Tymlos and leg swelling (edema)

Posted by summera1 @summera1, Jul 19 11:06am

Did anyone get leg swelling (edema) on Tymlos? What about belly bloat? Did it ever go away? Did you switch to Forteo and it went away?

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summera1, I've only taken Forteo. The full dose of Forteo is half of your 40mcg dose of Tymlos, though the drugs are different. They share the same mechanism of action. By flooding your bloodstream with calcium they expand the blood vessels. This expansion can make the blood pool in your extremities. You can lessen the expansion by taking the injection with a little salt and caffeine. Both constrict the vessels. It can also help if you rest your legs higher than your heart during the first hours after the injection.
Forteo is worth trying, especially if your physician can get you a sample pen from the drug rep.
The belly fat is a risk with both medications. Again it's the high levels of calcium which stops fat cells from their normal death. The belly fat does go away when you stop the medication, but it takes a while.
I haven't had belly fat or leg swelling with Forteo. But I hope you hear from those who have switched successfully They are out there. I'll look for their posts.

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@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!!

REPLY
Profile picture for gently @gently

summera1, I've only taken Forteo. The full dose of Forteo is half of your 40mcg dose of Tymlos, though the drugs are different. They share the same mechanism of action. By flooding your bloodstream with calcium they expand the blood vessels. This expansion can make the blood pool in your extremities. You can lessen the expansion by taking the injection with a little salt and caffeine. Both constrict the vessels. It can also help if you rest your legs higher than your heart during the first hours after the injection.
Forteo is worth trying, especially if your physician can get you a sample pen from the drug rep.
The belly fat is a risk with both medications. Again it's the high levels of calcium which stops fat cells from their normal death. The belly fat does go away when you stop the medication, but it takes a while.
I haven't had belly fat or leg swelling with Forteo. But I hope you hear from those who have switched successfully They are out there. I'll look for their posts.

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@gently Thank you!

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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!!

Jump to this post

@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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Profile picture for summera1 @summera1

@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.

Jump to this post

@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!!

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Level 10! I am impressed! Thanks:) I throw away the pens, too. My dr was impressed with the gains on p1np on the half-dose, so I think we will see some gains on the DEXA! Sadly, I did not know I had to go on something afterwards. Sigh, I hate meds.

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