Weekly methotrexate injections

[Manzana1]

Hi everyone, I changed from methotrexate pills to injections a couple of months ago and am doing so much better now. However, I initially understood that each dose must be 7 days apart but I had my last injection last Wednesday (normally I have it every Tuesday) and the nurse has booked my next one for this Tuesday which would only be 6 days. She says it's fine. I'm not sure...?

[Frances_UK]

I was told if you are a day or two late taking it, you should still take it on your normal day next time. So it sounds like taking it a day or two early is safe.

[KittyJ]

I’ve been told the opposite to Frances. Do not take it twice within 7 days, if you’re a day late you take it the same day a week later. I suppose you have to take what your nurse has said as right though especially as you asked specifically 🤷🏻‍♀️

[Frances_UK in reply to KittyJ]

It might be dose dependent. I only take 12.5mg. But I don't do it. If I am late I set that as my new MTX day. I have no side effects so it doesn't matter to me if it's a Friday or whatever.

[smilelines]

I am not sure. When I started on methotrexate injections they gave me a little instruction sheet on how to inject myself so I never had to book appointments. I wonder why they make you come in for injections rather than just doing them yourself.

[vonniesims]

I might check with the pharmacist. I agree with Smilelines, perhaps you can do them yourself. It's very easy

[stbernhard]

Can't give you advice, but I have had 6 day breaks or 8 day breaks and it's never made a marked difference.

[Paula-C]

My consultant told me there's a two day window when taking it. Here's what it says in my mtx monitoring booklet. You'll have to click on it, info at the top.

Info re mtx

[Manzana1 in reply to Paula-C]

Thank you so much xx

[KittyJ in reply to Paula-C]

That’s for if you’re late on taking it not taking it early Paula. At the top it says in bold, once a week.

[Frances_UK in reply to KittyJ]

The point people are making is that if you take it a couple of days late it says to take the next one on your usual day; i.e. less than a week later.

[KittyJ in reply to Frances_UK]

Well I’m surprised if they’ve been told to take their mtx and then it’s ok to take it 5 days later by their doctors. Mine have never said that. But then we all get told different things. I know someone who died from taking their mtx incorrectly. The only person I’ve seen say they’ve been told that is Manzana and they’re not in the UK. We are told ( you will find lots of posts asking this question, it regularly gets asked ) if you miss your dose and take it the next day or two then your mtx day changes to that day the next week. To get back to your usual mtx day you take it a day later each week til you’re back to your normal day. Anyway it doesn’t matter as in Spain they obviously do it differently 🤷🏻‍♀️

[Paula-C in reply to KittyJ]

My consultant told me there is a two day window either side of taking it and my friends consultant who is a professor of rheumatology said the same. We take a very low dose compared to some people who take a much higher dose for cancer, they probably take the equivalent of two weeks or even more of our weekly dose at a time. I'm not advising anyone here how to take their drugs I'm just repeating what I've been told, my friends been told and showing what it states in my booklet.

[Manzana1 in reply to Paula-C]

Thank you again for sharing with me. I have decided to do what my nurse says as I believe this to be the best course of action. Just wanted to hear some opinions as things are different here in Spain. Thank you again xx

[KittyJ in reply to Paula-C]

We’re all advised differently all the time, who knows what’s right or wrong, not me. 😊

[KaysDad]

I self-inject MTX only as an adjunct to bi-annual Rituximab infusions and only 10mg. MTX did nothing for me in the 2 years I took it before RTX so I have no qualms about being a day or so out of the regular 6 day regime. Also I am advise to omit it altogetjher if fightin off an onfection (colds etc) and I did for my covid vaccinations - but this might be quite different for those on higher doses or relying entirely on MTX.

[Cheylann in reply to KaysDad]

Wondering why you would take an immune suppressing drug for 2 years if it did nothing for you and put yourself at risk of infections? Seems a bit strange.

[KaysDad in reply to Cheylann]

Good question, Cheylann. If you have been through the normal RA treatment process, you start with a low dose of MTX gradually working upm the the maximum normal dose, then they will add anbother drug (e.g. Sulfasalazine) while continuing with MTX and then, when that does not work either, they add another drug (e.g. Hydroxychloroquine) while still taking the other 2. This can easily continue for 2 years. You might then ask why I am still taking it. I have asked several times and the most likely answer is that it is supposed to stop my body producing antibodies ( ?? ) to the biologic so therefore it should not stop working for me

[Hidden in reply to Cheylann]

My understanding is biologics can work better when taken in conjunction with mtx or another DMARD, so even if a patient previously showed little or no response to the DMARD on its own, it may still be beneficial in combination. There are a number of reasons to do this, but it’s particularly relevant for people where the number of biologic options is limited, like for those with PsA rather than RA. Once you say a biologic isn’t working, you can’t go back and try it again, so you need to ensure it’s definitely not effective before calling it a fail - adding a DMARD is the main way of doing that, and for some people it makes all the difference. I’m going through this with imraldi for PsA at the moment.

[Cheylann in reply to Hidden]

I can't get a biologic until I've been on methotrexate for at least 3 months. Not sure why. I suspect it's an expense thing but that is the NHS rule. I too have Psa and am praying mtx works. Time will tell.

[Hidden in reply to Cheylann]

There is a step-wise, national prescribing process that has to be followed regardless of the type of inflammatory arthritis somebody has. There are a few exceptions, like specific medical reasons, but most people have to ‘fail’ at least two, often three DMARDs, either separately or taken in combination, and meet certain disease criteria before they’re eligible to be put forward for a biologic, so assuming a person does fail to respond to the first line treatments like mtx, it’s not something that generally happens that quickly. You can see the NICE guidelines for treating PsA with biologics here:

nice.org.uk/guidance/ta199/...

