Methotrexate is reducing harmful?: I have RA. I am... - NRAS

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Methotrexate is reducing harmful?

Colaba profile image
48 Replies

I have RA. I am currently on Methotrexate which seems to be working. Currently I take 6 tablets every Thursday.

Does anybody know whether a 33% reduction in Methtotrexate for two or three weeks is likely to have a detrimental effect on my condition? I presume the dosage was determinedas the result of some kind of clinical judgment, certainly my condition seems to be managed.

The problem arises as follows. I have to go to France on 11th February and, in order to complete some tasks I to do with selling a boat I can no longer use because of RA. I may have to stay into March, maybe for two or three weeks.

I requested additional supplies of medication when I reordered but on Thursday 1st February when I collected (and took 6) found that they had supplied 4 weeks, as usual with a note that their policy is only to deliver 4 weeks at a time.

My Methotrexate will run out on 22nd February. Currently I take 6 per week.

I shall therefore have to return to UK before 29th Feb.

If I reduce my intake of Methotrexate from 6 to 4 tablets per week from next Thursday - that is for three weeks - I could return on 13th March and collect my overdue monthly supply of medications, resuming Methotrexte at 6 per week as from 14th March.

I fully appreciate the inappropriateness of mixing clinical and 'business' needs in this way.

It will be both inconvenient and quite expensive to speed back to UK to collect tablets in the week 22-29 February and then return to France at once.

It is an interesting conundrum. I have been 'relatively' happy on 6 Tablets per Thursday.

Wise words will be welcome - not abuse,

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48 Replies
AgedCrone profile image
AgedCrone

Sorry….We can’t advise on that….you must ask your doctor. You usually need blood test results before you get a scrip for Methotrexate…depending how long you have been on it….only your doctor knows if you can chance the drop in dose.

Could you arrange to have those tests in France? It has been done before…presumably you know somebody there who could organise things?.

Runrig01 profile image
Runrig01

How often are your bloods for MTX? Drs can issue more, I get 2 months at a time, but my bloods are 3 monthly. GPS can also increase the length of prescription to cover for holidays, again, as long as no bloods are due before. It may be they would be happy to repeat bloods early, in order to issue more.

I’m having foot surgery on Monday, and my gp has prescribed all my meds early, including MTX, so I don’t have issues getting to the chemist, whilst non weight bearing.

As for reducing your dose only your rheumatologist can answer that. MTX has a half life of 5.5-8hrs, which means every 28-44hrs the level drops by half, so over 3 weeks, it could impact on your RA. Especially if you’re only taking 4 instead of your usual 6, so it won’t rise as much, in between, when you do take 4.

KittyJ profile image
KittyJ

You should talk to your doctor who prescribes it, explain you won’t be in the UK and will run out. I’ve done this before when going away. We can’t advise on whether you can lower it or not but I wouldn’t risk a flare if it were me.

welsh12 profile image
welsh12

That's ridiculous I get 3 months supply at a time ask your gp

Amnesiac3637 profile image
Amnesiac3637

Just have a word with either your GP or rheumatologist - whoever prescribes for you. Life comes before rigid protocols - if you have to go away, you have to go away full stop so they have to work round you!

helixhelix profile image
helixhelix

I would push to get that extra 2 weeks supply. Your doctors are being narrow minded as it is perfectly possible for them to give you a longer supply.

However if you have been on it a long time then don’t panic. I usually fund that it takes 2 weeks for me to start to feel it if I have had to stop MTX for any reason.

Sadly since Brexit you can no longer get a UK prescription filled easily in France.

AgedCrone profile image
AgedCrone in reply tohelixhelix

It’s not doctors being narrow minded HH ……In the UK ATM GP pharmacists are on such an economy drive they are not likely to be easily pursuaded to hand over pills just because somebody is going abroad. I’m sure a lot here have had their prescription meds changed to a cheaper version in the last few months

bpeal1 profile image
bpeal1 in reply toAgedCrone

That’s not true. My rheumatologist always prescribes 3 months of medication at a time and my GP is always happy to prescribe early or prescribe extra if I’m going on holiday etc.

AgedCrone profile image
AgedCrone in reply tobpeal1

Well you are extremely fortunate. Here I was telephoned & asked by the young clinical pharmacist if I would change a med I’ve been in for a long whiles & was told outright it was because”the one you are on iss very expensive” I had to contact the Snr Partner of the practice to explain that where it said on my prescription “0nly this med- no substitutions” ..it meant exactly that!

bpeal1 profile image
bpeal1 in reply toAgedCrone

I wasn’t talking about substituting cheaper generic drugs for branded ones. I’m all in favour of that (obviously unless there is a clinical need for a specific brand). I was talking about not prescribing more than 4 weeks of medication, especially if you’re going abroad.

