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Struggling with Tymlos medicine
Osteoporosis & Bone Health | Last Active: Jan 11 9:58am | Replies (115)Comment receiving replies
@gently and @darla1 I respectfully disagree that Tymlos is not the drug for you, darla1. I really think you might want to try a lower dose before deciding on that.
I could not tolerate Forteo at all and the dose is not adjustable. I even saw an immunologist to try to get on. This was before Tymlos was available.
So everyone is different. But full dose of Tymlos sent me to the ER before I came up with the plan to start with a low dose and ramp up.
I initiated info on starting low, and doing partial doses if necessary, on this forum. My doctor is head of endo at a top hospital and tells me he has incorporated this strategy into his own practice after my success with Tymlos. So many quit after trying a full dose because it is hard to tolerate.
Start at two clicks and move up. You can probably move up quickly (every few days) until you get to 4 clicks, then slower ramping up helps. Even 4 clicks is therapeutic (my doc says and studies show) and over time you can try to get to 6 or 7. The adjustable pen for Tymlos is key.
Many doctors are constrained by the studies done and the directions for use that resulted from the manufacturer. Your doc may not be able to suggest this. But you can do what you prefer to do and tell your doctor what you are doing.
Replies to "@gently and @darla1 I respectfully disagree that Tymlos is not the drug for you, darla1. I..."
I started Tymlos today and suggested to my NP that I begin on 2 clicks. No side effects today and I will ramp up slowly. I am 81 y.o., 5’2” and 121lbs. I don’t tolerate most oral
meds of any type well and was scared to death of Tymlos. But I caught this gradual approach on one of the forums this morning just before my appointment and am ever so grateful!
Honestly speaking, I think it's outrageous that YOU had to come up with the plan to titrate the drug and that the Drs are constrained by the drug companies. The more I read about the entirety of osteoporosis treatment, I'm sickened by how these drugs are being inflicted on trusting patients. More and more my gut tells me to resist.
@windyshores
Hi there. I started tymlos 2 days ago. Was reading about adjustments in this med and the number of clicks to try to lesson horrible side effects. The first dose was full 80mcg.I did not do well. Was very afraid for next day dose. Was in bed all day after first injection. So I went rm to 7 clicks still felt a little dizzy racing heart but after a hour or two I felt much better. Still have a light sick headache. Are daily doses always going to make you feel different? Some days real bad other days mild? I was also told to drink plenty of water before giving injection and stay hydrated all day. I did this the second day and also 7 clicks. I'm thinking did I get all medicine into my body? But my RN scares me by telling me a could be doing more damage if not taking full dose which I don't know if I believe that comment. What do you think? Thanks so much
Marlene
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I appreciate you responding, and will take your advice to heart.
I’m a soldier on kind of person, and don’t want to stop one drug and try another. “If what doesn’t kill you makes you stronger “ is the approach I’m willing to take. My T level is -3.7 so I’m still trying to wrap my head around the disease it self, and to struggle with the medicine on top of that, I’m sure you get it.
If I may ask, what were the sights , the problem you were having that brought you to the ER?
I am a very stubborn woman, and will avoid hospitals to my own detriment thinking I can get through it on my own.
Now with 2 grandkids, I need to heed the warnings my body is telling me.