side of my lower back (my left flank) a few days ago. I thought I had twisted in an awkward way lifting a 4th of July ice cooler and figured I had slightly injured it that way. It was getting worse as the day went on and I was annoyed with myself for not lifting carefully, so I was determined to at least complete SOME proper self-care for the day and I took my Tymlos shot on time that evening.
As soon as I injected I went through the roof with excruciating pain right at the spot that had been throbbing (a few inches from my kidney)! I hobbled to the toilet shortly after that and had dark, tea-colored (likely blood-tainted) urine and quickly connected the dots that I had developed a kidney stone.
I've had renal colic/PAINFUL spasms ever since and (needless to say) have skipped my shots (and most likely concluded them since I have 20 months under my belt).
My serum calcium has always been normal, but my short-cut prone providers have eschewed bone marker blood work and 24-hr urine tests my whole course of treatment. I imagine if I'd had 24-hr urine tests, we would've discovered I was excreting too much calcium. I did have one tiny stone about 10 years ago when I was going through a super de-hydrated era, but I have a hunch Tymlos (and possibly getting overzealous with trying to get my Vit D number up) is what brewed this up for me while my team and I were being complacent about urine calcium...
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I had a family history of kidney stones, but never had one myself. I informed the NP who started me on Tymlos about it, but she dismissed it. I ended up with a very large stone stuck in my right kidney while on Tymlos. Had surgery for doctor to go in and break it apart and pull it out piece by piece. On top of that, it took 9 months for me to be diagnosed, because the pain wasn't located where the doctors thought it should be in order to be a kidney stone (even a urologist concluded this!). Pain radiates to other locations, doctors! I have no plans to take any osteoporosis meds in the future.
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1 ReactionOh so sorry to hear you had to go thru this Annie! Do you have access to Jason Health labs? If you are in or near one of the 47 states that allow Jason Health to operate you can order basic labs yourself online and pay a discounted retail price. I have been doing this to monitor my labs for VitD, calcium, and bone markers (CTX and P1NP). A basic serum calcium is only $5 but is also included in a comprehensive metabolic panel ($8), and a Vit D 25OH level costs $45, plus they charge an $18 draw fee. You buy the requisition online, then I make an appt and have my blood drawn at Quest and the results show up on my Quest account. I went hypercalcemic in my 8th month on Tymlos for exactly the same reason...overzealous Vit D supplementation. I have been monitoring it myself since. But if you are planning to try to use HRT as your followup to Tymlos you might want to be monitoring your CTX, Vit D, and PTH levels and estrogen levels too... so you can get an idea of where you might be heading ahead of your next DEXA. Just a thought... https://www.jasonhealth.com/ Good luck to you!! M
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1 ReactionI was on Tymlos for 4 months and stopped 2 weeks ago. I also stopped taking calcium and vitamin D supplements. I had pain in my hands and feet with shooting pain up my leg, pain in side. Pounding heart, headaches, restless sleeping, generally feeling bad and tired. As soon as I stopped it, I started to feel better and am doing much better now. The NP did not do any blood work when I reported how I felt. Now she is suggesting taking Forteo. If Tymlos was causing hypercalcemia, I read that Forteo is worse. Does anyone have any suggestions? I feel that I should find a new endocrinologist specialist.