Long term blood test monitoring

I was diagnosed with RA nearly 5 years ago. I've been on MTX for 4.5 years of those with <touch wood> normal blood tests (apart from inflammatory markers) and added leflunomide to the mix 2 years ago.

My rheum nurse is asking for blood tests every 4 to 6 weeks. My rheum feels that I'd be fine with every 8 weeks but given that the nurses are the ones who issue my MTX injections to the hosp pharmacy, the decision has now been made to keep them as close to monthly as possible.

I struggled through with all my appts when I was at university but I now have a very busy job that's 22 miles away from my home and even further away from the hospital. I am entitled to leave for appts but I'd rather save it for other appts especially as I have other health problems.

I don't think I'm being foolish or unreasonable given my very good history of tolerating these drugs in terms of serious side effects but I wondered what other people think?

Thank you for reading.

10 Replies

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  • It seems extreme to me. I have tests every three months as my results show all is well mostly. I'm on MTX, sulfasalazine and plaquenil. My GP does the tests now as most rheumy stuff has been passed to primary care.

    See if the consultant can help resolve it. Phone or e mail their secretary?

  • I don't find this unusual for the UK. I used to have mine done the week before my 3 monthly appointments in Spain but here there done every month at my Surgery. I always have them done first thing & as I'm usually the phlebotomists first or second appointment I'm in & out within 5 mins (unless she's not many appointments & chatty!). If your GP's have signed up to shared care with your hospital I'd ask if you can have them done at your Surgery if that's closer to home.

  • We are trained to inject ourselves.

    Sometimes I wonder if we could take our own bloods??

    How far is the GP surgery from your place of work, my GP would pass my blood samples results back to the hospital, that may be a way forward.

    If they want regular bloods I cannot blame their diligence in some ways, they are looking after you and the medications are or can be a problem,

    One further way you may be able to arrange a District Nurse to take them for you.

    Above are just suggestions, I do not know if any would be possible, your GP may be the best bet

    BOB

  • I get my bloods done every 2 weeks as I'm increasing MTX but they are done at our local surgery & the bloods get on the system so the GP can see them. As I see my consultant out of area I get a print out of my results to take to him.

  • hi crashdoll

    Your nurse is working within the guidelines that insist 4 weekly tests when taking Leflunomide. Your blood chemistry can change quickly on that drug. I tried to stretch the tests to 6 weekly but was told the Leflunomide would be stopped if I didn't go back to 4 weekly. I thought it a bit anal when I was told 4 weekly, not monthly, as some months have five weeks in them.

    Sorry, it's not what you want to hear.

    Footdoc

  • I would see whether your GP surgery can help. At mine it has to be done by 12noon to enable the samples to get to the hospital but some early morning appointments are offered. Or whether the hospital laboratory has personnel who can offer a better appointment time - nothing worse if all you can get are in the middle of the day. Farm

  • As footdoc says it may well be because of the Lef, not the MTX. After several years of stable results I've managed to persuade my nurse to allow me 6-8 week gaps, but am not on Lef, just MTX, Hydroxy and Sulpha. So the suggestion others have made about asking about GP blood testing sounds a good one to look into perhaps.

  • I was diagnosed over 20 years ago and have had 4 weekly blood tests ever since no matter which drug I've been on. Sorry

  • I have been on leflunomide for 6 months now and was having 2 weekly blood tests. I have now gone to 2 monthly blood tests! My GP says if I start to have a flare I can just ring and arrange a blood test myself, no need to speak to her first. It would appear if you take leflunomide with another DMARD you have to have monthly tests. I just take leflunomide as the others stopped working.

  • Thanks for all the replies - food for thought. :)

    Unfortunately, my GP surgery is very close to my home, so whether I have the bloods at my surgery or the hosp, it's going to mean time off work.

    Having thought, perhaps it's the combo of MTX and lef that are triggering their "must be 4 weekly" response?

    I will have to have a word with my line manager.

    And on that note, I'd better go to work......!

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