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Liver bother 😡

Three weeks ago I was taken off mtx as my liver just didn't seem to be coping very well. My ALT was creeping continuously higher. Up until this point the mtx was working fairly well, yes the odd flare but in the grand scheme nothing I couldn't cope with. It does leave me a bit ill on a Saturday but I felt it was a small price to pay to be pain free. Whilst off it I started to feel the stiffness and pain increasing again and started struggling, especially in the mornings.

I just so happened to have a rheumy app on fri and he decided to put me back on the mtx but lower the dose by 5mg. I sort of panicked as I know the 20mg has been working and I don't want to take the risk of flaring on a lower dose. I'm a single parent with 2 kids and I work, so really can't afford to be off my feet!!

I explained my fears to him but he just said that obviously my liver was unable to cope with the 20mg and his hands were tied.

I left feeling a bit frustrated and let down.

Anyone else experienced the same but was given a different option?

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I've always had higher than usual ALT scores. Following an abdo scan it turned out this is largely due to a fatty liver. My Rheumy then raised my upper limit from ALT 80 to ALT 120 as I was regularly having to stop Mtx. Ive recently started Humira injections and had Mtx reduced to 7.5 mg so hopefully that's the end of high scores.

Paul

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Similar though slightly less extreme situation for me my ALT never got as high as 80 but was on the way there..

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Hi

Sorry to hear you’re having such bother. I hear that you’re worried about reducing your size but I’d go with what your rheumy suggests- 15 mg may also work for you?

Maybe give it a try and if you find it’s not doing enough, ask to try another med?

Wishing you the best of luck

Marie

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Reducing your dose - not size . Typo 😔

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It was when I wasn't doing as well I went from 15mg to 20mg tablets that my liver decided it couldn't cope. That was when I started injections, 20mg at first to get me back to controlled but my liver results were still high so I went down to 17.5mg & a months course of steroids. Once they were were finished I was back under control, 17.5mg was suiting my liver. I've since tried 20mg again, despite explaining to my present Rheumy what happened last time, but history repeated itself, my liver objected so back down to 17.5mg I went. It's now on my notes that I don't go above 17.5mg. I've tried double therapy with MTX & sulfasalazine & leflunomide unsuccessfully so remain on just MTX & low dose pred.

I hope my experience gives you some hope that it can be done but if it can't for you there are options, you won't be left high & dry.

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sazlav83, I had a similar situation but with my lungs. I started to respond quite well to the mtx, no disturbing side effects until my rheumy raised the last 5mg... From the first time I took the new dose, I started having problems with my breathing, it only got worse ... until breathing was painful. So my rheumy decided to stop the treatment with mtx and start with arava ... I insisted to lower mtx and continue as before because I was really getting better; however, he told me he didn't want me to be like that so he changed to arava ... and I'm still waiting for it to start working.

If you know that mtx works well for you, I think lowering in 5mg is better than an alternative of changing the treatment altogether or injuring your liver.

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Thanks everyone, I know I probably sound a bit irrational but it's just that fear factor of changing what's allowed me to keep going!

Thanks again, I'll plough on and keep the fingers crossed!

Sarah x

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Yes I was given no choice. Eventually a different dr put me on leflunomide which doesn’t have the same sedeeffects.

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And the gastro people are doing a study which shows that coffee helps your liver to repair itself. Look it up there are several, mines based in Edinburgh

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Please don’t forget in your quest to relieve the pain, that you can’t live without your liver. I had high enzyme scores for many years until they finally figured out that the liver problem is part of my auto-immune problem. Now I must take azathioprine, which does nothing for my pain, just so my own body will stop attacking my liver.

I hope they are able to figure something out to help you. 💙

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MTX hammered my liver although only on a small dose. The NHS push this as a cheap and effective treatment for RA but always turned a fairly deaf ear on my reports of the side-effects. My ALT was always on the top-end of the acceptable range but they always said it was "perfectly okay"...

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I came off MTX after a spell in hospital with ALT of 958. I’m now on Rituximab (from today it’s biosimilar) and Hydroxychloroquin. Is like to drop the Hydroxychloroquin but Nice won’t authorise payment for. Biological without a DMARD. My liver is fine, anyway.

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May I ask how long you have been on MTX for?

The reason I ask is I had a couple of higher ALT readings in the early days when I was on 15mg. My Rheumatologist said lets see how we get on. And after those dodgy results my ALT returned to where they should be.

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Since last June Joy. My ALT usually sat somewhere in the 50's but then jumped to around 120.

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I just had a look at my 'bloods spreadsheet' and it was after the first couple of months that my scores went beyond the limit. At the Clinic I go to the range needs to be between 0 and 55. I had also made a note on the spreadsheet from what the Rheumatologist Prof had said to me back in 2015 when I started taking MTX. He said "we don't allow ALT score to go beyond 125".

Sorry I cannot be of more help.

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I like you was doing very well on 20mgs until my alt went sky high. Reduced to 15mg then to 10mgs until my rheumy decided enough was enough and I was started on Benepali and methotrexate was stopped completely. I have yet to have 2 full months in it since starting it last sept due to various infections and illnesses that raised my alt again. Bloods back to normal again and back on it. Hopefully for a bit longer this time.

Hope you manage to get on an even Kiel.

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Aw you too Neverending63, I'm sure you're fed up! Fingers crossed for you!

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