AgedCrone profile image
AgedCrone in reply tobpeal1

But as has been mentioned when you are on MTX & some other drugs, the pharmacist must have sight of an IN DATE blood test…..he won’t prescribe even one pill I he doesn’t have that!

Different drugs have different conditions. .I have an infusion due shortly which used to need that blood test within two weeks…now it is 4 weeks……I get the blood test & I have to wait for an infusion slot date until the lab confirms to the biologics nurses the test has been received & is OK.

Does that make things clearer?

bpeal1 profile image
bpeal1 in reply toAgedCrone

I appreciate that but I’ve still never had a problem getting extra medication when travelling overseas.

Different health authorities also have different systems. My pharmacist has never seen any of my blood test results (even when I was on methotrexate). My blood test results are checked at the hospital before they issue a prescription. Some health authorities the GPs check the blood tests. Even when I was on 4 weekly blood tests I was given a prescription for 3 months which was issued in one go. My advice below to speak to whoever issues the prescription still stands.

AgedCrone profile image
AgedCrone in reply tobpeal1

It,s the laboratory who check the blood tests….let’s leave it there shall we? We don’t know the situation of the person who started this except he is going abroad at very short notice.

bpeal1 profile image
bpeal1 in reply toAgedCrone

Exactly - and that’s why they should speak to whoever prescribes it to see what can be done.

helixhelix profile image
helixhelix in reply tobpeal1

Nor me, and on NHS website it says 3 months is allowed.

Kags1068 profile image
Kags1068 in reply tobpeal1

Hi bpeal

I'm totally with you on this one. I have 4 weekly bloods (more often at times). My blood forms are issued by ,rheumatology, and the results go to rheumatology. My GP's issue all my prescriptions, apart from Rituximab infusions which obviously are arranged by the hospital. I use an independent pharmacy that has nothing to do with the hospital or GP's, and they have no idea what my blood results are. The GP decides whether or not to issue the prescriptions. If, like most others have said, you may be going on holiday or we are coming up to a bank holiday, Christmas, Easter, etc, they will usually issue another prescription in under 4 weeks if there's a risk of you running out of medication. Purely at the Doctor's discretion.

I've been on Methotrexate over 30 years, as well as steroids, Cyclosporin and Hydroxychloroquine. The same procedure has applied to all of these drugs.

My rheumatologist also arranged a Rituximab infusion date in February for me before he'd got any results from the extra bloods he ordered, and pending a hip aspiration next week to double check for a fungal infection in my prosthesis that was supposedly picked up on a previous aspiration but is now being queried. He felt it was more important to have have an indusion date in place if things are ok, and then cancel if necessary.

The point is, as you say, there is a lot of variation in how different health authorities, GP's and Consultant's do things, and the advice to first and foremost check with whoever normally issues the prescriptions makes complete sense and it's certainly where I would start.

I hope the poster can get it all sorted, as it would be a shame for him to miss out on medication that seems to be helping, when (fingers crossed) it may not be too onerous to sort out.

Best wishes 😊

wilbertjellyfish profile image
wilbertjellyfish

You likely need to actually speak to the GP. They may extend your script and give you more. I order my meds online and depending on which GP does them sometimes they read my notes regarding changes sometimes they don't.Assuming you can't get more then it's your decision regarding taking slightly fewer for longer. You understand that it could cause a deterioration in your RA control but that's the risk you take.

AgedCrone profile image
AgedCrone in reply towilbertjellyfish

You are right…when you order on line it does depend whether your doctor or pharmacist reads your scrip request. Despite me writing that my rheumy has stopped A & B now I’m on X…..A&B are still sitting on my meds list. Sometimes they appear even if I don’t order them…..so I go through my meds before leaving the surgery & take out&return what I no longer need.

Gilliancheche profile image
Gilliancheche

Usually whoever dispenses your medication will make an exception to the 4 weeks only if you inform them you will be away. I know my surgery does this

AgedCrone profile image
AgedCrone in reply toGilliancheche

One more time…. if the next prescription is outside the date of the latest blood test…a doctor can write all the prescriptions under the sun & no laboratory will provide the drugs…& it looks like that could be the problem here .

Paula-C profile image
Paula-C

I'd ask again at your doctors. If you can't speak to a GP ask to speak to the practice manager. I have a prescription for three months at a time so can't see why you couldn't of got one to cover you when away.

AgedCrone profile image
AgedCrone in reply toPaula-C

Every one seems to be ignoring the fact…..that when you are on MTX….you need a in date blood test…or the pharmacy is not allowed to dispense the drug.

