Have you used alternative dosages for Tymlos or Forteo?

WOW, GREAT NEWS. I will look into that immediately. Thank you so much for the help. This connect resource is just wonderful.

Thank you for that information. I will follow all those steps and hope to get the medication at a decent cost. Your experience is so helpful to me and I thank you for commenting.

Radius Health (Tymlos) told me that in order to get a coupon you have to have commercial insurance from an employer and not Medicare or Medicare Advantage plans. If you're on Medicare you can apply for assistance through their Radius Assist Patient Assistance Program if you are low income. As of this year, your annual income needs to be less than 300% of the Federal Poverty Level. You can Google this and you can find out how much that is for any given year. For two people in a household in 2023, it would have to be less than $59, 160 a year. You will need to fax them your 1099 from the previous years' taxes. They use a formula that's similar to your Adjusted Gross Income to determine your eligibility.
No one told me this....I wish I knew because I applied and was rejected. My income this year is significantly less than last year but they go by the previous year only. I'm going to have to use my savings to pay for this medication. Hope this helps someone. It took me ages to get this info.

Hello. I took the full doses of Tymlos for a month, but had to stop because of the side effects. Two weeks ago, I began taking 40, and 4 days ago increase to 50. Today, I went down to 30mcg, as recommended by my doctor. She think I could eventually tolerate the side effects. But to me, they are unbearable. Pain all over, drop in blood pressure, head ache, stomach pain, and even a heavy feeling on the tip of my tongue. Also intense fatigue. I am trying…

Good evening @saigra. Welcome to Connect and one of the busiest and friendliest support groups, Osteoporosis. Based on your first post, it appears you are struggling with side effects. I am wondering if you know about the "click" pen that comes with Tymlos. It permits you to choose the number of clicks you can handle and then work up as slowly as is necessary. I did have Tymlos for two years without side effects. It worked well and the results were worth the effort.

However, the "click" option was not available when I was introduced to Tymlos. I am wondering if @windyshores might be able to step over here and say hello. She is just finishing two years of Tymlos with the pen click feature. I believe she was able to modify her number of clicks as was necessary.

May you be free of suffering and the causes of suffering.
Chris

I started at 8 clicks for a month but the back pain and headache were not manageable. 2 weeks ago I decreased to 6 clicks and the severe headache is gone. Back pain still persists, at times, but it’s manageable.

I want to let everyone know that my endocrinologist, who is chief of endocrinology at a major hospital, told me that my story about getting on Tymlos gradually has "inspired" him and he is using that strategy with other patients, so we can all feel that this method had the gold seal of approval.

Anyway, I am still going up and down but after almost two years, I am between 7 and 8 clicks. Most of the time in these two years I have gone between 6 and 7. If I had a day with something important to do I might go with 6 clicks. I am trying to do 8 as much as I can these last two months.

Oddly, I find that one day I have strong side effects and the next day, none at all. @saigra I can relate to your list of side effects. I have to say that many of us won't ever have NO side effects but the goal is a therapeutic dose (my doc was happy with 6 clicks) and a level of side effects that is tolerable (and short-lived).

I have low blood pressure even without Tymlos. I hydrate and eat something salty before hand. I keep a blood pressure cuff near my bed and got 85/54 the last time I checked after Tymlos!

I don't know why but my side effects subside more quickly if I get up and out. If I am in bed, and stay there, I feel worse. I take it in the morning because my heart (afib) is calmer then and also when I took it at night I woke up with a headache.

I spent years- since 2007- trying to get on meds. I went to an immunologist to try to get on Forteo and really really could not tolerate it. Even a 20% dose. So I understand that even with a small dose, some may not be able to tolerate Tymlos.

But I have been so so happy and grateful that by ramping up, using a dose that posed reasonable side effects (not bad at all after some time- they do ease!) and going back and forth as needed, I have been able to complete 20 months and at 18 months my spine went from severe osteoporosis to borderline with a 20% gain.

I also did a cancer treatment for 5 years- letrozole. It can seem like the rest of our lives involves dealing with side effects. In the grand scheme of things Tymlos has been benign and with spinal fractures I am happy to be on it.

I wish everyone the best of luck in tolerating it and growing bone!

I’m so grateful to all of you for sharing your experiences. I started Tymlos in October 2022 at the full dose and absolutely could not function with the side effects (racing heart, low blood pressure, back pain, wooziness and headache). After reading these posts I backed down to 4 clicks, then 5, and am going to try for 6 soon. I still feel some effects for about an hour after the injection, but I feel stronger and hopeful for good results.

After 20 months I am finally doing a full dose! Some days I have side effects but some days I don't!!

So glad this method of using Tymlos is helping people. My doc said he is now incorporating it into his practice. Good luck @lyrasmom at getting to 6 clicks. I made a lot of progress with bones at 6-7 clicks.

I started at 8 clicks on June 19th but couldn’t manage the severe headache and back pain. So, I adjusted my dose to 6 clicks for the past 3 weeks and feel better. Decided to try increasing to 7 clicks when I start a new pen on the 18th. Will post an update on 7 clicks.

Saw my hematologist yesterday and, as an aside, was talking about Tymlos side effects. She said that the back pain is related to stimulation of the bone marrow.