Blood test frequency

[mld78]

I have run out of Methotrexate. It’s not in my repeat prescription bag from the pharmacy. Phoned GP who say I need blood test every 8 weeks. But Rheumatology consultant says every 13 weeks. GP furious with hospital but I’m stuck in the middle. Now trying to get a blood test so I have a hope of getting a prescription for next week sometime. Of course it won’t be ready for Monday, but it may arrive by the following Monday. Then I won’t be able to get the repeat at the same time as other meds! I’m fed up. Feel as if it’s my fault. I just wish medics would talk to each other.

[marie66]

Hi it’s not your fault! They should communicate better than that. Just order again with the rest of your repeats, you never know they might just slip it through and your repeats will be back at the same time. Worth a try! M x

[mld78 in reply to marie66]

thank you for the advice. I will try to slip it through.

Actually this week I got a generic letter from the GP saying they won’t prescribe Vitamin D anymore. A consultant had prescribed it for me and it has helped my health a lot. I ticked the box on the online repeat form and it has been accepted. The system is faulty!!!!

Thank you again. M.

[marie66 in reply to mld78]

I’d keep requesting it anyways. It can’t be true everywhere as my hubby has just been prescribed large doses vit D to then continue on a maintaining dose indefinitely.

[Gottarelax in reply to mld78]

I have low iron and vit D and in both cases I’ve just been told to buy it otc.

[greynot in reply to Gottarelax]

I'm currently being prescribed iron and told to get vit D otc!

[ABwn in reply to mld78]

Just accept it and think how lucky you are.

[Sheila_G in reply to marie66]

Hi. When I had a similar problem to yours when my GP was being over cautious, I contacted my Rheumatology nurse and she gave me a prescription to collect that day. Worth trying yours.

[Hidden]

They will not issue Mtx if a blood test is due (sounds like this is a communication error). Tell the GP Surgery you need your blood monitoring done *today* and explain why.

Look through your Rhuematology notes. Have you changed dosage recently? I used to have monthly bloods whenever I had a change in meds.

Phone/ go into the pharmacy and explain what has happened. As soon as you get your Mtx take them. You may have to start having a new Mtx day… ensure you stick with the ‘new’ day.

It is incredibly stressful when this happens. Sort out as much as you can and take care.

[mld78]

I rang the surgery at 8.01. And am awaiting their call back. You don’t wait on the phone listening to awful music. Yes, I’m going to ask for a blood test today but by the time they get back to me …. I haven’t changed dosage for years. Rheumy then instructed me to decrease my blood tests but obviously hasn’t informed my GP! He said I was wasting their money.

Thank you for your advice

Anyway I am smiling! M.

[Hidden in reply to mld78]

🤦🏻‍♀️..

[marie66]

‘He said I was wasting their money’.

Cheeky toad!

[mld78]

hi everyone

It’s sorted. Going in person to the surgery! Two people used their brains. Computers. It was the IT Ssystem that rejected the request.

[helixhelix]

when GP calls back can you ask that they give you a one week emergency supply to stop you flaring?

[greynot in reply to helixhelix]

Good advice helixhelix

[MadBunny]

Glad it's sorted. Nothing is straightforward these days , is it🙄

[mld78]

exactly! It was the IT system!!!!

[Gottarelax]

if your GP requires more frequent testing why doesn’t the GP write the request? Mine did when the same thing happened.

[BoneyC]

Explain that you have run out of MTX and need a dose for next Monday and you have been following the Consultant's advice, i.e. bloods every 13 weeks and as far as you are aware that has not changed.

Why can't GP phone Rheumatology and query it if they are that pedantic? You should not have to suffer missing a dose or the extra stress of sorting out the headless chickens!

Just read you've sorted it!

[AW600]

are you in the UK? Surely the pharmacy can get your MTX ready for you in time? Ask for extra tablets to then line up with when your others run out, then next time you can order all at once.