Paula-C profile image
Paula-C in reply toAgedCrone

I went six months between blood tests during covid and still got my prescriptions. I'm now back to three monthly ones but have had prescriptions done before bloods are due.

AgedCrone profile image
AgedCrone in reply toPaula-C

But Covid did rather skew everything didn’t it…my 6/7 month infusions dragged out to 15 months…I tried to sneak that in again..but no chance….I got the naughty step letter from the Lab who monitor all bloods.

GordonEdin profile image
GordonEdin in reply toAgedCrone

UK? The system that I have always experienced is that the GP will only issue the prescription after checking that blood tests are not overdue. The pharmacist then issues the drugs as per the prescription without further checks (unless the prescription is plainly wrong or interacts with another drug.)

AgedCrone profile image
AgedCrone in reply toGordonEdin

GPs do not prescribe MTX…..it is prescribed by a Consultant,& under a Shared Care Agreement the GP writes the prescription but does not prescribe it. ..& cannot alter it unless the Consultant changes the dose.

The pharmacist who dispenses the drug is responsible for checking the blood test results are in date for that prescription .When I was on Mtx I was sometimes refused if the results had been held up…but it usually worked out OK.

Paula-C profile image
Paula-C in reply toAgedCrone

How does the pharmacist check your bloods are up to date? I get my mtx from boots in town and I would imagine they can't access my medical notes. When I first started mtx I was told by the specialist nurse that when collecting my drugs from the chemist the pharmacist should ask to see my mtx monitoring booklet to check my bloods are up to date. In all the years I've been on mtx it's happened just once.

AgedCrone profile image
AgedCrone in reply toPaula-C

I really don’t know how it works at a chemist like Boots..I have always had a GP with their own pharmacy… never had a Mtx book….or maybe I did but never used it..I just had a card saying I was on non oncology Mtx dose with a contact phone number for emergency..They can maybe access your nhs or hospital number by a code. ..& it will show latest blood result…but that that is just a guess.

I don’t worry about things like that…I naïvely believe the one in the white coat knows what they are doing…

If there is anything i feel Inreally need to know-I just ask.

bpeal1 profile image
bpeal1 in reply toAgedCrone

High Street pharmacies don’t have access to blood test results. I think the difference here is that your pharmacy is linked to your GP practice so they have access to your medical notes and so they have left it to the pharmacist to check your blood tests rather than the person writing the prescription.

AgedCrone profile image
AgedCrone in reply tobpeal1

As I said previously….let’s leave this now & .continue to get on with dealing with the system we are familiar with.

Kags1068 profile image
Kags1068 in reply tobpeal1

Precisely!! As you and others of us have been trying to point out, there doesn't seem to be a standard procedure across all surgeries. They vary, and the important thing for any of us, is knowing how our own surgery works. Many of us use chemists that are totally independent of our GP surgery, and therefore, these chemists have absolutely no idea when/what/if our blood results are. The GP sends the prescription electronically, and the pharmacist dispenses it. So, for some responses to keep saying that a pharmacist has to have sight of a recent blood result before issuing medication is incorrect. If your practice has it's own pharmacy that may be so. If not, it won't. It sounds like your procedure is similar to mine, and the pharmacists have no input whatsoever.

Hope you are ok😊

KittyJ profile image
KittyJ in reply toPaula-C

I use Boots too and they’ve never mentioned my bloods/tests either.

Kags1068 profile image
Kags1068 in reply toAgedCrone

I'm afraid not everyone's surgery seems to work like yours! I'm not officially under "shared care," but my prescriptions for DMARDs (Inc MTX), have always been issued by the GP - for over 40 years. My bloods are wholly monitored by rheumatology. The GP does like to get it in writing from the Consultant first before changing any DMARD dosage, but if there's any paperwork delay, will take my word for it and change things. They only ever ask when the date of my last blood test was - the GP's don't get the results as the hospital refuse to send a copy to both the Consultant and the GP! The pharmacy I use (which is not connected to my GP) has no idea whatsoever about anything to do with my blood results. I have never had a MTX prescription refused in over 30 years. It seems they all have their own way of doing things!

AgedCrone profile image
AgedCrone in reply toKags1068

You won’t have been officially informed “There is a shared care agreement”, it just happens. But it’s my understanding that only a consultatant can prescribe Methotrexate…so that sounds like the arrangement you have in place. Your rheumy tells your GP the dose etc,& the GP signs the prescriptions.

Some GPs don’t like it because they think it demeans them in some way. I only found out many years ago when a new GP at the surgery I was with at the time refused to sign off on another Dmard, because he had no experience of it. But a chat with the consultant seemed to fix things. But it backfired because the drug didn’t suit me…so all the angst was in vain.