I was taking mtx alone and then in combination with leflunomide for 14 months, working my way up through the doses (which, in the absence of a medical reason not to, is part of the required process to determine a drug isn’t working) before initial conversations were had about biologics, and had my liver not thrown a wobbly, I was on course for another 4 to 6 months of taking lef with sulfasalazine as my third DMARD I needed to fail to meet the biologic prescribing criteria for my CCG. There are exceptions, but I think if you asked around here, many people would tell you it took a minimum of around a year of taking various DMARDS to meet the criteria for biologic therapy, regardless of type of arthritis. But they’d also tell you it’s a club no one really wanted to join; certainly in my own case, given that there are significantly fewer biologic options for PsA compared to RA, it’s a lifelong disease, and treatments sometimes lose effectiveness over time, I would have quite happily stayed on DMARDs if they’d worked. Save the biologics for years to come 🤷‍♂️

There is absolutely a cost implication behind the criteria, as even the cheapest biologics cost the NHS anything from £350 to £1200+ per dose, versus 8p per tablet (or roughly £14 per injection pen) for mtx, but that’s understandable. Particularly when many people can and do get excellent disease management with DMARDs, including people with PsA, and they’re also comparatively well tolerated. Biologics generally have more significant impact on the immune system, leading to increased risk of infections, as well as various other potential problems.

With any RD treatment it’s always a case of time will tell, but there’s nothing to say the mtx - either alone or in combination with another DMARD - won’t do the trick for you. Fingers crossed!

[Cheylann in reply to Hidden]

Thank you Charlie. The way you have explained this makes perfect sense.I've just had my first low 10mg dose of mtx and have a long way to go by the sounds of it. However, I've decided it's a start and one I've been so hesitant to start. I've now got to the stage where I've accepted I have this awful disease and made the decision to give it a go. I just hate the thought of using these harsh drugs with no guarantees.

I mean why would one put all these chemicals into your body potentially damaging other organs and they may not even work.

Anyway, as you say its trial and error but the time has come for me where I can't just sit here watching and feeling my joints deteriorate.

[MrsD7]

Like a few others I inject myself but was told that if I'm a day late I can still take it on my normal day. Try not to worry to much and just talk with your nurse more on Tuesday.

[Pulfs]

I also inject myself and if I’m a day late make that my new injection date . Wondering why you have to see a nurse for injection? X

[Boxerlady in reply to Pulfs]

I had to see the nurse for the first two injections to be shown how to do it.

[Manzana1]

Thank you all so much for sharing your experience with me. I struggled with a needle phobia for years so I am slowly getting over that. I hope to be able to inject myself in the near future. I live in Spain and the reason I couldn't have my injection last Tuesday was because at 8am in the morning after driving 8kms, the nurse informed me that someone had locked the room where the injections were kept and they couldn't locate the key (I kid you not), so I had to return in the afternoon to be duly informed that my dose (17.5mg) wasn't available. They offered me 2 injections, one 10mg and the other 7.5mg, but I declined. Back Wednesday morning to finally be injected with the correct dose. I love Spain

[Gnarli in reply to Manzana1]

I don't really 'like' your post. I just wanted to express sympathy.

[bpeal1 in reply to Manzana1]

If you are able to find an appropriate therapist I can definitely recommend cognitive behaviour therapy (CBT) for needle phobia. My teenage daughter had very bad needle phobia and her rheumatologist arranged CBT with an NHS Psychologist. The transformation has been unbelievable. Before the sessions she had missed routine vaccinations because she was in such a state the nurses couldn’t do it. She had to stop methotrexate injections because it was taking over 4 hours each time and she also didn’t have a steroid injection which she really needed. Since the sessions she’s had two joints injected with steroid without flinching, she’s had the routine vaccines she missed out on, she’s now on biologics and she was begging me to organise her Covid vaccines (before she was even eligible). If that’s not an advert for CBT I don’t know what is!!

[Manzana1 in reply to bpeal1]

Hi and thank you for sharing. Unfortunately, I've been down that route but it didn't work for me. I'm almost over my needle phobia now but not quite there with self-injecting. Soon

[Paula-C in reply to Manzana1]

My daughter lived in Spain for several years, right at the bottom, she worked in Gibraltar. We use to hire an apartment a few times a year for a month in Duquesa, she's back in England now which is lovely but we do miss going over there on a regular basis.

[Moomin8]

To be honest, I've always done them myself.

[Happy5]

I sometimes move mine up or down a day depending on what's happening in my life.

[nomoreheels]

Hiya Manzana. I think we're more 'to the book' here in the UK. My experience of meds & Spain is similar to yours, not quite so rigid. As it's your Nurse who's said it's fine & it's her administering the injection I’d ride with it, as you tend to with all things after a while there, it's pointless doing otherwise & does make for a calmer life!! 😊

[Paula-C in reply to nomoreheels]

My friend told me she bought tramadol in a pharmacy in Spain many years ago.

[nomoreheels in reply to Paula-C]

That doesn't surprise. Prior to 2015 it's more than likely she'd have been able to buy most meds otc. When we holidayed, before living there, we used to buy antibiotics to bring home. That's clamped down on now though, just as prescribing here has, though I have heard of someone being sold them, it's not legal though. Pharmacists in Spain aren't exactly the same as in the UK, the rules enable them to treat & sell meds for minor ailments, those you wouldn't ordinarily want to bother your GP with. It works well but if they think you need to see a GP or need certain script only meds they'll say to go to your health centre.

[Manzana1]

I completely agree 😊

[Cheylann]

Don't you inject yourself?I'm due to start soon. Do they help your pain. I have Psa.