Nausea: I’ve been on mtx for 14 months now, and been... - NRAS

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Nausea

Charlie_G
Charlie_G

I’ve been on mtx for 14 months now, and been taking 25mg subcut since last July. Having had a (mostly) relatively easy time of it at 15, 20, and 25mg orally, injecting initially made me feel absolutely dire for 5 out of 6 days. Then I’d have one day of feeling mostly human, only for dose day to roll round again. This gradually settled over time, but for the last month, I’ve been suffering horrendous nausea for about 48 hours post dose that no amount of water or injecting in the evening seems to solve. I’m not being sick, but it’s the intensity of nausea where I very easily could be without having to try. Eating doesn’t help (and the thought of food turns my stomach even more much of the time) and I’m at a loss as to why it’s suddenly started happening now when I’ve been on it for so long. I had a lef increase before Christmas, with 2 lots of monitoring bloods over Jan and the start of Feb, and aside from white cells being at the low end of normal, everything else was fine, including my LFTs. I’m taking 5mg folic acid 6 days a week and have been for almost a year. I wouldn’t mind quite so much if I thought it was doing the job, but aside from making my hair disappear it’s done nothing, I’ve only ever had any improvement in my symptoms with the introduction and subsequent dose increase of the leflunomide. At this point, I’m still not under control, and to some extent I’ve given up for the time being - I’ve got a lot of stuff on my plate rn with my daughter, so just don’t really have the energy to fight, and rheum are telling me that I’m not even eligible for consideration for biologics in any event. I have a call scheduled for Wednesday morning with a nurse specialist (changed from a consultant), although I’m hardly happy with them either after a complete cock up over pred and an ultrasound back in November, but will obviously bring it up during the call.

In the meantime, anyone got any thoughts or words of wisdom on this nausea business? Also any suggestions for foods that might be tolerable? I’m doing the whole bland, no spice, no seasoning, no flavour, but even dry bread tends to make me feel like vomiting. I have a lot of chronic health issues that give me symptoms on a daily basis, so I’m used to just gritting my teeth and getting on with my body being completely rubbish for the lols, but this is to the point where I’m dreading taking it and really struggling to make myself do each dose. I can’t have ginger as it triggers my arrhythmia, and peppermint is also a no go.

37 Replies

Sounds a miserable life for you just now Charlie. Definitely time to talk with your team so hopefully you'll be able to explain just how miserable on Wednesday. Meantime, have you thought about asking for an anti emetic. I’ve had two different ones, metoclopramide & prochlorperazine, the latter works better for me on higher doses of MTX but of course we each respond differently. I chose to take a reduction in dose.

Had significantly worse over the years, but in all honesty, yeah, I’ve also had it an awful lot better. I’ll ask about antiemetics and see why they say, but they weren’t even slightly sympathetic last summer and this is only 2 days rather than 5. Whilst I’m fully aware not to mess with meds without consultation, there is a bit of me wondering about stopping the mtx and just seeing what happens. They won’t accept it’s not doing anything for me, and if they were right about that, given I have active disease right now, I’d expect it to be pretty apparent and probably quite quickly. At least we’d know one way or the other.

Brychni
Brychni in reply to Charlie_G

I've stopped mtx but for different reasons. I told rheumatology on answer service but no one got back me. Also let my GP know and he was fully supportive. If I'm told to go back on it on Tues I think I'll need more proof that it's necessary as it and hydroxychloroquine haven't done anything notable in preventing progression of pain.

