Have you used alternative dosages for Tymlos or Forteo?

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.

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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!

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