Advice about blood test please

[Skyler66]

Hi everyone hope you are all keeping well? I'm newly diagnosed I've been on mtx for 18 weeks and it's been going well until a week ago, I have a telephone appointment in 2 weeks time and as no one as instructed me to book a blood test I was wondering if I should do so anyway I think I need an adjustment of my meds as I am going through a flair and struggling with swelling and pain. I would really appreciate some advice?

[Wobbies]

Strange that the rheumy did not set out how frequently you need blood tests. I have to have them monthly still even though I have been on MTX for 10 months. My sister has to have them 3 monthly but she has been on it for 10 + years. I would try and book a blood test as surely they will want to know what your inflammation levels etc are doing and how well your body is tolerating the MTX. If you are not doing well on MTX as you mention flaring, your results may inform that. Our blood tests have continued through the pandemic. Good luck.

[Skyler66 in reply to Wobbies]

Thank you wobbies I think I will just book a test a week before the appointment, I haven't had much help from rheumy but have found the advice on here so brilliant I have learnt so much I didn't know thanks again.

[Neonkittie17 in reply to Skyler66]

I echo Wobbies good advice. x

[Skyler66 in reply to Neonkittie17]

Thank you

[Hidden in reply to Skyler66]

Definitely take the initiative and make appointments for regular blood tests, I agree with others, at least monthly. Your GP should have to keep an eye on you anyway since mtx will influence your bloods, coliac etc.. You need to be supervised. Your flares will hopefully come under better control once the mtx has taken hold in your system.

[Skyler66 in reply to Hidden]

Thank you, haven't heard from my own GP for quite some time it's just been past on to the rheumatologist but as I'm newly diagnosed I wasn't told much and found more things out from the lovely people on here for advice (more friendly)

[Hidden in reply to Skyler66]

I've been through the same at the beginning. It's hard to believe my diagnosis was 3 years ago. You will go through ups and downs with your RA. GPs don't have the expertise for rheumatism but they check on side effects of your mtx. I had even been taken off them for a few months because I had adverse results in my blood until it calmed down.

[Skyler66 in reply to Hidden]

Thank you I will definitely take heed of your advice and maybe I will give someone else as good advice as I've been given

[Hidden in reply to Skyler66]

I hope you can feel that you are among friendly people. It is not all about advice but the comfort of sharing your experiences knowing there are those who will listen.

[Skyler66 in reply to Hidden]

Thank you it's very much appreciated

[oldtimer]

I would think that knowing your inflammatory markers (ESR or CRP) would be useful for the rheumatologist. Mine always likes one done before I have a consultation (not that it then seems to make much difference as the strategy is always the same).

[Skyler66 in reply to oldtimer]

Just as I was thinking thank you for the advice

[Whitegate]

After 3 years on a blood test every three months, they`ve change it to evey six months `cos I`m stable, they said.

[Skyler66 in reply to Whitegate]

Thank you

[Boxerlady]

I started DMARDS in 2019 and I'm still on monthly blood tests as I've had several medication or dose changes so have never been put on to the 3 monthly ones.

It seems very strange that you haven't been told to have them; my clinic won't release prescriptions if blood tests aren't up to date. They have recently said that they'll accept 6-weekly ones but only temporarily because of the lack of blood tests appointments due to the test tube shortage.

[Skyler66 in reply to Boxerlady]

I have only had 2 appointments in the 18 weeks since diagnosis and did have blood tests while I was on prednisone but since then I've been sort of left to see if the meds were suitable for me which they were until a week ago, rheumy was unhelpful and I felt that I was left to get on with it, but it is great to have this place to refer to if I'm worried thanks to all of you who gave me and others your words of wisdom ( those who are nieve like me)

[Paula-C]

You should of been having regular blood tests when starting mtx, I think every two weeks to start with. I've been on mtx since 2010, I've only ever had a problem with my bloods once, that was in 2015. I'm in remission, bloods every three months. Last June my mtx dose was lowered by 2.5mg, not been a success so it's just been upped. I've got to have bloods every two weeks for the next six weeks. I'm on a very low dose of mtx, been on a lot higher dose with no problems, I did say I'm happy to stay on three months but been told it's protocol and I've got to.

[Skyler66 in reply to Paula-C]

Hi Paula - C yes I had blood tests for the first 6 weeks once every 2 weeks but since then I've not been told anything, I don't like to bother the rhuemys hence the asking advice from all of you good people, thanks I have taken on board all of these messages much appreciated

[KittyJ in reply to Skyler66]

Can I ask who told you to stop the blood tests? You should be monitored closely when you start mtx and then if things are ok you can cut down the amount of tests.

[Skyler66 in reply to KittyJ]

No one told me to stop I just have never been told how often to have them

[KittyJ in reply to Skyler66]

Ah ok, I would have carried on unless told to stop or change frequency but I’d definitely get them done before your appointment.

[Skyler66 in reply to KittyJ]

Thank you already booked one in for this week thanks again much appreciated

[Skyler66 in reply to KittyJ]

Thanks again for your advice

[snotts]

I started mtx last week and have blood tests booked every two weeks for the next couple of months, then going to monthly blood tests.

On a separate note, when did you first notice A difference/feel it work? I'm on steroids while it kicks in but desperate to get off the roids and feel some relief

[Skyler66 in reply to snotts]

Hi snotts I was on prednisone for 9 weeks and they were brilliant the mtx worked well for me until last week I've been on mtx for 18 weeks, I'm going through pain and swelling again so I assume when I have my appointment they will increase the dose (maybe) hence the advice about booking blood test before appointment wasn't really told much, hope they work well for you.

[Hidden]

I don't live in the UK but when first on methotrexate I had bloods done monthly and then when I was fine with the methotrexate they did them three monthly. I would certainly have some . Good to see how your inflammatory markers have responded to the treatment, especially if you are in pain. I hope it goes well.

[Skyler66 in reply to Hidden]

Thank you booked a test for this week thanks again for the advice

[Hidden in reply to Skyler66]

You are welcome. Good place for a problem solver. I scroll about here when i have an unsolved issue.

[Skyler66 in reply to Hidden]

Good plan thanks

[BoneyC]

I've taken MTX for over 40 years and still have monthly blood tests as once or twice I was neutropenic.

I would have thought anyone new to MTX would have bloods at least monthly if not fortnightly to begin with. Check with your GP as they are probably being paid to look after you in between Rheumatology appointments and should be doing your 'high risk drug monitoring'.

[Skyler66 in reply to BoneyC]

I will do that thanks for the advice

[Plumcrumble]

Yes, I would book a blood test a few days before your appointment as it's the first thing they look at, best wishes Sarah

[Skyler66 in reply to Plumcrumble]

Thanks for that Sarah that's just answered my question perfectly as I asked thank you

[Plumcrumble in reply to Skyler66]

Your very welcome, hope your appo goes well 👍 💕

[greynot]

According to the 2017 British National Formulary, on Mtx we should have blood monitoring every 1 - 2 weeks until therapy is established and every 2 - 3 months thereafter. It also says local protocols may vary.

Round here the rheumy tells the GP ractice and the patient of the frequency required, and it's up to the patient to make the appointments with the surgery.

One of the nurses said NICE had extended the frequency at the height of Covid. I went from monthly to 2 monthly. Also, during the recent blood file shortage I didn't have my test cancelled - the nurse said Mtx testing was still priority. (I'm on 20 mg orally)

[Skyler66 in reply to greynot]

OK thanks for the advice