Hi I have seen a reference to at least monthly blood tests, but can't find my own notes. What should we request in terms of monitoring/testing for danger signals while taking TCZ ? Thanks.
Monitoring needs re Actemra TCZ: Hi I have seen a... - PMRGCAuk
Monitoring needs re Actemra TCZ
My rheumatologist gave me a monthly requisition for ESR, CRP. plus some blood levels for creatinine, alanine transamine, complete blood co, albumin. I go once a week for ESR , CRP. And once a month for the above. Going weekly as I lost eye sight in July. Paranoid. I am on bi weekly Actemra.
Not a lot of point checking CRP as Actemra interferes with the production of CRP and so it is no longer an indication of inflammation and is meaningless in terms of monitoring actual disease progression. A top rheumy says she goes entirely by symptoms.
My problem is I never have symptoms.
That seems a strange way to diagnose PMR/GCA!
I had symptoms in October 2018. Verified by biopsy. But when I lost my eye sight this year nothing was amiss before the day it happened. And nothing since. Very strange. So I am paranoid.
Not surprised. Occult GCA as it lives and breathes! Or could it have been a stroke in the more conventional format?
They did every test. No stroke. In July my right optic nerves looked like a big swollen ball and white. Should be flat and pink (w blood) . Back to normal now.
Scary. Thanks.
Was your Mum given a booklet published by Roche, called 'My RoActemra'?
In there it says that we should be monitored every 4 to 8 weeks for the first 6 months and then every 12 weeks thereafter, especially liver function, but also full blood count and lipids.
Your Mum's Rheumatologist or specialist nurses should be getting in touch regarding what blood tests they need.
Best wishes.
Thanks. No not given anything although she is at Guys and St. Thomas in London and so far it has felt top class for caring, not just applying the expertise.
The Roche Customer care line is 0800 731 5711 (08.30 - 17.00 Mon - Fri) Give them a ring and ask for a 'My RoActemra' booklet for GCA - better late than never!
Maybe ask the Rheumatology department at Guys if they have Specialist Nurses?
The nurses in Leeds operate a Helpline for us. We seem to be very fortunate oop here!
Before covid i got my bloods done week before my monthly infusion.But to date had them done once,i am on injection weekly now.While getting infusion they were always taking your blood pressure,temperature ect,i have a bp monitor so i just do it myself.I was just left to figure it out myself as just had call to say meds would be getting delivered,mabey i should learn to take my own bloods???🤣🤣🤣.xx
Your doctors should be advising as may have other criteria; I do have m onthly blood work done with a plethora of tests; also having semi-annual cholesterol tests of late.
Okay.........rheumatology would be the way to go for sure. Sure is maddening/confusing when the medical profession cannot offer more than that. You will get it sorted!