Monitoring needs re Actemra TCZ

[Sefu]

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.

[alvertta]

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.

[PMRpro Ambassador in reply to alvertta]

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.

[alvertta in reply to PMRpro]

My problem is I never have symptoms.

[PMRpro Ambassador in reply to alvertta]

That seems a strange way to diagnose PMR/GCA!

[alvertta in reply to PMRpro]

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.

[PMRpro Ambassador in reply to alvertta]

Not surprised. Occult GCA as it lives and breathes! Or could it have been a stroke in the more conventional format?

[alvertta in reply to PMRpro]

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.

[alvertta in reply to PMRpro]

So disappointed as I was down to 9 prednisone. Really thought I had the road to 5 in sight. Nope.

[PMRpro Ambassador in reply to alvertta]

[Sefu in reply to alvertta]

Very sorry to hear that. While still tapering any steroid as well seems to be so uniquely unlucky.

[alvertta]

Scary. Thanks.

[Rugger]

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.

[Sefu in reply to Rugger]

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.

[Rugger in reply to Sefu]

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!

[Sefu in reply to Rugger]

ok thanks. ~Guys does have a specialist line for help so probably would have been a way to go although I wouldn't want it going back to the consultant as if there'd been a slip.

[scottygirl73]

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

[Sefu in reply to scottygirl73]

Thanks. So far that's how it has been with Mum.

[jarn]

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.

[Sefu in reply to jarn]

Thanks. GP looked it up while on phone consultation and found nothing so told me to enquire with hospital rheumatology folk.

[jarn]

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!

[Sefu in reply to jarn]

I am not a fan of the GP system in the UK. Sure does knock the confidence when their look up system shows Nil. I feel they are highly trained to do little other than write tickets. I wonder whether a hospital only service with pharmacists would be far more efficient.