Definitely not good to be at the point of dreading taking it. Afraid I don’t have any words of wisdom to add over and above what nomoreheels already said. Fingers crossed you can get it sorted. But if you feel your symptoms aren’t being controlled anyway, perhaps it’s time for a bigger conversation with your team. Good luck xx

Charlie_G
Charlie_G in reply to LoneEra

Thanks. Already had that conversation in December, but I don’t meet the criteria for biologics - even though they acknowledge I’ve failed 2 standard DMARDs, I have to have 3 or more swollen joints at any one time or wait until I have deformity requiring surgery. On the bright side, given the extent my hand has drifted out at the wrist in the last 12 months, that might not be that long a wait. Being completely seroneg (likely PsA) doesn’t help my case, nor that my DAS score is low due to that and the lack of visible swelling, but DAS is specifically designed for RA, whereas if you look at the PsA specific scoring systems that are used in clinical trials, I easily come out as moderate disease activity in all of them 🤷‍♂️ Last appt. they said the only thing they’re willing to even consider doing is adding in sulfa as a third line, but I’m not going to get any real answers or plan on Wednesday now that it’s been changed to the NS in any event. More than a bit fed up with it all, really - 20 years of symptoms, and a decade of desperately trying to get diagnosed, getting fobbed off at every turn, but I’m still not actually that much better off for being diagnosed so far.

Anyway. We all just have to keep plodding on the best we can.

Boxerlady
Boxerlady in reply to Charlie_G

Just to mention that when I had a f2f with a nurse, she was under instruction from the consultant to assess my joints and to decide whether I should be put forward for biologics or have Sulfasalazine added to my Methotrexate and Hydroxychloroquine. As my DAS score was under a certain level, she prescribed Sulfasalazine and for me, it's been the missing piece of the puzzle and things have really improved.

I'm also on 25mg Metoject (and Hydroxychloroquine) and feel as if the side effects are increasing; I suspect that it's building up in my system. It's manageable atm - foggy head and an strange taste in my mouth - but I am hoping that I might be able to reduce the dose a bit if my joints continue to behave.

I did have some increased nausia for a few weeks but thankfully, that seems to have settled 🤞I'm lucky in that I can use ginger and peppermint but I have seen other mentions of anti-nausia medications so maybe that's an option for you.

Charlie_G
Charlie_G in reply to Boxerlady

It’s a phone call, not a face to face, unfortunately. Last time I was seen was at diagnosis last Jan. That consultant seemed brilliant, said that in his experience, he wouldn’t be at all surprised if I needed biologics, and actually took my back and hip pain seriously which resulted in finally proving it isn’t just ‘one of those things’. Haven’t spoken to him since, though, and the last guy was not only uninterested, but rude with it. I got reprimanded for following the NS’s advice and only stopping pred 3 days before an ultrasound rather than 5.

I’m not averse to trying the sulfa - I’ll try pretty much anything at this point - it’s more the frustration with them saying I’m practically in remission by RA standards, when I haven’t got RA, and in PsA terms have multiple, very clear indicators of ongoing disease activity. I love the NHS, it’s saved mine and my daughter’s lives more than several times, but adult patients can and are routinely left in pain and with functional difficulties purely on the basis of cost across multiple specialties.

Brychni
Brychni in reply to Charlie_G

Can you try to request an appointment with that same consultant?

bubblyalex
bubblyalex in reply to Brychni

Yes I agree.

LoneEra
LoneEra in reply to Charlie_G

I hear you. I’ve been at this 15 years now - with no progress. Could be worth trying the Sulfasalazine. It does work for some people.

I’d be sorely tempted to be dropping that MTX - see what they say. The biologics thing is really annoying. But as others have said, scans may reveal that there are issues that need addressing - even if they can’t be seen.

I was consistently told there was nothing wrong with my left elbow. I ended up paying for a scan myself. Results...large effusion and full thickness erosion of cartilage. Doctors: “oh sorry, it didn’t look bad!”

Really hope things start to turn a corner for you soon xx

If it’s that bad with your them ... how about a second opinion from different rheumy at different hospital?

