Tymlos Titration Scedule?

@bharris202 One other thing. Before I started Tymlos, my doctor did a 24-hour calcium urine test, to make sure I did not have a high level of calcium in my urine. The Tymlos literature explains that TYMLOS can cause some people to have a higher blood calcium level than normal (hypercalcemia) which can increase the risk of kidney stones. The Tymlos safety information says "Tell your healthcare provider if you have nausea, vomiting, constipation, low energy, or
muscle weakness. These may be signs there is too much calcium in your blood."

@njx58 Thank you so much for your response and for sharing this information.

@miya19 Thank you. Yes, my doctor also had me do the 24 hour calcium urine test and everything was within normal ranges. I’ve had kidney stones previously, so I’ll be able to tell if the symptoms start.

I had immediate reactions to my first injection, followed by increasing ones as I continued. This is how my schedule has olayed out so far (presently at 65 total days):

*80 mcg - 3 weeks (until I raised the white flag, due to increasing side effects); moved from AM to PM on Day 4
*40 mcg - 10 days (PM)
*50 mcg - 10 days (PM)
*60 mcg - 15 days (PM, but changed back to AM on Day 13 at 60 mcg, as a last ditched effort to remain at 60 mcg)
*50 mcg - 2 days
*40 mcg - 10 days and presently counting; still having varuing degrees of side effects, so doubtfull I'll be able to increase anytime soon (my provider is reluctant to continue with Tymlos, due to side effects and reduced dose not being FDA-approved, but I have pushed back hard to continue); counting on my body adjusting/tolerating better soon. Good luck!!

@cathyf31 Thanks! I greatly appreciate the schedule. I start Wednesday. Fingers crossed! 🤞🏻

@bharris202 You got this!!!

When considering titration, I was told by my physician friends (who urged me to get to full dosage as quickly as possible) that the key questions to consider were:
1) if I don't get to full dosage, what are the odds that I will do injections for 12 -18 months with no improvement?
2) is there a potential that my Dexa score could get worse, and I will have lost a year to counter the osteo because taking a half dosage of Tymlos means I can't take another osteo drug?
3) Is Forteo an option? There are cases where some people who can't tolerate Tymlos can tolerate Forteo, and vice versa. This was going to be my next course of action if I couldn't tolerate a full dosage of Tymlos.
I don't think there is any definitive answer to any those questions, but they are good issues to discuss with experts.

I started Tymlos a couple of months ago. Day 1 was 20, day 2...40, day 3...60 and day 4... 80. The morning following the 80, I had a severe headache. I continued on that dose for about a week suffering headaches and light-headedness each day. I contacted my doctor and he reduced me to 20 each day for a week. I did okay. He then increased me to 40...every other day. I've tolerated that pretty well with only mild wooziness at times. Did that dose for 2 weeks. He now wants me to do 60 everyday. I didn't make that change and have actually skipped some doses as I was having company for a few days and didn't want side effects to ruin that. The last few days I have had pretty bad lightheadedness throughout a good part of the day with no Tymlos and now wondering if I'm having withdrawals!!...and now anxious I have screwed up!!! I take mine at night. I also would like to know how not getting the full dose impacts my whole treatment plan.

@jbcat26 I’m sorry all that is happening. That sounds rough!

I’m no doctor, so these are just some ideas. Lightheadedness can be a sign of low or high blood pressure. So I recommend if you feel that way to check your blood pressure. If it is low, I recommend hydrating well, maybe even drink something with electrolytes in it…pedialyte or Gatorade. My favorite is Liquid IV powder mixed with water. If your BP is high, eating a banana (potassium brings BP down) can help.

You ramped up quickly on Tymlos. My very limited suggestion would be hydration, hydration, hydration. You might feel better. Headaches are often caused by dehydration.

I took a little longer to ramp up (10 days). Let me know if you want me to send my schedule. I have had some mild side effects but am now at 80mcg with no side effects.

Wow. I'm taking Tymlos 80 since day 1 for my osteoporosis -I'm on day 138.... a little lightheaded at the beginning - no longer. I didn't know one could ease into it! I also take my BP begore/after I take the injection. Don't know IF it's working yet on my bones - DEXA test later this summer.....