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Is your doctor comfortable/willing to support reduced doses of Tymlos?
For those of you, whose doctors are supportive with allowing reduced doses/clicks of Tymlos, are you able/willimg to post the name of your doctor and his/her group or hospital name? My health provider is pushing back and is very reluctant to refill my Tymlos prescription, because reduced doses are not FDA approved and there is no released data on effectiveness for partial doses. I'm continuing to struggle with side effects, despite a lower dose for the past 6 weeks. My provider was not aware that the pen could be adjusted to lower doses, until I mentioned that option, after struggling for 3 weeks at a full dose. I'm just trying to get an idea if there's quite a few providers out there that really do support reduced doses. And do you and your doctor jointly determine the partial dose you are going to use or is that decision left to you alone? Any input would better help me to understand how widespread of a practice the reduced doses might be. Thank you!
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If your doctor had ordered bone marker tests, he/she could see if the lower dose is still effective.
Honestly, I'd just do it myself because if I can't tolerate the full dose, what am I going to do? I'll take my chances with a half dose.
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5 Reactions@njx58
Thank you so much for this honest report. I really need help starting tymlos and I do want to start at a low dose. My doctor says there are no clicks on the pen ! Is this true? I want to start at two clicks. I think that is better than nothing. Please help me. I have had bad reactions to other medications so I am cautious. I am a nurse so I will be careful, I just want guidance on how to start !
Thank you so much !!!
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1 Reaction@njx58 I just do not want to be in a position where I have to lie to my provider. Before doing that, I would rather find a new one. Other than not being comfortable with the lower dose, the provider is excellent. Without her on board, I obviously can't get refills through her. Unfortunate.
@hlp123 The Tymlos pen DOES have a dial to load/adjust your dose.....8 total clicks = 80 mcg. So, 1 click per 10 mcg. Maybe consider starting at half a dose (40 mcg / 4 clicks) and see how you do??? You can always dial down or dial up. I would recommend you don't be in a rush to increase too quickly, if you are sensitive like I am.
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3 Reactions@cathyf31
Thank you so much for this information !
I really appreciate it.
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1 ReactionI just started 3 days ago at 2 clicks. That went ok so today I just went to 3. I told my doctor who is an endocrinologist at Cedars Sinai in Los Angeles that this was my plan and she was supportive. She said she had other patients who take less also. I am not clear whether they titrated up to full dose or they stopped at lower dose. In any event, I don't care. I have a serious heart condition and atrial fibrillation, so the only way I was willing to try the medication at all was to start out slow and see how it went. I was not going to start big and wind up in the hospital or have a stroke. My BP is already very low and my heart condition is very sensitive to a drop in BP so I was not going to mess around.
I will stay at 3 for a few days and see how it goes, and if that is well tolerated, I will go to 4 clicks. And so on until I either reach a full dose or don't. And then I will report to my doctor. I also have a rheumatologist who is monitoring my osteoporosis and I told her the same. This was my plan. Neither one fought back. I had to consult with multiple cardiologists and my EP before I even agreed that Tymlos was possible for me, so I am exercising extreme caution. I did recently have a humerus fracture which required ORIF surgery and lots of hardware, and have had relatively recent foot fractures along with one fibula, so I am clearly in need of some support even though my numbers are not too bad.
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2 Reactions@cynaburst Thank you for sharing. So very sorry to hear of your journey. Stay strong and best wishes!! 🙏
I Just lower the dose myself waited until my next bone DEXA scan. The full dose was too much for me to handle new scan. Showed a lot of improvement so I’m happy and the doctor said it Was fine after the results came in
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2 ReactionsMy doctor is a rheumatologist in Brooklyn, New York
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1 Reaction@tymlos666 Thank you for sharing. Good luck!!