I only have 8 weekly blood tests because they have been happy with my results. If there is a change in medication they make it 4 weekly again. CRP only gets checked if there is a change in symptoms, it’s too costly for them to monitor this every month

[mld78]

hello everyone. My blood test is due on 1st August. As I will be away for a week I’ve arranged for it to be done the previous week. The muddle came as both consultant and GP agreed to change me from 8 weekly to 3 monthly blood tests, but the surgery’s IT system hadn’t been updated. The prescribing staff didn’t realise it was an IT issue until I turned up with my diary and counted through the weeks.

It’s all sorted.

But the system has one fault. If your hands are useless and tablets go under the cooker you lose out on your meds. One day I will retrieve all of my tablets!!! Yes, I have tried opening them over bowls, soft mats, beds etc. I just can’t find a me- proof way of not losing any!!

Many thanks to you all for your advice and comments.

[Dylan62x]

That's just it though they never seem to talk to each other do they and its the patient that suffers in the long run

[wilbertjellyfish]

Don't chat. I was off mtx for a few months because I was ill. Then the pharmacist in the GPs wanted me to go back to two weeks bloods and they are only giving me two weeks at a time. Rheumy said monthly X 3 was ok. I've done that (there were phone calls and I expressed my opinion) still only getting two weeks meds. 🙈

Told the lovely receptionist the other day I feel like a pin cushion.

[Seatgeorge]

I book mine at 8 weeks by the time I get the appointment it's usually 10 weeks, they should have explained that to you when you first went on it, if you don't get the bloods done they won't prescribe the drug, good luck.

[Happy5]

Had similar in the past GP asking for monthly when RA consultant said could go 3 monthly.

So I've compromised by having it done 2 monthly, think GPs more concerned it's monitored prior to prescribing MTX.

Sorry you've had a mix up all frustrating as we know.

[cyberbarn]

Everyone's ICB will have a shared care agreement between rheumatology and primary care. Get a copy so that you can say 'as per the agreement between rheumatoid and primary care, I have to have blood tests every X weeks and you have to write the prescription.'

Last time the GP receptionist rang me to say that the surgery pharmacist wanted me to have my monthly blood test before she would renew the prescription, I said I would like her to read the shared care agreement and then work out how long I have been on MTX and how often I should have blood tests and then renew my prescription. The next day the prescription was renewed!

We shouldn't have to explain the shared care agreements to them, but it seems that often we do.

[mld78 in reply to cyberbarn]

hi. All humans were in agreement, it was a fault with an over enthusiastic computer system. All sorted now. But thank you.

[madme1]

Hello, in my experience I've been told Methotrexate is a controlled drug, that's why it is treated differently or in a separate package from your other meds. I sometimes have to get in touch with chemist or gp to query why it has not been sent.

I do know what you mean about a lack of communication, and think it can be fown to cost. Mine was over blood forms with the doctor saying it should be the hospital that issues them, and the hospital saying it should be vice versa. Meanwhile I would spend weeks trying to fight between them to get hold of one. That was in England, in Wales its no issue, I simply tell the receptionist and she has them there thank god.

I started having to go for bloods every month, then it was two or three months, here in Wales it's every 6 weeks, as my infusion is every 8 weeks. Hope you get the help you need it's all very confusing.

[Retirednhs]

It's not your fault it's poor communication by both the hospital and the surgery as you have had it before as its a repeat prescription the surgery should know you need it and as its a standard drug for RA patients surely you are not the only patient on Methotrexate and they should know it's a 3 monthly repeat blood test. I suggest you contact your Consultant or the help line to see if the hospital pharmacy can provide one for you in the interim , but if they can't onexweek without is not too bad as that's what you do on antibiotics leave it off . Good luck

[mld78 in reply to Retirednhs]

it’s sorted. Thank you. As I’d had really high ALT levels I’d been having very regular blood tests. ALT is being sorted by Heptology so now back to three monthly blood tests for RA. It was the computer system that said no, and people couldn’t over ride the system. A man has now changed the info in the surgery’s computer system and I have picked up my medication. Heptology blood tests are being done in hospital. I’m going to need a blood transfusion (joking), but it would be so much easier if I only had to be attacked once. The HCA at our surgery is the best for blood tests. She’s a star.