MTX injections pushback

[Cath81]

Hi everyone. I'm a long time reader but first time to post. I just wondered if any of you had met resistance from the GP/Rheumy dept when asking to try the MTX injections rather than pills. I've been on them for 8 months and am hating the nausea but am getting push back and told to try various 'strategies' for managing it, all of which I already do. I'm guessing it is because they are more expensive so the business case to prescribe needs to be strong, but was interested to hear from others who have asked to make the switch.

[Hidden]

I was told injections were more expensive. I was on the methotrexate orally for 3 years. This has been a bad year and I was told to have the injections while waiting tests for Sjögren’s syndrome . It usually comes down to money. If they are making you ill make some noise. Contact your Rheumy nurse ( emails are good for future reference) if no joy email your Rheumatologist secretary until someone listens. I’ve learnt this over time you have to push. Good luck,

[helixhelix]

Yes, it’s cost. Not just that the injections are more expensive (like £20 not £2 a week) but also the hoo-haa of delivering them to you as generally can’t just get them at chemist.

But as others have said, make a noise!

[Poshcards in reply to helixhelix]

Hi, I have no problem getting them from chemist x

[helixhelix in reply to Poshcards]

I winder if that's common? I was told they have to come from hospital. Anyone else get them from chemist?

[Mmrr in reply to helixhelix]

I was told by my rheumatologist the injections were hospital only prescriptions, any issues to contact them.

[Blackwitch in reply to helixhelix]

I get mine from the chemist...but they never seem to have 4 in one go. I think all the chemists in the area ‘borrow’ from each other. At last I have a sharps bin big enough to take them. 🙄 I might ask about Nordimet next time I see the Rheumatologist. It seems it’s smaller, cheaper & easier to use. My thumb has no strength at all. Nic xx

[Poshcards in reply to helixhelix]

my prescription gets sent to me from my consultant, I then order them locally and pick up from chemist x

[nomoreheels]

Hiya Cath81, welcome now you've come from behind the shadows! I've been on MTX injections 9 years, after the first year on tablets. Injections were offered to me, I didn't ask to be changed to them & as my GP signed a Shared Care agreement they're supplied by my allocated Chemists on repeat script every 28 days.

So, it's both your Rheumy & GP who are resistant to you trying injections? It does seem unusual, though ultimately it would have to be your Rheumy who gives the go ahead, your GP would be unable to it being a specialist med. He's able to repeat prescribe but the initial script would have to be initiated by your Rheumy or prescribing nurse.

Injections are considerably more expensive at around £15 per disposable pen (£60 every 28 days, or more... the cost rises depending on dose) compared with around £2 for a 24 or 28 day supply of tablets. Either way the welfare of the patient is paramount not the CCG's prescribing budget restrictions, if this is indeed the reason for not prescribing pens to you.

Seems unfair to me not giving you the option as they're aware of side effects being disruptive. You're taking enough folic acid are you? If not an increase may help, it's what they're intended for. Without understanding their reasoning it does seem somewhat shortsighted because it's possible that you could come down slightly in dose as the delivery is more direct. This is turn could possibly help you with the nausea, but you'll not know without being given the chance. It's recently been agreed I can reduce my dose from 20mg to 17.5mg & an alternative antiemetic has been offered. I suppose one of the strategies they've suggested is an antiemetic? If not then do ask for one to be prescribed in the meantime, or if you are & it's not working well enough request an alternative. Keep on pushing though, feeling rotten through a med that's actually working is misery-making despite it controlling you.

[Blackwitch]

Hi Cath81

I took Methotrexate in tablet form for a few years then stopped them due to side effects. Recently, I’ve gone back to Methotrexate in injectable Metoject Pens. Yes, they are expensive but in my case the lack of side affects have been less. However, I know there’s a cheaper version called Nordimet which is easier to use if you have difficulty with using the Metaject pen (as I do). When I next see my Rheumatologist, I’m going to ask about it. Nic xx

[charisma]

Welcome, Cath! Nothing to add except that mine were prescribed and available at the pharmacy just like any other NHS GP prescriptions. I did not have to fight either, was put on them after just three or four months of starting MTX. 🙂

[Kerensa21]

Same as charisma, picked up metoject from chemist on prescription; only thing i’ve ever had delivered is biologics, I’m in UK. Rheumatology changed me to MTX injections due to side effects, nausea etc. Tbh it didn’t make a lot of difference tho I think they can lower dose a bit with injections as more getting into your system.

It’s bad enough having this wretched disease without constant nausea affecting your quality of life. Good luck.

[Simba1992 in reply to Kerensa21]

I have been wondering for years which is really better taking Mtx and hoping it will help in some way and living with all the side effects and or just looking for other alternatives. Some of us are offered biologics and some of of us get help (not all of us). The mtx side effects are of the kind that it’s difficult for me to stand and this is why it’s a med I have kept away from. Here sadly enough RA has not given me an easy time. But we make our choices. My mind has stayed clear, I have been able to keep away from stomach problems all meds to keep away from all the symptoms to treat all the side effects caused by this med. I have not been forced to take tests and and see doctors and take shots and so on. Yes I have payed a price. At one point I begged to try a biologics but this was impossible without trying mtx first . This is obligatory in France. You get no help if not following this protocol first. So I came to the point where I needed a new knee and there was no orthopedic surgeon to operate without the obligatory mtx first. But this time I have luck on my side and found an expert who gave me a new knee without following the protocol first and it’s working wonderfully. I don’t know what the future will hold but I’m at present feeling quite happy walking up and down stairs, pain free and going shopping.

