Rheumatoid arthritis : Hi everyone I'm at a loss with... - NRAS

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Rheumatoid arthritis

Eva9 profile image
Eva9
51 Replies

Hi everyone I'm at a loss with my GP I rang for a prescription on Friday for my Methotrexate and she's refusing to give a script out as I haven't had my bloods done (even though I'm due to go tmrw for the bloods) do you have to wait on a BLOOD RESULTS to be able to continue I'm due to inject this Wednesday and I don't want to have to fall behind

51 Replies
Boxerlady profile image
Boxerlady

Regular blood tests are a requirement for my Methotrexate; my injections are provided by the hospital pharmacy and they always check that my blood tests are up to date before supplying them.

The rheumy nurse explained that when I started so it's surprising that you weren't told the same. She also told me to ring up for a prescription when I had 3 left but that might be because the hospital pharmacy is inclined to be rather slow 🙄

Hopefully your test results will be OK and you'll be able to get your prescription filled 🤞

reallyawesome profile image
reallyawesome in reply to Boxerlady

Interested to know how many injections are prescribed at a time?

Boxerlady profile image
Boxerlady in reply to reallyawesome

I get 12 at a time.

Moomin8 profile image
Moomin8

Hi, This seems a bit harsh to me. But I suppose it depends on the full picture. How long have you had methotrexate? How have your bloods been up until now? If the answers are - for a long time, and perfectly fine, then they should probably allow it. Call your clinical nurse team and leave a message.

I have regular tests as most of us do but I’ve never been refused a prescription because the test is not up to date

AgedCrone profile image
AgedCrone in reply to

I get “you’re on the naughty step” type letters if I don’t get my blood tests on time.Mind you this time I’ve got a letter saying I haven’t had a blood test since December 2020........so either I dreamed the one I had before my infusion last month.....or someone has mislaid it!

LoneEra profile image
LoneEra

Seems a bit harsh. As others have said, call your rheumy team tomorrow. But try not to stress about it too much - one week missed isn’t the end of the world x

Egpa profile image
Egpa in reply to LoneEra

Your rheumatology nurse might be able to get the doctors at the hospital to perscribe you some to pick up from the hospital. I would give them a ring. But don't panic a week missed is not a problem.

Charlie_G profile image
Charlie_G

My GP surgery once threatened to withhold my Leflunomide because they didn’t have an up to date weight and blood pressure, and I was told from the start that my bloods had to be up to date to receive my mtx tabs. When I switched to injections and they came via a home care company, though, no one ever asked or checked. I think GPs can be a bit more precious about things: there is always a need to be cautious, particularly in the early days of treatment with a new drug, or a change of dose, but it sometimes seems to be taken a bit too far. I’m not advising you to do the same, but if it were me and they were being adamant they won’t give you the script, I would get the bloods done and then delay my jab by a couple of days to get the results and sort it out. Two or three days won’t make much difference, particularly when you consider we have to skip a whole week or more when on certain antibiotics and things.

AgedCrone profile image
AgedCrone

In short yes you do have to wait until your doctor has seen your latest blood results before a repeat prescription will be given.It depends on which drug you are taking...but on some drugs you need bloods every couple of weeks until your doctors are satisfied none of your organs are being adversely affected.

Have a word with you Rheumatology Nurse...she will know which drug you are on and how often you will need to have the blood tests for the next few months.

Blood tests come back very quickly so if you get a test tomorrow you should get your prescription in time.

Carolsos profile image
Carolsos in reply to AgedCrone

My blood tests are now every 3 months and I put my script 10 days ago and not mtx so now I have to ring doc up to ask where it is. So flipping annoying!

Mmrr profile image
Mmrr

I've never been refused a prescription due to blood tests not being done, although I do have them undertaken regularly.

