I have recently switched from Actemra to Tyenne due to insurance.

Posted by thereselefever @thereselefever, Aug 6, 2025

I have recently had to switch from Actemra injections to Tyenne due to insurance. Since the switch I am experiencing a lot of swelling in my feet and legs. Has anyone else had to make this switch and had similar experiences?

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I haven't make that switch, but I just googled "Can Tyenne cause edema", and I got this result for one website:

Some side effects can be serious. If you experience any of these symptoms or those listed in the IMPORTANT WARNING section, call your doctor immediately or get emergency medical treatment:
...
swelling of the hands, feet, ankles, or lower legs
...
Here is a link to the website - https://medlineplus.gov/druginfo/meds/a611004.html

I had some minor swelling of my feet and ankles from high doses of prednisone, but that faded as I tapered.

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The active ingredient (tocilizumab) is similar for both, except the "AAZG" in tocilizumab in Tyenne is apparently Aluminum zirconium trichlorohydrex glycine, an ingredient commonly used in anti-perspirants to block sweat pores. What purpose does it have in Tyenne? No idea. The other inactive ingredients are also different. I wonder if you're having a reaction to one of the new ingredients? I'd also be interested to know how others who have switched brands are doing.
TYENNE
Active ingredient: tocilizumab-aazg.
Inactive ingredients of Tyenne: arginine, histidine, hydrochloric acid, lactic acid, polysorbate 80, sodium chloride, sodium hydroxide and water for injection.
ACTEMRA
Active ingredient: tocilizumab.
Inactive ingredients of Actemra: disodium phosphate dodecahydrate/sodium dihydrogen phosphate dihydrate buffered solution, polysorbate 80, sucrose, and water for injection.

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Thank you for this. It is interesting that, since I have been taking it, I have started sweating again!! Haven't done that in years!! And it is supposed to block sweat?!

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Profile picture for jeff97 @jeff97

I haven't make that switch, but I just googled "Can Tyenne cause edema", and I got this result for one website:

Some side effects can be serious. If you experience any of these symptoms or those listed in the IMPORTANT WARNING section, call your doctor immediately or get emergency medical treatment:
...
swelling of the hands, feet, ankles, or lower legs
...
Here is a link to the website - https://medlineplus.gov/druginfo/meds/a611004.html

I had some minor swelling of my feet and ankles from high doses of prednisone, but that faded as I tapered.

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Thanks so much for the reply. I have called my doctor. We will see what she thinks.

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Ask your physician to request a drug exception as you are experiencing unacceptable side effects. May take a month but I would not delay. Good luck.

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Yes. Did not have the problems with Actemera. I have the swelling in hands and feet. Terrible dry mouth at night. A build up of mucus in my throat and nose day and night since starting the med. . The issue clogs my throat when trying to sleep and even chokes me so I wake up hacking all the time. Even have headaches of which I rarely get. Got a humidifier as instructed. Helped a little bit, but not enough. Each time I take the shot I get a sore throat. It is worse each time. It gets better during the week but starts again with the next shot. Now I have a continuous sore throat. White in eyes turned a little brownish color. I was going to take it every other week. When I got to the second week, I was feeling better. Still head cold with mucus draining and some dry mouth but not as bad. I am having to take my chances without it to see what works.

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Profile picture for megz @megz

The active ingredient (tocilizumab) is similar for both, except the "AAZG" in tocilizumab in Tyenne is apparently Aluminum zirconium trichlorohydrex glycine, an ingredient commonly used in anti-perspirants to block sweat pores. What purpose does it have in Tyenne? No idea. The other inactive ingredients are also different. I wonder if you're having a reaction to one of the new ingredients? I'd also be interested to know how others who have switched brands are doing.
TYENNE
Active ingredient: tocilizumab-aazg.
Inactive ingredients of Tyenne: arginine, histidine, hydrochloric acid, lactic acid, polysorbate 80, sodium chloride, sodium hydroxide and water for injection.
ACTEMRA
Active ingredient: tocilizumab.
Inactive ingredients of Actemra: disodium phosphate dodecahydrate/sodium dihydrogen phosphate dihydrate buffered solution, polysorbate 80, sucrose, and water for injection.

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@megz I absolutely hate taking Tyenne. Had to switch to it from Actemera due to coverage. Experiencing horrible side effects. Dry mouth, mucus build up in head and throat, nose crust build up, fatigue, swelling in hands and feet, sore throat, and change in eye white color.

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What is the point of all the the time, effort, intelligence, research and money put into finding drugs that actually work then tell you you have to try something that is similar but not quite the same? It's just sad, very sad. And the world has become a crazy place. Now your Dr has the dilemma of what to do next, how to help.
The next best thing in this case is not working. I hope you are able to get an exception to go back to what was working.

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I have had swelling in my feet and legs since day one of PMR. I get lymphatic massages to help with the edema - I have them every two weeks. They certainly help and reduce the pressure in my legs and feet.
I do have other side effects from Tyenne - and just last week I was Dx with diverticulitis. I expect to be taken completely off the injectable. Am waiting to hear from my Rheumy as to what is next for me.

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Hi, my insurance denied actemera , only approved tyenne. I assume higher profit margins. sad. I have had one infusion so far, one every four weeks. yes, my ankles are swollen .

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