1. < Polymyalgia Rheumatica (PMR)
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Success with Kevzara, but now new non-PMR symptoms.

Posted by reub4 @reub4, Sep 13 6:40am

My good friend was successful in eliminating PMR symptoms by taking pred and Kevzara. He was on Kevzara and ultimately he stopped taking pred after one year. He reduced the Kevzara first to 1x every 3 wks and then every 4 wks. He stopped Kevzara and no PMR traditional symptoms have reoccurred but multiple other symptoms have started including consistent headaches, neck pain and gastrointestinal symptoms. These symptoms are short in duration but there seems to be some sort withdrawal from Kevzara. Lab numbers are nearing normalcy.
My question is whether these new symptoms could somehow reflect some sort of withdrawal from Kevzara. He is considering restarting Kevzara which he has had excellent results. His Dr. has not been helpful as he has had little experience with Kevzara.

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stonewheel | @stonewheel | Sep 15 6:40am

@reub4 I’d like to know what the diagnosis for these new problems is.
Please update when you know.
And I hope it was nothing serious.

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kjoed53 | @kjoed53 | Sep 15 8:00am
In reply to @jeff97 "@jabrown0407 Anyone with PMR who develops new headaches should be alert to the possibility of GCA...." + (show)
Profile picture for jeff97 @jeff97

@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.

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@jeff97
Once my rheumatologist advised me to the GCA risk, I made an appointment with my opthalmologist. My rheumatologist checks for GCA symptoms every visit but I wanted my opthalmologist to look for early signs of vision change and know that I've been diagnosed with PMR. If nothing else, I left her office with peace of mind.

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junegh | @junegh | Sep 16 7:33am
In reply to @pmrsuzie "From what I have read, stopping a biologic can possibly cause anti-drug antibodies to form. Restarting..." + (show)
Profile picture for pmrsuzie @pmrsuzie

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.

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@pmrsuzie my daughter takes entiviyo for ulcerative colitis and they check her blood before the infusion to check antibodies and how much left of the drug is in her body to determine if they need to increase the infusion time. For instance she was doing it every 8 weeks and now has to increase it to every 6 weeks. Hopefully and we pray it continues to work and she can continue to do it every 6 weeks. I take actemra infusions but they do not test my blood for that.my infusion is every 4 weeks.

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pmrsuzie | @pmrsuzie | Sep 16 9:05am
In reply to @junegh "@pmrsuzie my daughter takes entiviyo for ulcerative colitis and they check her blood before the infusion..." + (show)
Profile picture for junegh @junegh

@pmrsuzie my daughter takes entiviyo for ulcerative colitis and they check her blood before the infusion to check antibodies and how much left of the drug is in her body to determine if they need to increase the infusion time. For instance she was doing it every 8 weeks and now has to increase it to every 6 weeks. Hopefully and we pray it continues to work and she can continue to do it every 6 weeks. I take actemra infusions but they do not test my blood for that.my infusion is every 4 weeks.

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@junegh
Thank you for affirming my statement that there are reasons for testing drug and drug antibody levels...
With the recent Humira patent expiring, some insurance companies have dropped its coverage due to cost and substituting biosimilars. My son was involved in this and his Humira and antibody levels were measured before the switch.

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