Eva9 profile image
Eva9

Thanks everyone for your feedback I started the Methotrexate injections (first time)on the 19th May leaving it that I'm due for for bloods Wednesday I can't understand how it works if your not given the script until bloods come back (that's if you have to wait) that you will be on time with this weekly medication if it were down to my GP it means I'd have to have bloods done Before the 2 weeks have arrived I understand that the bloods are important to be done but my GP is taking this too far with me (feeling angry ) I've left a message with my rheumatologist specialist/helpline and getting bloods done in the morning.Very grateful

Thanks again

AgedCrone profile image
AgedCrone in reply to Eva9

Your GP is not prescribing your MTX.....she issues the prescription under a shared care agreement with your rheumatologist who gives her written instructions as to when she should issue the prescription.You have only been on MTX a very short time & as I remember you need two weekly blood tests for the first few months?

So as you say your test is not due for a few days...but if your GP issues a scrip before she sees those test results she will be breaking that agreement...& should there be any problem with the test results....it is your Rheumatologist who would be responsible.....not the GP......as the rheumy is the prescribing physician.......not your GP.

In fact she is following the rules for your good....so you should be glad she is not just box ticking as many do.

Mtx can have some very serious side effects that need catching before they do any harm.

Hope you get on well with it....I had 7 years on it & I was very disappointed when it stopped working for me.

helixhelix profile image
helixhelix

If you are so new to MTX it is very important that you have had the blood tests so I do think your doctor is being properly careful. It is annoying that this wasn’t planned in advance, but hopefully things will settle down into a better routine.

When I started I had weekly blood tests, and only got two weeks of tablets at a time. Now I only have to have blood tests every three months, but can still only get a month of injections at a time.

Sheila_G profile image
Sheila_G

Yes we do. The reason your GP won't give you a repeat without blood tests is because it is vital that you are well enough to take them. Certain factors in your blood will mean it is not safe for you to take your medication. It is to protect you from serious problems. Book in for your blood test asap. You won't have to wait long as teats are all sent to GP electronically now.

Sops profile image
Sops

I was turned down for an essential drug for the same reason and I had had my bloods taken, no idea what is going on. Good luck and be firm.

Bookworm55 profile image
Bookworm55

I missed a 6 weekly blood test in April 2020 at beg of COVID because I rang the surgery (where I have them )to book a test and they told me they weren’t doing them. Turns out they forgot to add ‘unless they’re for medication monitoring’ . My next mtx prescription was then stopped .It took many phone calls and conversations through the window at the closed surgery to get the mtx but they were able to give it once I had BOOKED a blood test.

Gilliancheche profile image
Gilliancheche

My white cells are always borderline at best so I have to have fortnightly blood tests. I have them done at the hospital for quickest results (via my surgery it can take a week for the result, hospital next day) . Can you see if your local hospital can do a Blood test for you?

Nuttyshirlz profile image
Nuttyshirlz

Hi I try to get my bloods done about two weeks before I’m due to order mine. I’ve a reminder in my phone so don’t forget. But that’s because I forgot and was late getting it done. After it was done i rang drs and was refused and told to give it 48hrs for my blood results to come back. So since then I’ve put it in my phone lol

AKA13 profile image
AKA13

I had a similar problem a couple of years ago. When I made enquiries I was told that my blood tests were not up to date. That fact was, according to my records they were and I was due the following week. I gathered that there must be blood tests done within a certain time frame, 6 weeks I think, of the date medication is issued. When I have three injections left and if I have not heard about my delivery, I call them and it prompts a delivery and prevents an oversight.

Goldsky profile image
Goldsky

Yes Eva9, they definitely look at your bloods before prescribing the drugs. I have to have my blood taken every 3 months. Last month I was obviously a week later than they were expecting as they wrote to me about it. The blood results and letter must have crossed in the post.

So yes, definitely, definitely get your bloods done on time. Best wishes.

ATSF profile image
ATSF

My wife and sister in law take it and I've never heard of this happening.

helixhelix profile image
helixhelix in reply to ATSF

Maybe because their blood tests are always up to date?

ATSF profile image
ATSF in reply to helixhelix

They have changed the system in this area now, we have to fix our own blood test appointments on line or phone.

AgedCrone profile image
AgedCrone in reply to ATSF

Probably because their blood tests have always been available to their GP when a prescription was needed?