Charlie_G
Charlie_G in reply to bubblyalex

Mmm. I have looked into it a little, but it’s effort when at any given moment right now I’m one straw away from a genuine breakdown, and there’s substantial waits to be seen at the other hospitals. May turn out to be the only option, though.

bubblyalex
bubblyalex in reply to Charlie_G

I can understand that. Hugs to Charlie. Battling the machine when it isn’t helping and won’t help is well what can I say ... is your gp any good? Mine was and is incredible... it was him that said to me we need fresh eyes. Off to Southampton (I chose who I wanted to be referred to with his help) I went which is just over an hour away and although still got such a long way to go I do trust the team and my rheumy. I hope you get somewhere with this and most importantly they listen and change their stance. 🤞🏻🍀

Charlie_G
Charlie_G in reply to bubblyalex

As it happens, I’m also about an hour from Southampton, but had been put off considering them for a second opinion by my dealings with the paeds rheumatology service there. Amongst numerous other things, my 13 yo has quite severe cystic fibrosis, and has developed CF related arthritis over the last 12 months, which is autoimmune driven, but flares tend to be self-limiting and short lived, at least in the initial phases of it. She was referred to Southampton rheum by our local paeds to confirm the diagnosis because of my history and the fact that she already has some other autoimmune stuff going on, but I wasn’t impressed with them clinically, and if she does need to go on to DMARDs in time to manage it, I’ve already asked to be referred to whichever London hospital her London-based CF centre have rheum links with. That said, I think the only crossover between paeds and adults is with Dr. Davidson, and we didn’t actually meet him, so it might be worth reconsidering for me.

My GP is a lovely lady, and good with general stuff, but not always the best with this kind of thing. We’re also still relatively new, so they’re still getting to know me and the fact that I often medically do things in a weird way. If I’ve heard ‘it can’t possibly be that’ once, I’ve heard it a hundred times across multiple specialties at this point. Oh, wait, it’s *exactly* that. Well, how bizarre 👀🤦‍♂️

bubblyalex
bubblyalex in reply to Charlie_G

The main thing is I think to go somewhere where there are fully fledge Biologic teams. It also means they can do the necessary blood test/tests. The university/teaching hospitals are really good where things are complicated IMO. Professor Edwards (inflammatory arthritis) was the team I went for and still with the same rheumy from his team. She is working with the Biologics team too (Dr Holroyd) since she suggested the move into Biologics. The rheumy helpline is slow and the nurses lovely but they don’t make any decisions or changes for me. They have an app and messaging service so you can send pictures and info for phone appointments etc. In contrast I was at Salisbury which is a lovely hospital though rheumatology is not full time there and really the Dr I saw (Dr Copsey I think) nice enough person but didn’t give two hoots about me ... deserted me in hospital for the two weeks I was in and when I came out no contact for over two months (crp was between 210 and 167) ... truly terrible. By then I had already been seen at Southampton and begun treatment. 🤷🏻‍♀️ Southampton appointments have worked like clockwork throughout the pandemic ... all you need is an urgent referral and your gp to chase if needs be ... no need to come off your current rheumy’s books until you see if you’re happy with who you meet? This is what my gp did. Check them out on the internet to find the in charge rheumy that best suits your diagnosis best. Obviously my experience may not be yours what works for me might not for you but at least there are a number of options there and they are a hub for research and forward thinking. They have been heavily involved in the pandemic research and treatment etc. I feel in a good place where there are options.

As someone else said here might be worth you being firm and asking to speak to the rheumy you spoke with a year ago?

Your gp will get it. The main thing is for her listen and do the tests needed. So many I hear refuse to do the tests.🤞🏻

Charlie_G
Charlie_G in reply to bubblyalex

Thanks, Alex. That’s a brilliant reply, and I really appreciate it 👍

LoneEra
LoneEra in reply to bubblyalex

Agree on the university hospitals. I was briefly at UCLH in London and they were brilliant. Then moved to Kent and it all went to (insert swear word here)!

I wonder whether there might be a link to increased Lef? That somehow it has sensitised you more to the MTX?

I think it’s completely rubbish to say you have to wait until you have deformity needing surgery!! And its not just swollen joints, tender ones count too. They should be doing an ultrasound to look for early signs of erosions to prove the case. That’ what happened with me as I always have low inflammation markers, so even with loads of swollen and tender joints I never made the grade, so pushed me onto biologics.

Are your inflammation markers low? How far off a DAS of 5.1 are you?

