Methotrexate - long term use.

As a few of you will know I've just reduced doses of injectable MTX to try and lessen or even eliminate the very unpleasant and intolerable side effects I've been experiencing. I say now, in a cautious whisper, that I injected about 13mg last night and woke this morning without the rank taste (rusty metal and sour milk) or the nausea. I was tired, sure, but I can tolerate that for a day or two each week.

It's too soon to whoop for joy I know but in the experience of others does this drug build up in our systems and cause worse side effects for periods of time or off and on because it accumulates in our bodies? I ask this because when I first went on the tablets I had no side effects at all beyond a bit of hair loss, which only lasted a few months and then thickened up again, and extreme tiredness which I have always suffered from the next day - much like a hangover. Beyond that I spent the first six months feeling very relieved that the side effects others complained about had eluded me. Then bam!

The absence of foul taste is truly life changing but I've been here before with dosage drops and then had a rude awakening after taking it the following week. It would be really good to hear from people who have been on MTX for a long time - four or more years say - and who have noticed changes in the way it is tolerated over time.

[Rockpool60]

Hi Tilda. Hope things get good for you I got a phone call from RA nurse to say my consultant wanted me back on MTX but lower dose..and my 'feeling good' may be short lived I am allowed to continue on Hydroxy alone until July when I see her..so stressful..as i feel good. Hugs and hope things improve for you ..Fiona xxx

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Thanks Fiona - hope things work out for you. If your bloods are good and you are still feeling good on the Hydroxy alone by July then maybe she will see sense and leave the MTX out of the equation you never know. Tilda x

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I'm not a 4 year-er but after 2 years & 7 months of tolerating Mtx very well I fear it's finally beginning to bite. Digestion up the spout after last 2 doses of Mtx - very unusual for me - & just today I had the thought that I finally 'got' spoon theory as I'm having to make decisions about whether or not to expend energy on every little thing, even filing my nails. Feeling gruesome - I won't talk it up because hopefully it WILL pass but this seems more like toxicity to me than RA. Yes, very much like a hangover but different somehow from RA fatigue. I'd rather it was RA because at least I wouldn't be doing it to myself.

I hope this isn't too depressing as I always think things will improve & usually they do. Luce x

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Oh that's rubbish for you Luce I'm sorry. Do you think it could be the Sulpha/ MTX mix perhaps since it's relatively new? I do believe, for me, the arrival of side effects, specifically nausea, was partly due to the raise in dose while still on tablets. That RA Warrior MTX blog I posted recently she describes the side effect symptoms changing and having periods of none and periods of feeling terrible on it. So I use that to keep me going with it but there's also a certain amount of guilt attached to moving down the doses now.

I can see my knuckles looking pink and swollen again - especially in the mornings - and I notice that it takes me longer to pull my jeans up and get pants and socks on first thing now too. My husband says it's because I've been using the spare bed to get away from his snores and probably a draft etc. He hates admitting anything is down to RA but he did look at my knuckles yesterday when we were driving home after a dog walk and he observed they are looking raised again. I suppose I've just thought this was one of those things that just happens with RA and not been too concerned - but this DAS thing has focused me a bit more on my consistently raised ESR and puffy knuckles and all the slightly tender joints. It's been quite a shock actually because as you know, generally I just don't believe I have much RA at all. I think that's a danger of coming on this site where some people have extremes of pain and swelling and joint erosion too. Its not a case of denial for me anymore but more that I just think of myself as being mainly the victim of drug side effects and tend to forget about the reason I'm taking the wretched injections to begin with!

Um.. I know I go on about this but I really do think you should ask to shift to injections. Just avoiding the digestive tract may help significantly - and if you have to take this stuff then you might at least take it in the most effective way don't you think? Tilda x

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I've got a rheumy appt. in less than 2 weeks & am planning to ask about injectable mtx. I agree that side effects most likely come & go based on the very unscientific observation that everything to do with RA is chaotic.