ATSF profile image
ATSF in reply to AgedCrone

In this area your GP’s no longer get the results because the Hospital Consultants and the GP’s have had a disagreement.

AgedCrone profile image
AgedCrone in reply to ATSF

Sounds normal!But with shared care agreements that would surely be over ridden.....or nobody on shared care would get a scrip from their GP!

Happy5 profile image
Happy5

Yes first couple of years of treatment this stricter approach was taken.I was only allowed 4 injections at a time followed by monthly blood tests.

Both have increased in amounts and time length after over a decade of treatment.

SueB profile image
SueB

Once I went to a different pharmacist to fill my prescription and they asked to see my record book for proof my blood tests were up to date. Luckily I had it with me. There have been times when I’ve had calls from the GP telling me not to take it for a week or two because of problems with my results. Regular blood tests really are important.

AgedCrone profile image
AgedCrone in reply to SueB

In twenty years I have never had a blood test book...I think they wait until you request a scrip...then take great pleasure in telling you your blood test is out of date......then they take more time, writing you a long letter telling you how vital the tests are.I gave up trying to work out how the system is supposed to work years ago!!

in reply to AgedCrone

I don’t have a blood book either and the pharmacist asks every time. When I say I don’t have one she rolls her eyes and says „well I‘m going to have to tick no then“...then she hands me a bag full of metoject 🤷🏼‍♀️

AgedCrone profile image
AgedCrone in reply to

When you think about it it’s like going back to 1st grade isn’t it ....you have a book to write your name in so you don’t forget who you are!But surely everyone can remember when they are told to have a test....then they just quote their NHs number for the pharmacist or GP to check.

But of course...that is far too simple! Plus one half of the system can’t contact the other...so until a decent system is introduced...it’s a Post-it note on the caledar!

in reply to AgedCrone

It is truly ridiculous. GP can’t access the bloods done in the hospital the rheumatologist they referred me to works 🙄. Outpatient pharmacy doesn’t seem to be able to either although the inpatient pharmacy can 🤷🏼‍♀️At least my scripts and bloods are currently still being organised and monitored by rheumatology themselves.

It doesn’t seem inherently sensible or safe and seems to rely on people being on the ball and taking responsibility themselves..

AgedCrone profile image
AgedCrone in reply to

I do think we should take responsibility...so that if we end up needing care away from our home ground.....we know what we need.......but the GP, the pharmacist & the hospital don’t seem to be singing. from the same hymn sheet do they?One item on my prescription was always left out...I went into the pharmacy during lockdown and said look you deliver X number of items but it always miss out the Y item...why?

I was told I had to phone every month to confirm that I wanted that particular item.

But on the prescription it said every 28 days. So I wrote a letter to the GP who had prescribed the item and she came back and said yes that was for the first time to see how it affected you if it was alright you would continue to receive it. But nobody had asked me if it was alright I & told me who I needed to tell that I want to keep taking it .....I just don’t understand how the system works... and I don’t think the people running it do either!

in reply to AgedCrone

It’s just so disjointed 😩All the information is there and yet not everybody who should sensibly have it can access it.

I def agree we should take as much responsibility as we can but not everyone can and it doesn’t seem safe to end up relying on the patient checking chasing and relaying info!

I think you are right - nobody really quite understands how it works.. 🤷🏼‍♀️

AgedCrone profile image
AgedCrone in reply to

Sadly.....Until politicians understand throwing money at something doesn’t necessarily make it better the NHS will continue to struggle.The figure of £2.7 million keeps being thrown into the equation but how many £2.7 millions are there?

We are seeing it right now with the 21st of June looming .....who is going to take the decision and where is the information that decision is decided upon going to come from?

The politicians who want to be loved or the scientists who tell it how it is...or even how it could be?

It’s not an easy decision..But I am with Professor Van Tam rather than the politicians.

I’d far rather miss my summer holiday then catch Covid.... no matter which variant is being tossed around.

in reply to AgedCrone

You are so right, but I have found that direct contact with the Practice Manager and the Practice Pharmacist - both eminently sensible chaps - has worked wonders.

