RA- issues with getting bloods taken and low white blood cell count.

[Coopk2]

I’ve been living with RA for just under a year. I’m on methotrexate and folic acid and it been working really well. Recently I’ve moved from the specialists to my GP. Since this I’ve had nothing but issues with them, is anyone else struggling to get there bloods taken? After 4 months I finally got them and 3 months later after calling again today to request a repeat prescription they have messaged me at 7.30pm to inform me my white blood cell count is low and they cannot prescribe me anymore until I have another test- (Bare in mind I’ve been carrying on ever since). I can’t get one until 3 weeks time. I’m scared I will start feeling pain again. Is anyone else having issues??

[charisma]

Not good. I suggest calling or writing to, or both, your Rheumatology team to get this sorted. It is risking a flare of uncontrolled RA.

Regulations governing MTX (methotrexate) and blood tests should be adhered to or they place a risk on the health of vital organs too.

When I was on MTX, HCQ (Hydroxychloroquine) along with folic acid, I regularly had low neutrophils. Each time, paused MTX, did another test one week from the poor result, and it went back to acceptable level again.

Where I am, I was getting blood tests all through lockdown, at the proper intervals, with the nurse in my GP premises.

You could write to your GP, saying how much you appreciate them and understand the pressures all NHS staff are under, even pre pandemic, then say if they cannot manage your vital healthcare, a formal complaint would reluctantly have to be made. Or something along those lines? Written communication usually is taken seriously.

[medway-lady]

Yes to the low white cell count but no problems with GP she made the appointment for follow up weekly blood test. It had gone back p but a UTI was diagnosed so back on antibiotics.

[Pognose123]

I have struggled with low blood counts since March and only today hit a good reading (see my post) - I have a master copy blood test request as I have had to have very regular blood tests since first diagnosed. Apparently GP may panic more than a RheumaBuddy team - my gp refused to prescribe repeat prescription due to the low white blood cells and Rheumy team over rode that. I have shared care -which has been very good. I hope you can get your Rheumy team back involved.

[Gilliancheche]

I have been on MTX since January, tablets first then Metoject. I have lowwhite cells and neutrophils and have been on 2 weekly blood tests all year. I get tests done at hospital, result by phone next day. I did have about 4 weeks off meds due to being too low but then started again. Can you get to hospital for tests?

[L-ttie]

Hi Recently I had low wbc and neutrophil count so didn't take mtx for 3weeks until I’d had a blood test result showing that the count had gone up. I then started back on a lower dose so just hoping that everything will carry on being under control.During the 3weeks off mtx I was fine and didn’t have any flares...but very happy when I could start taking it again. I’ve also had to stop sometimes for a few weeks if I’ve been taking antibiotics and thankfully never had a flare...tho the worry of it is always there I know.

You say that you’ve moved from your specialist to GP. Was this at the suggestion of the specialist? I think it would be advisable to contact your Rheumy nurse if you have one or your Reheumatologist to explain what is happening and get advice from them. It’s likely that they will then write to your GP to explain what your care plan is and what should happen regarding blood test timing.4months sounds a very long time to go without having a test.

Or perhaps first try booking a phone appointment with your doctor to discuss your situation?

When things go adrift it’s always a worry but there is usually a solution and somebody out there to help sort things out.

Good luck and I hope you soon get it sorted out.

[oldtimer]

I have no problems at all with arranging blood tests at the GP surgery since Covid 19. They have been most efficient.

It sounds to me as if whoever offered you an appointment for three weeks did not understand why you needed it repeating. I would contact them again and explain that you cannot be without medication for three weeks while you wait for a repeat test (which may be within normal limits). I have always had a repeat test within a few days or at least in a week's time.

[Hidden]

Quite simply, this is very poor treatment from the GP. I would have expected 3-monthly blood tests. I have my tests done at the hospital because it is nearby, much nearer than the surgery, but get my prescriptions from the surgery (emailed to a local pharmacy). One time the surgery sent a message to say I couldn't have another prescription until I'd had a blood test, but that was because they had forgotten I was having them at the hospital. At least they were being cautious.

Do I understand that your low white blood cell count was detected in a test done 3 months ago? If so, it should have been followed up at that time and not sprung on you now. Did they share the test result with your rheumatologist? If not, why not?

Really, the surgery should be calling you in for regular blood tests, the way the hospital does. They are supposed to look after us, aren't they?

Definitely report all this to your consultant. I also agree with charisma that giving a polite warning that you may have to follow up with a formal complaint would be the next step after that. Sadly, to get our proper treatment we sometimes have to step up and insist.