Advice on blood tests at the moment

[Galaxy2]

Hi All

I would really like your thoughts, I am soon due for for my 12 week post rituximab blood test and in all honesty am not at all keen to go. Would you say it was vital or in the circumstances would it be ok to give it a miss or delay for a while?

Thanks Jenny

[Cookyboy1]

Hi jenny, I am due to go to addenbrooke's on the 21st but have had a text message and now a letter has turned up today saying that I would be having a telephone consultation, I've had both of my rituximab infusions and was going to the clinic on the 21st not sure though whether that ment blood tests though, I would possibly phone to find out like I did, hope this helps. Adrian

[May7]

I'd best get in touch with your consultant. I didn't go for my routine rheumatology blood tests in March because my appointment was cancelled by my surgery. But then in April, I received a text from the surgery saying that considering the risks I should STILL (and they put still in capitals) have my monthly tests done and to make an appointment. I went along, feeling very nervous, and was met at the door by a masked member of staff to whom I had to identify my reason for entering. I was seen by a gowned and masked nurse who took the blood samples.

Fortunately the doors were all automatic, and although I used hand sanitiser going in and out, I didn't need to touch anything.

But my nephrologist, who I had a telephone appointment with, doesn't want me to have these tests done more often than every 2-3 months, and told me to take all my clothes off when I got home and put them straight into the wash. I then had a shower of course.

[Lauriescott1]

I'm fortunate to have a very knowledgable & responsive Consultant who has been in regular contact - Whilst my intended 6 monthly Rituximab has been deferred so has not to further comprise my immune system regular telephoned clinic have continued to determine, depending on "how things are" as to whether any bloods are required.

So I wouod suggest contact your Consultant before venturing off to the hospital/ GP for blood tests as they, the medical professionals, feel it beneficial for "vulnerable" groups, such as ourselves, to avoid such places at the moment having minimal/ no contact with others outside of your household.

[AndrewT]

Dear Jenny14,

I have never 'been' on Rituximab, just about the only one that I haven't mind.... I'm now under Ipswich Hospital, for my routine Check Ups, and my Consultant- Dr Andi- has told me NOT to have anything 'Done' at this time. Should I feel 'unwell' I should contact him.

Can you contact your Consultant, maybe leave a 'Message', asking for a Clarification?

Sorry, the best that I can suggest Jenny14.

AndrewT

[Galaxy2]

Thanks All

I've had a few mixed messages from my medical team and as have just been told my next rituximab infusions won't go ahead to prevent my immune system being depleted anymore and to keep me away from hospital wondered if my blood tests are really necessary. I'm also not on my GP's record as being high risk so reluctant to book a blood test through them and that not be flagged.

I'm going to call my rheumatologist's office on Monday and ask his opinion.

Thanks all and keep well

Jenny

[Keithtim10]

Hi Jenny please don't worry I had same thoughts when I was having Rituximab but I was happy to get the results to see just how it worked and to be fair I was well pleased with the results.The ongoing tests for me have been good and touch wood had no flare ups since I was on the drug.My only problem is the vasculitis left me with Stage 3 CKD so I obviously have this ongoing issue but I deal with it accordingly and I have a very good consultant.Please don't worry stay positive Jenny and keep smiling.Hope all goes ok.

[Galaxy2 in reply to Keithtim10]

Thanks Keithtim10

Its just all so worrying at the moment and I'm keen to avoid going out anywhere especially hospitals or doctors surgery's, glad rituximab has been good for you, it really has for me too.

Keep well

[gibson100]

Hi Jenny

I wasn't too was due fo due for my next clinic appt next week, 12 weeks after Rituximab.

I emailed.My consultant about my concerns about visiting the hospital he emailed straight back saying that we should talk on the phone but that I should have bloods done first.

This I am doing tomorrow morning at Royal Free London.I made a timed appt and I understand security is quite right

I will let you know how I get on tomorrow

[Galaxy2 in reply to gibson100]

Hi Gibson100

I have been told not to have my blood test by my specialist's office which I'm quite relieved about. Good luck tomorrow, hope there is not too much hanging around for you. I am due to see my specialist at the Royal Free in June so am hoping that will be an appointment over the phone too.

Thanks

Jenny

[gibson100 in reply to Galaxy2]

Hi Jenny

I just got back from doing blood tests at Royal Free requested by Prof Salama

I had a timed appointment in the Phlebotomy Department on the ground floor.So no need to go in the lift!

My ride dropped me at the front door at 1120,and picked me up at 1135.The place was deserted apart from staff and maintenance crew.there was one other patient ahead of me.

The phlebotomist was fully togged up in PPE a!though

strangely the maintenance crew were not.I wore a face mask as we're most people working in RFH.

I had a shower and put my clothing in the wash as suggested by another consultant friend of ours.

So it was actually quicker and easier than usual although a little surreal.

I guess the consultant will call when the results are on system.

best regards

Chris

[Galaxy2 in reply to gibson100]

Hi Chris, glad to hear it went so smoothly. Yes I can imagine a bit surreal, such a busy hospital normally and I bet the traffic around was so much better than normal too.

Keep well

Jenny