Tymlos pro/cons

Good evening @ldj1002, Welcome.......glad to be able to greet you and perhaps relieve your mind a bit about your journey to control osteoporosis. If you don't mind, would you help me understand what borderline severity means to you? Is your diagnosis indicating Osteopenia at this point and do you want to prevent going over the hill into full-blown osteoporosis?

It may help you to know that I recently completed two years of daily Tymlos injections. My day begins at about 9:00 a.m. now that I am retired and trying to manage the reality of SFN -- small-fiber neuropathy. During that time I was also traveling a bit and had to make adjustments based on time zones and flying schedules.

I can assure you that I never had any evidence of side effects with Tymlos. I chose Tymlos more for its affordability when compared to Forteo. The other bone builder, Evenity, was just being introduced. My first experience was with ibandronate (Boniva) a bisphosphonate. My joints and jaws complained unmercifully. I was glad to find Tymlos acceptable without any headaches or dizziness.

Regarding the mention about time to take the medication........I understand. However, I have yet to know of anyone who has made that decision. Perhaps you should see how it goes and then work on the timing with your endocrinologist or other medical specialist.

Good luck to you and I hope everything goes well. Please let me know your decision. I am very interested in following your efforts to preserve your bones.

May you be safe, protected and free from inner and outer harm.
Chris

ldj1002,
both the headaches and blood pressure drops with Tymlos are because of vasodilation. You can mitigate both effects by hydrating before the injection and having something salty. The effect begins quickly after the injection, really withing a minute. If you already have low blood pressure, you may notice loss of balance or lightheadedness. It is good to plan light safe activities for the first four hours after injection. You may not notice anything at all. Some people do take the shot at bedtime, especially if it makes them unsteady.
Tymlos is a really good choice

I’ve been on Tymlos since June. The 1st month I was on the full dose and had unmanageable headaches and low back pain. So, I dialed down to 6 clicks and worked my way back up to 8 clicks. I still have occasional low back pain. As stated the b/p drop, palpitations and headache occur very soon after the injection. I take the medication in the evening to better manage the side effects

I am using Tymlos and I do get the headache and dizziness after my shot, so I do the injection at night. The headache and dizziness last 30-60 minutes, so it really doesn’t bother me much.

I started taking it at night, but switched to mornings. I was waking up with a headache. In the first months I would rest after the shot and even took my blood pressure before and after. But after awhile I found that side effects (which for me lasted maybe 2 hours) eased if I got up and out. I actually found it more tolerable by being active! Everyone is different and you can play around with it.

I ramped up the dose and mostly took 6-7 clicks worth versus the full 8 as I have written before. I had excellent gains. I would actually vary the dose depending on what I had to do that day: 6 clicks for a day with something important or onerous, and 7 the rest of the time. At the very end I did manage a full dose!

Tymlos was the ONLY med I could tolerate and I am so grateful. I am going to try Evenity a few times and then my doc will do a 20% Reclast test dose which I may stick with, due to my sensitivities. Good luck!

I have been on 20 mcg or a quarter of a dose of a Tymlos sample for a couple months. I tried the whole dose last Spring and had horrible side effects. I asked my endo about half a dose and he was fine with that. Later, he said that the way it works by kicking in parathyroid hormone briefly, it may not matter how much I take. I just had my DEXA scan and the results are remarkable. Lower back T-score -2.3, previously -2.9, 8.5% improvement. Left hip T-score -1.7, previously -2.3 11, 6% improvement. Right hip T-score -2.2, previously -2.5, 6.1% improvement. I have been taking Strontium which may have altered the results. I also take red algae calcium, vitamin K2 MK7, Boron, Magnesium, vitamin D3 and Collagen peptides.

I have broken 4 bones in the last year and a half. I asked my endo and his nurse to request insurance prior authorization for Tymlos several times in the last 2 months. I found out yesterday that they never did. Now I'm afraid I will never get insurance approval for Tymlos with my good DEXA results. It is difficult to tell what helped my scores, the Tymlos or the Strontium or both. I am waiting for the results from my CTX and P1NP blood tests.

I am very sensitive to medications and have low blood pressure. I take the Tymlos at night. At first, the dizziness, headache and imbalance lasted all day. Now, I rarely notice it during the day, but of course I'm only on a quarter of a dose. I very much appreciate this website, where I learned that I am not the only one taking less than full dose.

I take Tymlos at night, between 10 and 11 pm. I am often awake for an hour or so after that, but have not noticed any significant side effects.

You might ask your endo to use the prior dxa with the insurance. After their oversight or neglect. If your insurance won't approve you may be eligible for pharmaceutical company help. Usually all they require is a prescription. Will your endo still prescribe now that your numbers have improved. Your results are so good that I don't think it can be the strontium alone. I would maintain the quarter dose. It is interesting that your endo suspects it might not matter how much you take. If the 80 mcg only yields 36mcg bioavailability, maybe the other 44mcg only causes side effects. Best wishes. https://www.tymlos.com/hcp/resources/#:~:text=What%20to%20do%20if%20TYMLOS,who%20cannot%20afford%20their%20medication.

Hi! Thanks for your input.
My T score in L 1-4 is 2.9
2.7 in neck.
I’m glad Tymlos has worked well for you!

Thank you!
This makes me feel better 😊