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Tymlos and leg swelling (edema)

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

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Profile picture for CathyF31 @cathyf31

@summera1 Yes, I am dealing with the leg swelling/edema and significant belly bloat from the start, deapite disciplined gym workouts 3x/week, including a 10K daily step goal. I've had to reduce from the full dose of 80 mcg after the first 3 weeks and I have been unable to increase beyond the current 40 mcg (4 clicks). I just started my fifth Tymlos pen. Despite my ongoing side effects and issues, I am determined to remain on Tymlos, as multiple docs believe Tymlos slightly outperforms Forteo in the long run. My bone marker test results still indicate I'm having a strong positive response (P1NP : CTX ratoo), even though I've been on the lower dose for the last 4-1/2 months. I have my next DEXA + TBS scan at the end of August. I'm very interested to see if all these issues, including significant bone pain, hivesand welts at the injection sites, headaches, nausea, etc (all of which vary from day to day). I moved my injections back to morning, as I found the activity helps to mitigate some of the issues, including the sleep disturbance. . I will have only completed five Tymlos pens, by the time I have the next scan. Previously to that, I had failed short-term treatments with Boniva and Evenity, due to significant side effects. During my best to stick with Tim Lowe's and definitely dreading a step that comes next, whether it is sooner or later, with Request. Due to my drug sensitivity, my provider has already mentioned that we may need to go with a half dose of Reclast. I'm certainly hoping that a recommendation of only treating with Reclast infusions every 5 years will end up supporting some of the research findings...and soon.

BTW - I believe others have posted in the past that they had to reduce down to two and three clicks of Tymlos and still had encouraging gains on their bone growth via both DEXA scans and encouraging bone marker results, as interval indicators. Please research that further, as I don't recall details.

Best wishes!!

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Replies to "@summera1 Yes, I am dealing with the leg swelling/edema and significant belly bloat from the start,..."

@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.