Success with Kevzara, but now new non-PMR symptoms.

Call the 800 number on Kevzara website

I would be careful restarting something that he does not need. Any drug can have side effects. I was on prednisone for 6 months. I stopped almost 5 years ago. I did not take a biologic to stop. I still have gastric issues as side effect. I take 1 or 2 famotidine every day. I still get headaches off and on and I was never a headache person. I take an alleve as needed. I have what feels like a pinched nerve in my right shoulder. The alleve also helps with that. I was 69 when I got PMR. I am 74 now. It could be Kevzara would help but it may be withdrawals from prednisone as well. Or maybe old age. Who knows.

I have GCA and PMR, so it makes me a little uneasy when you say your friend is having head and neck aches. I have seen several posts in the past where someone developed GCA as they were nearing the end of their prednisone taper for PMR. Approximately 10 - 20 percent of people with PMR will develop GCA. Google says gastric symptoms are not common for GCA, but they are possible. I would recommend that you and your friend get familiar with the symptoms of GCA, and follow up with a doctor if the symptoms continue or get worse.

There are no withdrawal symptoms from Kevzara that I am aware of. I don't have any experience with Kevzara. I have experience with "long term Actemra." I have been on Actemra for 7 years but not continuously. I have not been able to stop my monthly infusions of Actemra permanently.

It was easy to discontinue Actemra and no real tapering was needed in the sense of slowly tapering off prednisone. Both Actemra and Kevzara have a relatively long half-life so these medications basically taper themselves over a few weeks.

Neither biologic suppress adrenal function so no worries for the pain caused by adrenal suppression. However the aches and pains caused by poorly functioning adrenals can persist for a long time after stopping prednisone.

I have stopped Actemra for as long as 8 months. My aches and pains gradually returned and got worse the longer I remained off of Actemra. Some of the aches and pains were caused by an exacerbation of pre-existing conditions diagnosed before PMR. Other aches and pains were from newly diagnosed conditions which I never knew I had. Other aches and pains were caused by a return of "systemic inflammation" that couldn't all be attributed to PMR.

My doctor has asked me while I was on Actemra if I needed anything for pain. I claimed that Actemra was controlling my pain. My doctor said Actemra was controlling the inflammation but not all of the pain. She was implying that inflammation "adds to the pain" but there are plenty of things that are called "non-inflammatory" sources of pain. This kind of pain might include structural joint damage and nerve damage.

My doctor said returning symptoms and new onset pain when Actemra was stopped warranted a new investigation of underlying conditions.

The other possibility was that systemic inflammation can slowly re-emerge. This was true in my case and supported by gradually increasing inflammation markers. That was why Actemra was restarted but not all the inflammation was attributed to PMR. Actemra targets elevated levels of IL-6 in PMR but it turns out that elevated levels of IL-6 aren't exclusive to PMR.
https://pmc.ncbi.nlm.nih.gov/articles/PMC4176007/

I agree with jeff97 that these symptoms could indicate the onset of GCA. It is not likely that these symptoms are due to a specific kevzara withdrawal syndrome; more likely, the discontinuation of the medication is allowing inflammation to recur. In this situation, an urgent medical evaluation would be entirely appropriate.

@dadcue
Thank you again for sharing your experiences and knowledge you've gained from it. It's incredibly helpful. Just sorry you've had to battle these diseases so long. I'm noticing just from tapering from 25mg, to 22.5 and then to 20mg Prednisone yesterday, that a lot of my upper back, neck pain are here this AM. I noticed a little from the 25 to 22.5mg but this is even more so. I have to admit, I much preferred the "pain free" days. I know they'll be a certain amount of the "old pain" I'll have again and have medications for that. The important thing is to be able to differentiate between the "original" pain I've had for years and the PMR type pain. Luckily ( but not so much), it's pretty easy to remember that brutal pain and know the difference. I'm just hoping that that pain doesn't rear it's ugly head while tapering. Still waiting on prior authz from Ins. for Kevzara, then I'll have to decide whether to start this year or Jan. 1.
Thanks for that link also re IL-6. It's also a really good point that over time, while on these medications, we're continuing to age, and there will be some more deterioration of our bodies. Blessings again.

From what I have read, stopping a biologic can possibly cause anti-drug antibodies to form. Restarting might cause a problem.
I have seen someone have a severe reaction to a biologic and when tested for the drug antibodies they were extremely elevated. I could be 'off base' with this but before restarting I would test for the anti-Kevzara antibodies.
Has anyone taking a biologic been tested for the drug itself level along with antibody level? They do this testing right before an injection/infusion.

First, I would be very careful in giving medical advice to your friend based on the replies here on Mayo Connect. Second, I would also suggest that you encourage your friend to join Mayo Connect to read posts of interest as well as posting their own questions. Please remember none of us are medically trained and are not really qualified to speak up when it is outside of our personal journey.
My suggestion would be your friend needs to treat this as a new problem and not related to PMR, prednisone or Kevzara. Wanting to eliminate symptoms is human nature but until there is clarity as to the cause of the symptoms no one is actually acting in their own best interest by only addressing the symptoms. I would advise them to go to their PCP and present the symptoms and ask for help in getting to root cause and an appropriate treatment.

@jabrown0407 Anyone with PMR who develops new headaches should be alert to the possibility of GCA. GCA and PMR frequently occur together. 10 - 20 percent of people with PMR develop GCA, and 50 percent of people with GCA also have PMR. I have both, and almost lost vision to GCA. GCA is a very dangerous condition. If the person's PCP isn't familiar with GCA, I would try to see a rheumatologist on an urgent basis.

I would agree. Since this is your friend you were asking for, I assumed you had already alerted your friend and were not waiting for your "ask the audience" question to us to raise the concern of GCA.
I have GCA found via a PET scan. I never had a single cranial symptom. I am dealing with aorta and neck vein damage stemming from the Dx. So one-off's can happen for sure. To receive my Dx I travelled out of state to the leading large vein vasculitis teaching hospital network. Without question this is an extreme case.
I suggested that your friend take the symptom to their PCP which is the route we should all take with new symptoms and not jump to a self-diagnosis or a Dr Google diagnosis. Assuming we know more than a trained and experienced doctor is not really in our best interest. To tell your PCP that you are concerned that it may be something specific and to please eliminate that early on is totally acceptable.