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Tymlos and leg swelling (edema)

Osteoporosis & Bone Health | Last Active: Jul 20 1:51pm | Replies (6)

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@cathyf31 Thank you! I will finish my 3rd Tymlos pen at 4 clicks this month. When I try 5 clicks, the headaches are bad. I am having good P1NP : CTX readings. I too react badly to medications. I prefer Tymlos over Forteo, but was trying to see if other people had these side effects go away with Forteo. I am soooo tired. Not sleepy, exhausted. Tymlos nurse told me I had to throw away the pen at 30 days, even though I have half a pen left, since I do 4 clicks. But they don't even want you to do 4 clicks. I have been throwing away the half-full pen. Are you? I am hoping when I finish Tymlos they have the new medication out that is supposed to be a one time injection. I don't remember the name. I do not want to do anything after Tymlos. I am hoping weight training, diet, and Tymlos might be a cure??? I also have my DEXA in September. I will let you know how it goes. The person Gently just said The full dose of Forteo is half of your 40mcg dose of Tymlos, though the drugs are different. So, I guess our half-dose is good after all.

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Replies to "@cathyf31 Thank you! I will finish my 3rd Tymlos pen at 4 clicks this month. When..."

@summera1 Our dose may be good, just not "ideal" for the biggest bang for our buck, per clinical research data. Once you take an anabolic drug, you will need to lock it with an anti-resorptive medication (like Reclast or other options) or you will lose gains....and quickly. It is a sad reality of our situation. At this point, diet and exercise is just not enough to maintain bone health. And yes, I throw away my pens after 30 doses and a half cartridge remaining. I don't dare mess with degrading, less effective medication due to breakdown, with my ultra sensitive to medication system. That is not a gamble I'm willing to take in my situation. And you are correct that all Radius/Tymlos and pharmacist are not supposed to authorize anything but the FDA-approved dose of 80 micrograms. Hopefully down the road, Radius will realize they're missing an entire segment of the OP population that can't tolerate a full dose, but could still benefit greatly from reduced doses. That certainly will not happen, during my time on the medication. In the meantime, I guess they are living off of those of us who have figured out the reduced dosing can still be a benefit, even if not ideal. Sadly, some of our health providers will not support reduced doses. Obviously, the average person would ask why the heck Radius made the pen with adjustable doses, if they did not foresee this problem. (This is all voice to text, so I hope most of the right wording has come out. I'm on an inclined treadmill at level 10, so I'm choosing to put my energy elsewhere rather than editing. 🤣) Good luck!!