I have recently switched from Actemra to Tyenne due to insurance.
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 have newly diagnosed PMR, and am starting a prednison taper. My rheumatologist is suggesting that I go on tocilizumab, but the only brand covered by my health plan is Tyenne.
I'm a little nervous after reading these comments, so my question is: Are there folks out there who are on Tyenne and doing OK with minimal side effects? I'd love to hear from you.
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1 ReactionSo, I spoke too soon - my ankles are now swollen like grapefruit. And yes, I can no longer take Tyenne or any IL-6 inhibitor due to my diverticulitis. I am only able to take prednisone for my PMR/GCA. Other side effects I was having with the Tyenne was it was playing with my Synthroid and T4 levels, It increased the liver function which was changing my rate of metabolism. Tyenne also appeared to be messing with my parathyroid hormone. I am also having blood pressure problems necessitating a secondary BP drug. Another heart related side effect were extra heart beats, going to a cardiac specialist to see what can be done. Lastly I was having minor diarrhea issues as well. Now that I am off Tyenne I hope these side effects will dissipate over time.
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1 ReactionMy M'care B and supplement insurance cover the Actemra infusions 100%. I've had only one so far. I asked to do the self injection and my part D required all the exception request/paperwork. They approved only the Tyenne for self injection. I will begin that soon and report on any side effects later.
@kayept hi. My insurance denied actemra Only coverage for Tyenne I have a Medicare advantage plan by Molina healthcare. (Was connecticare) Who do you have for insurance ?
@elleninz so far one infusion of Tyenne. Next one on April 15. So far swollen ankles , legs , not that bad. Oh and tired.
Ellen
@elleninz my supplemental policy is through Aetna.
I'm on the non-profit Kaiser insurance, Medicare advantage. They too only approve Tyenne, monthly infusions is what I chose. Since July of 2025. I've had no side effects, other than a bit of the dry mouth others have mentioned in the morning and possibly contributions to fatigue. It did help me go from 15 mg down to my current 2.5 dosage of Prednisone.
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1 ReactionMy Medicare Advantage does not cover Actemra...period. I sent in a pre-authorization request for Tyenne and they declined it, stating I had to try Rinvoq first. My cynical-self asks why would insurance want a medication, advertised on TV every hour, when it was approved by FDA for GCA less than a year ago. At this point, I'm leaning towards staying on Prednisone...better the devil you know than the devil you don't...and forgetting the others.
@kayept Thank you , I hope all is going well.
I find it amazing that insurance companies are choosing what medicine you should 'try'. Do they have a qualified specialist reviewing individual case histories to determine if the side effect risks might be too high? I hope so.
My pmr is not active but after seven years I am still on prednisone alternating between 3 and 2.5 mg. I am coping with other health problems. Along the way I have had some cardiac issues and was prescribed 25mg metoprolol succinate ER and 50mg flecainide (twice a day). Both are low doses and seem to be helping.