But it is your body, and your choice. So I think I would say that I can’t tolerate these effects and need to drop doses of MTX. And ask them point blank to reevaluate you for biologics.

Charlie_G
Charlie_G in reply to helixhelix

That’s a good point about the lef, Helix, hadn’t considered that.

They’ll only do ultrasounds if there’s active swelling. I still had active swelling in the little finger that got me diagnosed back in October, so they organised an ultrasound but gave me pred in the interim. Pred settled it right down, was told by the NS to stop the pred 3 days before the scan, which I did, only for there to be nothing to see but my finger started to swell back up again 48 hours later. Not very nice consultant I spoke to in December then reprimanded me for not stopping the pred for at least 5 days 🤷‍♂️ I have loads of tender joints, and I’ve told them this, I’m also getting transient swelling and pain lasting a few days in new joints that have never been a problem before. I’ve developed ulnar drift, and some of my fingers are rotating and bending, but they’re not interested. Even at the height of a flare, my crp and esr are both routinely normal. The highest my crp has ever been in relation to joint issues is 12, which was one of the reasons they kept telling me it couldn’t possibly be arthritis for years.

According to my last clinic letter, I have a DAS score of 2.1, so apparently in remission, but ‘patient self reports a score above 3’. When I use the calculator on the DAWN website, I get a DAS score of 4.1 for exactly the same symptoms I gave him even with normal inflammation markers. Not the biologics threshold, but a damn sight more reflective of how I feel. Look at any of the scores that exist for use during PsA clinical trials, and I’m also easily moderate disease activity on all of them. My toenail psoriasis is also currently flaring for the first time in years. It’s almost like the patient they’re talking about and me are two different people.

Charlie I suppose you could simply try missing MXT for a week and seeing if the nausea stops? It sounds really grim, and if it’s having that bad an effect on your your quality of life it sounds quite

reasonable to question it.

(I use an anti emetic when taking Oramorph and it’s very effective so maybe that route’s worth investigating?)

Otherwise maybe time to be more forceful about how bad you feel and how active your disease is. Sometimes I think medics just rely on us going away and not bothering them. It’s particularly difficult when you simply don’t fit their assessment criteria. I know it takes a huge amount of energy, which sometimes we just don’t have, but don’t give up!

Ask your rheumy nurse if the Leflunomide might be the culprit! I found that caused me terrible nausea..I lost a huge amount of weight because I just couldn’t eat...once it was stopped.....The nausea discappeared.

Charlie_G
Charlie_G in reply to AgedCrone

Thanks for the reply. Thing is, I’m vaguely nauseous a lot of the time and have been since well before the arthritis meds, but I’m certain this is the mtx - always comes on within 8 hours of injecting, goes away a couple of days later. The only side effect I seem to get from the lef is skin infections and painful outbreaks: not exactly great, but more tolerable than this.

Brychni
Brychni in reply to Charlie_G

I go through phases of feeling sick at night which started before diagnosis. During those phases I'd also get salty taste in my throat, an annoying little cough and difficulty swallowing properly. Gp said it was GERD and I had inhibitors (or something) which did work. Since diagnosis I've discovered GERD is very common in Inflammatory arthritis.

Charlie_G
Charlie_G in reply to Brychni

I was diagnosed with GERD about 10 years ago but was told it was my size. Dropped 10 stone, but still have the reflux. I take a PPI once a day which mostly keeps it in check. The general nausea has only been for the last couple of years, but I’ve had bladder and bowel issues for the same period that they’re not really sure about. I’m a bit of a puzzle medically, so’s my daughter, the difference being that in paeds, they understand and accept that there is no standard model, some kids just do things very differently. My own experience is that an adult presenting differently, or with anything they can’t explain, particularly if there are no supporting clinical tests, tends to be considered to be making it up or exaggerating in the first instance. Sometimes even with supporting clinical tests. I had loads of symptoms that they told me were all in my head, culminating in near enough losing the ability to walk over the course of 18 months. They’d done an MRI before it got to that point that showed the problem, but listed it as an incidental finding: it was indeed ‘all in my head’, just not the way they meant, and I needed 2 intracranial ops to sort it 🤷‍♂️

AgedCrone
AgedCrone in reply to Charlie_G

But you say you are wondering if taking Leflunomide is making it worse...for some people it does not gell with other drugs .....it didn’t for me.......so don’t suffer in silence....get a drug review......write down all the relevant info since you’ve been taking the Lfl....& see where that gets you.It can take a frustratingly long time to get to an acceptable drug regime..but don’t just put up & shut up......ask away until you feel your drugs are working.

