Bloods

[frechfield]

Hi out there, it's been a long time since I posted on here and hope your management of RA is OK, anyway its been 13 months now since I had a consultation with rheumatology nurse, not a word have I had since, I've been taking sulfasalazine 500mg x2 daily, I used to get my bloods taken every 3 months, last year being the start of this so called pandemic ( read into that as you like) I had them ever now and then( I put that down to Doctors being under extreme pressure) hope you follow so far, Anyway my last bloods I gave where in October 2020, four months back, should I be having them more regularly? I would also appreciate it if anybody from rheumatology could inform me if its now safe for me to leave my bunker.

[allanah]

I'd call rheumatology or your gp and ask do they still want your bloods doing. Mine called me when they got missed one month! But different drugs get checked at different times ?

[frechfield in reply to allanah]

Thanks for info, I will try phone morrow morning.

[allanah in reply to frechfield]

Yes worth checking I feel, good luck. Sometimes if you've been very controlled they can leave it longer but that sounds a while eith no input!

[helixhelix]

It’s not right to have no contact at all, 13 months is too long. So do get in touch with your team.

However I wouldn’t worry too much as the NICE (NHS) guidelines for monitoring people of sulphasalazine are for first 3 months only and then I think annual, here....

For SULFASALAZINE

Monitoring of patient parameters

Blood disorders

Close monitoring of full blood counts (including differential white cell count and platelet count) is necessary initially, and at monthly intervals during the first 3 months

Renal function

Although the manufacturer recommends renal function tests in rheumatic diseases, evidence of practical value is unsatisfactory.

Liver function

Liver function tests should be performed at monthly intervals for first 3 months.

[nomoreheels]

Hiya frechfield. Even in the present situation you shouldn’t have been incomunicado from Rheumatology of some kind, either Rheumy, Specialist Registrar or Nurse for 13 months. Someone should have been in touch. I've still seen Registrars in spite of my Rheumy beggaring off to another hospital! I used to be seen once a year by Rheumy, at 6 months by an SpR & 3 months by a Nurse. What has changed with me is bloods which I’ve had every month for 8 years, it is now every 3 months, & if I've not made an appointment at least a fortnight before they’re due my GP Practice send a reminder letter, not an actual appointment but a reminder for me to make one. Quite why they can't take slight effort to make one for me it is beyond me.I'd phone your team, the helpline if you have one, your Rheumy's Secretary otherwise. They are still running clinics even if they're doing so with less staff so I’d remind them you've not been seen in 13 months & frequency of your bloods.

I hope you're seen soon.

[Neonkittie17]

Hi, you should at least receive a phone consultation from your rheumy nurse if the rheumy is only seeing urgent/difficult cases as mine is at the moment. As I was seen my biologics nurse in September at my all day infusion and then afterwards a couple of times since then on the phone I was fine with speaking to another general rheumy nurse I know well just to do a thorough review about everything. You should be having your bloods done though. I didn’t think patients were being asked to extend that at the moment. Hope you can leave a message on the helpline to say it is over a year now since consultation and you’d like to speak to someone. I always used to have blood tests for Sulpha every 3 months. Even when stable. I always request blood forms sending now to let me have them done at my GP practice for Rituximab every three months. That’s a requirement from NICE I was told and has to be done if on Rtx. I always have. Hope you can leave a message and they return your call very soon.