Blood tests

Can I ask you all a fairly simple question how often should I have my blood profiling carried out. I was diagnosed in May ANCA positive with GPA

Spent over 2 weeks in hospital and have completed my Rituximab treatment next one is due in November. I am currently on 15mg steroids and long term antibiotics on a low maintenance dose.

My CRP level as started to climb on the last 2 blood tests and my consultant commented “we need to keep an eye on the levels” at its worst it climbed to over 500 on admission to hospital

My consultant says at my last review which was 4/52 “blood testing on a regular basis and we would catch up in a few weeks”. I am able to ring the rheumatoid specialist nurse as and when I need to which is reassuring. But I would appreciate if you could advise me how often I should have my blood profiling carried out as I do not have a date for my next test. Thank you for your time and advice

[May7]

They're really not looking after you properly; you should be having regular blood tests already.Although my doctors took several months to diagnose my ANCA pos EPGA, once they did, via several blood tests, I was assigned to a Rheumatologist. She had my bloods checked weekly first after putting me on steroids and other immunosuppressive drugs, then monthly for over four years, then when things looked more stable she thought every two months was sufficient.

I think you should get straight onto your Rheumatology nurse and request these blood tests.

Good luck.

[Investigator1]

For me it wax every month for the first year, with the odd one missing because of COVID not it’s every 6 weeks as I am on Rituximab, I see my Consultant every 3 months and have blood tests and arrange my own locally in between.

[Mooka]

I think if your consultant suggested monthly blood tests he should have written to your GP and asked them to do it or given you instructions to get it done at the hospital. Do you get copied into the letters? I have just booked a blood test at my surgery and only know I need this because I was copied into the letter to my GP. I would call your specialist nurse and ask. If your CRP was rising you could have an infection brewing or some inflammation.

[Vqueen]

I have blood test every 2 weeks and see the consultant every 2 weeks however I get lots of phonecalls in between too. I also have GPA treated with steroids, rituximab, antibiotics and now azathioprine too. Rituximab will be needed again after 6 months.

[AndrewT]

Dear Walzingmatilda,

I know little, if nothing, about the Australian Health System (which is where I assume you are from), however I agree with 'others' you DO seem a bit- shall I say- Neglected.

'How Often Should You Be Tested (blood Profiling).... To be honest, with your Results, RATHER MORE OFTEN! Sorry but you DO need, to 'Speak' to your Hospital Team, and fairly urgently too. Can you metaphorically, if not actually, sit 'Outside The Door'?

All that said, I DON'T want to Scare you unnecessarily, and if you are 'feeling' fairly Well then, I'm sure that you will be.... Blood Results CAN be 'Notoriously Jumpy'. I just think that They Could- and Should- be Monitoring you better.

Do give your Doctor a Call.

AndrewT

[juli-pa]

Reading these answers I am a little worried now as my bloods are every 3 months followed by a video consultation. I had bloods las Friday & have checked my patientview which is only showing 5 blood results when I normally have 20. Have emailed consultant & rang hospital as I have video consultation on Monday but have had no response to any of it so far. Feeling very frustrated as I have to travel quite a way for my blood tests as I am under a different trust to the area I live in. I am currently in clinical remission so may be why I don’t need blood tests as regular.