But why worry..as long as you get your medication ?

Mall profile image
Mall in reply toAgedCrone

I have 3 mthly blood tests and I am issued with 8 weeks supply of drugs from the pharmacy. The pharmacy has no idea when and what are the results of my blood tests. The GP decides whether or not to issue a script. As you can see from the two different time scales they don’t coincide but if my GPs happy with my last result and I am within 3 mths of the last test he issues it. Pharmacy has no say, all down to GP in my case.

Suzy-P profile image
Suzy-P

Try and talk to your GP again - as long as your bloods are up to date there shouldn’t be a problem. I am currently away for 5.1/2 weeks overseas and I explained my problem (I take 9 per week) that 36 tablets would last and my GP wrote me out a second script for 36 tablets to cover me. If not try and speak to a member of your Rheumy team. Good luck.

bpeal1 profile image
bpeal1

Speak to your rheumatologist or GP (whoever prescribes your methotrexate) and tell them the situation and ask their advice. Hopefully they’ll give you another prescription before you go.

Thingybob profile image
Thingybob

If you speak directly with your gp and explain they should be able to give you extra supplies. My rheumy says that if your Ra is controlled then missing a dose or 2 shouldn't affect things . But only if you are really well controlled .

marti profile image
marti

I would certainly be speaking to whoever prescribes your methotrexate - I have blood tests every 3 months and get supplied with 3 months tablets at a time. I would be asking to speak to a doctor as pharmacy staff can only dispense whats on your prescription. I have always found my doctor helpful if its going to fall within a holiday period and have never been refused extra tablets - Good luck

Flinda profile image
Flinda

I had exactly the same issue with my GP (except I didn't have a boat to sell).

I went to France for a long stay (7 weeks), to celebrate my retirement. No way would they prescribe more in advance.

So, I ordered them on-line as usual, my daughter picked them up from the pharmacy and posted them to me. They only just reached me on time!

It was stressful, costly and inconvenient, but had to be done, because my surgery would not budge!

RAat13 profile image
RAat13

I'd strongly suggest speaking to a professional. Either GP or Rheumy, no one here can advise you that this is fine or not, it's strictly for your healthcare. Can you not ring your GP or Rheum Nurse, you have 7 days. If you ring and explain the situation they can you the right advice or medication.Good Luck x

Colaba profile image
Colaba

I have no Rheumy nurse. I will try to contact the GP. I had presumed the pharmacy would have done that. They are part of the same practice.

Jollyjill profile image
Jollyjill

You should be fine with weekly dosage reduced from 6 to 4 for that length of time . I’ve done similarly with my Rheumatologist’s approval. I went off 6 to 4 6 month’s ago & am doing great! But each person’s case is different.

anglia profile image
anglia

I reduced mine for a few years and took 2 naproxen a day You might get a bit more pain but for three weeks I’d say ok I’ve stopped for two weeks with bad chest with no problem I’ve injected for about ten years you get three months delivered

Therapy6650 profile image
Therapy6650

speak to your GP asap. I get extra prescription to take with me whenever I’m going away. As long as your blood tests are up to date. Hopefully if you’ve been on methotrexate for a while you’ll be on 3 monthly blood tests. My GP is always happy to help me, so it shouldn’t be a problem. Good luck 🤞

NanaFifi profile image
NanaFifi

Hi Colaba

My advice would be to contact your GP and ask him/her to change your prescription to 6 or 8 weeks worth. In my experience as long as your bloods are ok there shouldn’t be a problem. I inject my mtx and as my bloods have been stable for years now I get a 3 month delivery. I have a place in Spain and come out for 6 weeks at a time and need an extra 2 weeks of my pain relief medications . I find that if you talk to your GP and explain your situation they are very understanding.

The other thing I’ve experienced is missing 3 injections in a row because I had a very bad chest infection and ended up with 4 courses of antibiotics. I didn’t experience any noticeable side effects but I’m definitely not suggesting that you skip your tablets.

I must stress I’m not a qualified doctor or nurse but simply sharing my own, personal experiences.

TheBoys profile image
TheBoys

Why not get some in France?I've been in Spain and run out. So I've gone to a GP online or a clinic who ll do a consultation over phone. I've shown them my online medical record , explained that I've had to stay on for whatever reason, no longer had stock and have had it prescribed.

Paul

Happy5 profile image
Happy5

As said we can't advise medically , but a couple of things, can you do econsult to explain your need & get another script? Sometimes 111 can issue an emergency prescription too.

Be good to contact your RA department to liaise with your GP about increasing the amount of MTX your prescribed each time.

All the best.

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