[Kerensa21 in reply to Simba1992]

Goodness Simba, there’s no easy answer to it is there? I think in uk you have to fail on 2 dmards including MTX? I was on this for over a year, made my life a misery ( I know some are fine) then hydroxy added for a while. biologics (least side effects for me) are currently ok ....

ish?

All these drugs scare me & I don’t want infusions suggested as next option but uncontrolled RDs not great either; I had other issues with lungs when first dx.

It’s a personal choice as you say & I don’t know if i’ve got it right either tbh. I really hope your new knee carries on working; I didn’t know that about France & glad you found surgeon x

[Simba1992 in reply to Kerensa21]

My knee is working fine so is my body as a whole. I take no other meds than an alcaseltser with 340 mg aspirin in the morning, glas of bicarbonate daily 7mg prednisone daily. RA is a systemic disease and most of us have a multiple amount of disease caused by inflammation and , what I believe, the side. effects of these meds.RA is very different in different people. I do not believe there is no absolute right or wrong and there should always be allowed a respectful dialog between doctor and patient concerning treatment options.

[Mmrr]

Stay strong and say no, you have enough to deal with without nausea too and would prefer to try MTX injections.

Be blunt, but polite...are you saying I must live with and manage nausea when the possibly of removing it exists? Can you write the reason I cannot have MTX injections down for me please ?

I have found this type of questioning works.

[Cath81]

Thank you all, really useful and lovely to have the moral support.

[Dobcross1 in reply to Cath81]

Sorry for late reply Cath, I was started on tablets but couldn't keep anything down and lost a lot of weight - my GP wanted me to try anti emetic but I rang the Rheumatology nurse and she changed me to metoject which I've tolerated much better. As others have said, you might need to make some noise. Good luck and hope you get changed soon

[Shalf]

Hi Cath,

Sorry your going through this. I am curious and

interested in the various strategies they are requesting you try?

I was also on oral methotrexate and also had terrible nausea. I am now on injections. Early days with no effects to report as yet.

Stand your ground. It's ridiculous we have to 'fight'when we clearly have grounds for change/adjustment with meds. Everyone is clearly behind you. Take that strength and stick to your guns.

Good luck xx

[JFlay]

Hi, I was on MTX tablets for just under 6 months. My folic acid was increased to 5 days and that stopped the nausea but I was still having gut pains and dull headaches. I was told to try splitting the MTX over 2 days but it didn't work. I thought I would be offered the injections but no! I was just told to stop taking the MTX! I had to wait 8 weeks for my next rheumy appointment by which time all my aches, pains and stiffness were coming back. I was then started on hydroxychloroquine which I suspect is an even cheaper drug! but happily it's working for me 😏

[Hobbits]

I would ask them why the will not prescribe. See what they say. Sounds like they are putting $$ before your welfare. It’s frustrating because they don’t live in your body or know your pain, yet get to make all the decisions. How you administer should be your choice, esp if the pills are causing issue, you already have enough issues to deal with.

[JEM95]

I also have Metoject, which I get via the pharmacy - although they do have to order them in.

The injections cost more, for sure, but much much less than the biologics would. We need all the help we can get fighting this wretched disease x

[lilyak]

Stick to your guns. Yes, injections are more expensive, but they are NOTHING compared to the cost of biologicals. If you can be on mtx, without a biological, which many people can be (without the side effects from the tablet form) it is FAR cheaper to be on methotrexate. A generic, cheap medication. Also, if you're able to get the vials, and draw it up yourself, without the fancy 'easy' syringe, its even cheaper. I used to draw it up myself, no problem. Sometimes I had a friend draw it up and inject because my hands wouldn't allow me to. But there is no reason they should deny you, based on cost. Mtx, in ANY form is always cheaper than a biologic, and studies show mtx is more effective. So please, stick to your guns. Give mtx a chance, and 'encourage' your doctors to give you every opportunity to benefit from this medication.

Best of luck

[john140]

I was taking the MTX injections for a couple of years, they push back because the pre-filled syringes are very expensive along with the spill kit/sharps bin and other stuff they have to provide. Pure and simply cost...I have to say though the injections make no significant difference to the horrible side effects of MTX...

[Bhasvic64]

Hi there I have used mxt by injection for last 7 years as pills upset me badly as did 2 other drugs which names escape me now. I had no problem convincing rheumy to change just had to pay for the first 3 months then nhs as I have age exemption. Haha!

[KittyJ]

I didn’t have to ask for the injections they were offered as I was really unwell for 5 days after taking the tablets at higher doses. Unfortunately the injections were no better and eventually I went back onto a lower dose of tablets which I tolerate mostly now.