In the absence of ginger and peppermint the only other thing that has helped me with severe nausea and vomiting due to migraines was Bucastem pills which, you place between inside of lip and gums. Basically no swallowing. I've also had inconsistent care from rheumatology but found out that I could just book an appointment with consultant myself rather than requesting one through the nurses (which didn't happen). So I'm off on Tue morning. X

Hi Charlie, they really need to sort this for you it is awful for you feeling so unwell. I was on tablets for a few years and started to feel nausea so was put on injections and felt much better but fortunately on a much lower dose now. I do have anti sickness in case of need which is cyclizine and work very well. On injection day I have cyclizine, ginger etc just so I can wake up next day feeling okay!! I hope you get some joy very very soon, I totally understand how you feel. good luck x

Hi Charlie, firstly I’m sorry you are going through all of this, it’s a lot to deal with and I wish I could give you a hug. I’ve been on methotrexate tablets for 2 and a half years and find level of nausea on them has varied up and down at various points during that time. I’ve also found that one particular brand of the tablets seemed to cause much worse nausea than others, but I don’t know if this difference could occur in different brands of the injections? I also think there is definitely a ‘build up’ effect sometimes. Also, when my disease is active I feel generally nauseous and lose my appetite anyway, so the methotrexate sickness just adds to that, and it sounds like that could be the case with you right now. Things I have found which have helped me are regularly grazing on small amounts of food during the worst days, and as weird as it sounds wearing acupressure anti-sickness bands on my wrists (I had them in from pregnancy so decided to give them a go one day!). Reading your post, I definitely get and understand your weariness with fighting for improvements and the inflexibility of the system sometimes. Obviously I don’t know your personal circumstances, but if you can afford it I wonder whether would be worth paying for a one-off private consultation with a different Rheumatologist. Sometimes a second opinion can give a different way of looking at things and at least you wouldn’t have to battle to get a different referral from the NHS this way? I had a private consultation early on and it cost me around £200, obviously not cheap but if you can manage it, it seems to me you deserve some better support. Big hugs whatever you decide to do, keep us posted. 🤗

Charlie_G
Charlie_G in reply to Monkeysmum

Thanks, Monkeysmum. I absolutely could do with a hug atm, but not able to get one of those, either 🤷‍♂️ I’m currently trying to save to get a private cardiology consult and tests, as I’m having issues on the NHS there, too, but I’m a single dad and at home as a carer full time for my 13yo with complex needs, so saving any kind of significant money takes time. I need around a grand for the cardiac, so private rheum will be quite a way off.

Funnily enough, I did wonder about acupressure bands - desperate times require desperate measures and all that! - as I’d used them with some success for travel sickness back in the day.

Monkeysmum
Monkeysmum in reply to Charlie_G

Totally appreciate the cardio consult needs to take priority, just sorry that you have to go private to get the treatment you need 😔. The acupressure bands might be worth a go, they don’t completely take it away but every bit helps eh, and at least it avoids taking another tablet, I feel like I rattle enough with those already!

If they help with the general nausia most of the time that will be a start; then, if it's still bad just after the Metoject that will point to it being the culprit.So sorry to hear that you're not getting the help and support you need - you're a hero for coping with so much and you deserve better. 🎖️

Hello, I inject 25 mg of mtx once a week and the day following I take 30 MG of leucovorin to combat the side effects. The large dose all in one day seems to stem off any lasting side effects. Though sometimes I feel nausea later in the week and take Bonine-Not sure it's available in the UK, it is in the US. It is an antinausea med that doesn't make you sleepy. Its over the counter and seems to help on those extra difficult days. Good luck and hope you get a little relief.

