Dosage Adjustments On Tymlos Pen

Sometimes I wonder if these drugs were released before they were ready.
I understand everyone will not get sick, but there are enough people expressing their difficulty with the drugs that it makes me feel like we're somewhat of the guinea pigs going through this. They shouldn't charge us anything.

Thanks so much for sharing! I never thought a doctor would even consider giving a partial dose of infusion. That is a good idea for us folks who are overly sensitive. If I can ever adjust to this Tymlos and stay on it long enough, I will talk to my endo about a test dose of Reclast.

@drsuefowler you could go back to two clicks, as you said, for a few days and then three. I had a hard time with 4 clicks at first and went down to 2, then 3... I can tell you that for me the headache, nausea, vertigo/dizziness etc. went away after two weeks. My doc said that he heard this from others.

For those of us with fractures, the side effects may seem more tolerable because the alternative is worse! But again for me they faded mostly 🙂 Some days no side effects at all and I think it isn't working!!

Thanks so much for your reponse. Now I can hope that the side effects will fade in 2 weeks. It will keep me trying. I am concerned though that some people report hair loss from Tymlos. Have you had a problem with that?

windyshores to the rescue
windyshores | @windyshores | Apr 16 9:52pm
The pen has 8 clicks. Move the dose slowly and you will feel and hear the clicks. You can start as low as two clicks. and my doc was happy with 6 longer term (though I did get to 7 and even 8). Side effects tend to ease at each level, after a week or two. Tymlos has made me a lot stronger so it is worth it to try and stick with it.

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I might add that with each click you get the same amount of PTH 1-34 as one Forteo dose.
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Use a big comb! I have always had some hair loss due to lupus maybe so I cannot say. I would rather lose hair than fracture though. It isn't listed as a side effect. Once I used a big comb instead of fine-toothed I stopped losing hair in the shower 🙂

Good idea! I already lose hair. It would be hard to tell if it's just from getting older or the medicine. I'm still on 2 clicks and still dizzy. My B/P is low, 90/54. My endo said I could I could take any amount? I wonder if 20 mcg might might help my bones. It's got to be better than nothing. I take all the recommended supplements but it's not enough.

My bp is low too. I bought a blood pressure cuff for before and after Tymlos. I started hydrating and eating salty things before hand to raise bp. The dizziness could be from low bp but it is an early side effect too that for me mostly disappeared. I hope you can at least get to 4 clicks eventually. I got to 6 or 7 eventually. I wonder if two clicks is effective...but it can help your body adjust.

Oh also I switched from evening to morning and had fewer side effects. I also found that getting up and out helped. At first I would stay in bed! This is kind of counterintuitive but morning was much better for me. You could play around with timing and activity?

Thanks @windyshores. Are you done with Tymlos? I saw somewhere that you might try Evenity next? I'm going to stay on 2 clicks until I feel that I've adjusted. I was thinking a week. It's only been 3 days on two clicks. It's funny I thought longer until I checked the calendar. Quality of life is important at my age and I want to still be able to do some things. Your input has been so helpful!

I have to admit that even after all this time, there are days when I am a little woozy when I go to morning art class. But when I go, I feel better!

My doc- and my second opinion endo- did not want to prescribe Evenity after Tymlos. They said there is no data and wanted Reclast.

I periodically sent my endo accounts of others doing Evenity after Reclast and he wrote "Thank you for your persistence. We will agree to prescribe Evenity." I thought that was slightly humorous. I talked with him and he says he is not against it but cannot recommend it.

I took a master class more than two years ago with Dr. Lani Simpson who was a well-regarded proponent of natural approaches but was about to go on Tymlos herself. One of the presenters was a patient who did Evenity after Tymlos and had more gains.

My spine went from -3.3 to -2.5 (though it might be -2.6 due to a fracture effect; it is not always certain which vertebrae fractures) , my hip improved but my femur neck is still -3.6 (Form -4.1). I want more progress !

I am nervous like everyone else. There is no opporunity to ramp up and adjust to Evenity! I will try it and if side effects are literally not tolerable (and I will tolerate a lot) then I will do the 20% Reclast and hope to be able to do that.