Titration with Tymlos?
I’ve recently been prescribed 80mg doses of Tymlos. I’ve been reading and have had a few bad reactions to other drugs (I’ve had Lupus since I was 62 and am now 73 ). After reading on this site I’ve recognized that some people have “built up” slowly to a full dose. They’ve started with a lower dose by clicks in the dosing pen. I asked my rheumatologist about trying this and she indicated that the manufacture of Tim Los indicated, but that wasn’t possible to do. Does anyone have any comments on this? Has anyone tried using the dosing pen in that manner? I think I’d feel more comfortable, easing onto the medication rather than taking the full dose. Thanks for your thoughts.
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@pgn, you've come to the only best place to find out exactly how to do this. @windyshores will be checking in with you soon. I think she may be gone already this evening.
@pgn the Tymlos company (Radius) is limited by what studies were done. In my opinion the company needs to do a study on reducing side effects by ramping up, because this idea is no doubt increasing their sales!
Your doctor may feel similarly about following studies. My own doc, who is chair of endocrinology at a major hospital, has started to use this method for patients who have a hard time getting onto medications.
You can do this yourself but two cautions: keep the Tymlos in the refrigerator so it lasts longer, because if you ramp up slowly the pen will last more than 30 days. Don't use it too long but my doctor and pharmacist both said it was okay as long as it stayed in the refrigerator. And you will need extra needles.
I started at full dose, then half dose, and after an afib episode (I already has afib and I doubt Tymlos was the cause) decided to be more cautious and did two clicks of the pen each day for a week, then 3, then 3 and ended up wtih 7 out of 8 clicks long term. I had excellent gains and went from severe to borderline.
This method worked for me but I moved up as fast as I could and also had to realize that side effects will happen regardless. This is not a way to eliminate all side effects but this approach made them more than tolerable for me. Much better than the pain of my fractures!
If you are sensitive to meds or have any medical issues that justify trying to start low, you can just do it. If you are anxious but don't have sensitivity or medical conditions, you could try full dose first. Regardless of what dose you start at, most of us find that the body adjusts and side effects go away (I had a headache for a week).
Because of extreme exhaustion I asked my Dr. if I could scale back on the dosage. My pen says 80 also-but she said it was impossible to do that, so I appreciate your information, Windyshores. Of course, after complaining to the Dr. within a few days my exhaustion did get better. So a big thank you for the people on here that told me to hold on-that it would get better. She did tell me to go off the Tymlos for 2-3 weeks and see if that made a difference. She also said tiredness was not a side effect of Tymlos, but I see other people on here have experienced extreme tiredness too. I am almost a month in, so I did not want to do that and go through the side effects all over again. Although I am still tired the extreme has disappeared, and walking does help in the morning.
Fatigue is definitely a side effect.
I told my doctor about lowering dose and ramping up and he now used it in his practice. Your doctor sounds a little inflexible. People on this forum have posted gains with a half dose. I went from serious osteoporosis to borderline with 6/8- 7/8 of the full dose.
If you can tolerate it now, great! I went up and down a bit and if I had something important to do, I did 6 clicks.