Hi, I am so so sorry reading through your suffering here. Personally, mtx took about 6 months to kick in. Generally other said it would take about 4 to 8 weeks to start working on us if it is the right medicine. In your case, in my opinion, it just take too long for it to work on you. I wonder if that is the right medicine for you? I think, worth to ask your rheumy on this.

I started with oral mtx, I did have a lot of side effects from it. Most of the side effects, in my case were gone after about a year of mtx. Unfortunately, nausea, vomiting and cold stomach were getting worse when the dosage of mtx got higher. In my case, these problem only lasted for about 1 to 2 days. When my liver was bad, my rheumy started to consider to reduce the dosage of mtx, I was on 20 mg of mtx then, my liver markers were back to normal when the dosage of mtx was reduced to 15 mg.

Leflunomide was added to me after 13 months of mtx, my rheumy told me that she wanted to speed up my recovery process. In fact, my RA was already under very good control at that time though not in remission yet. I did not have any side effect from leflunomide though.

When the dosage of mtx was reduced to 7.5 mg, the side effects of nausea, vomiting and cold stomach were gone too. I do not have anymore side effect from mtx since. I have been in remission since Nov 2015.

After 5 months of mtx, my ESR and CRP were back to normal but I was still in horrible pain and I had muscles wastage at that time and I was like a walking skeleton. I was left with 38 kg from 54 kg then. I think to say that you already do not have RA because your ESR and CRP are normal is definitely a wrong comment. Seriously suggest to change to another rheumy for the sake of your health.

One more thing I just checked my medical record, I took omega-3 for a year, that caused the nausea and my stomach bloated issue. After my rheumy told me to stop it, I felt so much better and the nausea and stomach bloated issue had been stopped. I only had nausea, vomiting and cold stomach on the day of mtx instead of everyday. My rheumy took me that too much oil floating in my body was bad for me too. She said I should only take it for 3 months, if it did not help, then no need to continue. If it helped then I still had to stop for a while and continued later. Just read the instruction and followed strictly.

Charlie_G
Charlie_G in reply to Amy_Lee

Hi, thanks for your reply. I most likely have psoriatic arthritis (PsA), which is different to RA, but shares some of the symptoms, and the treatments are the same. Normal crp and esr even during flares is very common with PsA, so it’s not that rheum are saying I don’t have arthritis, my problem is that they’re judging my condition based on tests and scores for RA, when we all agree I don’t have RA. The Leflunomide is the only thing that has given me any symptom relief and improvement at all in almost 15 months, but the medics don’t seem to accept that the mtx isn’t helping, or that I have definitive symptoms of disease activity for PsA, purely because I don’t have lots of swollen joints. Will wait and see what they say on Wednesday, but not expecting a lot.

Amy_Lee
Amy_Lee in reply to Charlie_G

Since I an a RA patient though I take the 2 DMARDs but I do not think I am in any position to share my experience then. Hope you will get some relief soon!

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I have skimmed through the replies so apologies if I’m repeating stuff.

1. I take Cyclizine 50mg (one tablet) an hour before I take my Mx 25mg. This helps stop me feeling nauseous.

2. Injections made me really poorly so I went back to oral... I think it was also me freaking out, but pretty grim all round.... not good :-(

3. I have been on Sulfasalazine, 2 tablets twice a day, for ten years (as well as steadily increasing Mx).

4. Biologics are a cost thing... they are expensive so only given when everything else doesn’t work (anymore).

5. DAS scores are only a snapshot of ‘that day’ and the preceding week, so are not very accurate for RA patients really... but definitely NOT accurate for someone with a different condition! deary me..... you need to raise this..

Good Luck!

Hi sorry to hear you are feeling so poorly, I hope they can help with the nausea when you speak to them, it must be awful, keep me posted how you get on take care char

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