I know what you mean about downgrading the severity of your own RA based on the experiences of others - I have to get the blinkers out some times & really concentrate to assess my own situation. And it's true about taking the drugs for a reason - I'm having trouble sleeping too (again, unusual as well as unwelcome) but have therefore had plenty of time to remember how horrible night time was before the drugs. But the toxicity of the drugs we take for RA is a very vexing aspect of the disease. I agree with Mads below about the unfairness - can't they manufacture a new strain of mtx that at least makes us merry? xx

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oh Tilda I hope the metx at 12.5 works, it would make life so much easier for you.I have got the hangover feeling the last two times I have taken the higher dose of metx. So unfair when I didn;t have the joy of having alcohol. Could you take another milder dmard as well, I know you were on hydroxy until recently. That might help with the inflammation.

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Well for some reason my consultant and my GP seem to think I shouldn't go back on to Hydroxy. I don't think they thought it made much difference and they think it complicated matters with existing side effects too. It is a slow acting drug, even more than others, and I do know that its the injectable MTX that makes the difference with me. GP and I are hoping that 12.5 injections will keep the RA down.

[helixhelix]

I'm only about 4 years in, so don't really qualify for long term yet. Although it is generally fine as you know, and since swapping to injections I've had less and less problems. But I know when I asked a similar question a while back I had replies from people who'd been on MTX for 17 years+ with no problems at all and no emerging tolerance issues. Like lots of RA things it really does seem to be remarkably random, so there's a good possibility that things will settle down for you. My equally unscientific observation is that changes in drugs or doses always cause a little upset, which sort of matches your rheumy's observation that he doesn't like too much messing about. So hang on in there and maybe you'll go into an "every week gets better" period. Px

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Yes I do agree with you that changes in drugs and dosages should be avoided once things feel right. I'm really hoping I settle to this amount - bit worried that both consultant and GP are concerned about me going beneath 15mg but its so nice not having the overwhelming foul taste and nausea that its worth the risk I feel. At least I'm still on it and will hang in there for as long as possible rather than chop and change - which seemed to lead to physical chaos last time. X

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PS but no regrets since it also forced me to acknowledge that I do actually have this disease!

[earthwitch]

Do you think your latest rash of side effects was caused by the stop-start? I would have said that jumping straight back in at the previous dose after having nearly a month off it would have been rather a shock to your body, and its only now that you are getting used to it again. It might be that you can build it up again, if you do it very slowly. I wouldn't be in a hurry to increase again too soon though - let yourself get thoroughly used to the current dose before even thinking about trying an increase again.

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Well yes that is what I was wondering I suppose. Its great that you people have tried to answer but really the only one who can answer to any extent is Polly so I was kind of hoping that some longstanding MTX users might crop up here and tell us how this drug has been for them re fluctuating side effects. Also wondering whether to push to get back on Hydroxy if I start flaring up again or whether I'm going to be stuck with NSAIDs and stuff while on holidaying in Cornwall - driving down with dogs, boys and mother-in-law. I don't care too much about pain compared to feeling sick and foul taste - painkillers are very effective if you hardly ever touch them but nothing gets rid of a foul taste for long.

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Ps the itchy scalp and tummy pain started when I was off the meds which seems more than a coincidence and my doctor would only prescribe same dose so I had no choice but I don't think it made any difference judging by my bloods. MTX by injection at 17.5 almost gets shot of my RA but the price is too high!

[Frankiefocus]

I would be lost without Methotrexate at the moment as it's the only thing that I can handle, hydroxychloroquine made my tinnitus worse and Sulphasalazin made me very depressed. I tested both hydroxy and Sulpha on and off for the last two years and kept a tight record and I was right they made me depressed and tinnitus was so bad I could not sleep. Methotrexate and a complete diet change is the only way forward. I had to resort to a plant-based way of eating and quit the booze. I do take a glass when dining but that's a laugh now with Covid. You need to give this drug a change as everyone is different thats for sure.