First TYMLOS dose completed - 2 year journey begins

Thank you so much for replying. My endocrinologist is hard to reach and he doesn’t want to hear about other stuff going on. I am not even sure how I am getting medication after I be done with sample.( that’s why I am very hesitant to start) . Did you start at full dose or increased it gradually ?

I started at 60 (6 clicks) on the first night and because that went well, I moved to 80 (8 clicks) the next night and ever since. I don’t know if you are in an area with more selection for providers since it would be very helpful if you and a doctor were able to work together on your OP journey. I’m hoping this forum is helping!

Dear Community - I wanted to update this group on my TYMLOS progress after 10 injections at full strength (8 clicks). I have side effects I don't hear others mentioning. I get no immediate reaction, of which I am very grateful, but I do get a dull headache almost immediately followed by a loopy foggy feeling that lasts almost until the next injection, so from 8p - 7p the following evening. It is not improving, so I suspect this is my reaction to manage. I can handle this for sure - I work from home and can manage my activities to avoid driving, etc, but I am hoping if someone else had this, they can rely their experiences and let me know if it improved over time. Thank you!

It seems we are all different in responding to Tymlos injections. I started at the full dose of 8 clicks and am now in my second year with minimal side effects. I sometimes feel my heart racing after an injection. The very first few weeks I had a slight backache, but not since.
I had a bone density test after the first year and it showed such improvement that I knew it was a mistake. I went from -5.1 to -3.7--ha! Impossible. I thought the mistake was from the radiologist reading the test wrong, but talked to Dr. Keith McCormick (he is in MA, but consults with patients all over the country) and he said it was likely from how the technician placed me on the table--something about the grid lines. Anyway, the spine results were worthless, but I did have improvement in the hips and forearm, so it appears to be helping. I continue on Tymlos and am hoping for results I can believe next time.

@esb13 I was just wondering how you are feeling? Have your side effects subsided?

That’s so nice to check in!! I am sooo much better. I realized I wasn’t drinking enough water during the day and as soon as I did, I have been without any symptoms. I walk a lot and wasn’t staying hydrated. I’ve cut way back on my almond milk since I don’t want to get too much calcium so I wasn’t drinking much but black coffee. All good now! Each night I politely leave the room at 8p, inject myself and am back down with everyone by 8:05p. Next weekend I am bringing the pen to a dinner we are invited to so that’ll be my first out of the house injection. I’m at day 22 and next week I’ll get blood calcium checked to be sure that’s staying in range. How are YOU????

I’m so happy you figured out what was wrong and are doing well now! I’m doing well too and am at 7 clicks. Will be moving up to 8 clicks soon! Main side effect is tachycardia, not severe, and sometimes a little dizziness. I feel better either moving around after injection or sitting up in bed, not lying down.

How much calcium are you getting a day? I’m not getting tested for calcium until August.

That’s great you are doing so well!! Good luck at 8 clicks. Keep us posted! I also sit up after and watch mindless TV for an hour or now that weather is so nice, walk the dog after injecting. It’s hard to know exactly how much calcium I was/am getting. A glass of my almond milk has 450mg and I was drinking atleast 3 glasses/day. I need a dairy-free diet sadly, so I always tried to get calcium through the almond milk and my diet is basically plant based so I think there’s a fair amount from those sources too. I never took supplements for calcium and my levels have always been good. I’ve gone down to one glass of almond milk and lots of water. I feel like myself again after the first few weeks. Combination of adjusting to med, decreasing calcium and adding water. Good luck on your blood tests in August. Did you have a baseline P1NP done? That follow up will be in 3 months and hopefully will show early progress. I welcome learning more about your and everyone’s journey! Has anyone not had improvement with p1NP after 3 months?

Thankfully you figured everything out! Since you are feeling so well it sounds like you made the right adjustments. I did do a baseline P1NP and CTX and will redo at 3 months. I’m not sure how accurate they will be since I had fractured about 6 months ago but will retest anyway.

It helps to hear everyone’s story, especially when tweaks are done to make you feel better. I’m learning so much from everyone’s input.

To all today on this thread….. even though I’ll be starting my Forteo journey very soon , hopefully in next week or two , all these comments were helpful to give me some reassurance and comfort to know I can share here and ask questions along the way!!! Many thanks!!!!