SueB profile image
SueB in reply to AgedCrone

It’s more a question of knowing what your results are- especially when things aren’t going well

SueB profile image
SueB in reply to AgedCrone

I was given one originally when diagnosed in 2009 and have just asked for replacements as needed. I have 9 tucked away. I make a point of keeping track of all my blood tests so I can watch trends. I don’t like just being told”they’re fine”. As I have had lots of issues with my neutrophils this has been useful.

in reply to SueB

I can actually log into my hospital record and see my bloods - in fact it emails me to tell me the results are up a few hours after I have my bloods done. But my GP can‘t see my hospital bloods!!! Only the ones I have done at theirs. And those have a tendency to „go missing“I can see why a handheld record would be useful.

in reply to

Log in to a hospital record? You and I live on different planets! And I attend a large and very prestigious hospital, but I don't think they believe in letting patients have direct access to results. If I had the blood tests done at the GP surgery, I would be able to log on and see the results, but the ones that the hospital communicates to the surgery are not available for me to see as they are "on a different system".

LoneEra profile image
LoneEra in reply to

I can’t even see mine at the GP let alone the hospital!

in reply to LoneEra

I can see mine at the hospital but not the GP 🤦🏼‍♀️

in reply to LoneEra

The only reason patients at my GP practice can see results of tests ordered by the GPs is because the Practice Manager is very enterprising and volunteered the practice to take part in a trial of the system, which eventually should be used in all practices in Salford. He is immensely frustrated that having the hospital on a different computer system means that not all the GPs can get results of tests ordered by the hospital.

Reading all the posts here, there are so many different systems it's clear that the NHS is anything but "national" in this respect.

in reply to SueB

I never know what my results are. There is no mechanism for letting me know.

in reply to SueB

Record book? What's that?

SueB profile image
SueB in reply to

I was given a little book with all sorts of information and places to record what I was taking and to record test results. It has been very helpful and has just been replaced by my Rheumy nurse whenever it was full. My HP uses Systems- online which means I can see all my test results within 3 days of the test. Before that I used to go into the surgery and get a print out of the results. I would be very upset if I couldn’t see my results. We are entitled to see them although it might need a bit of pushing sometimes. My GP has said it is good that I am a proactive patient. It’s my body and I expect to know exactly what is going on. Good luck with everything.

in reply to SueB

I see. It's useful if you can see your results soon after the test. I did actually ask at the hospital if there was any way I could have my results and was told they used to have books, but don't any more. However, they used to write the results in the book at the next appointment, which for me, now, would be after 3 months! As I think I put in another reply, not even all the GPs can bring up my test results on their computers. Currently I've no chance except by asking at the next blood test, which I do, but some nurses oblige and some don't. You're right that we're entitled to the results - in an ideal world - but there has to be a mechanism for getting them. Your area has that. Mine doesn't.

On the other hand, when my liver function results were going haywire, I was notified in no time flat - with more than one phone call plus a couple of letters. So I don't worry too much. I'm actually immensely proactive, but there's no point fighting this one because I know (from speaking to the practice manager) that until they are all on the same computer system there is no way for me to be able to get the results online. I've grumbled mildly to my consultant, but I reckon she also, like me and the GPs, has to just put up with the system for now.

Knip profile image
Knip

You really do need your blood test doing, but a few days of being late with your MTX shouldn't be too big a problem. If a drug reaction is occurring then it will normally show up in your bloods. Your GP is erring on the side of caution, probably quite rightly, although it is very frustrating for you.. Hope your bloods are OK . When put on a new drug the hospital pharmacy usually has to supply them...but after three months or so the GP can take over with shared care. Take care, Better safe than sorry.

RachelD1972 profile image
RachelD1972

It’s tough in the early days when you’re trying to find your feet with how everything works. I guess different regions work differently. I photocopy my blood forms, diarise when they’re due (mine are 8 weekly) and then just book the app.. The hosp arrange my prescriptions. It is annoying however as my GP also wants blood tests and GP/Rheumy claim they can’t read the others results so I end up getting two lots done! Hope you get it all sorted soon x

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