Increasing Methotrexate : Hi there. I'm hoping for a... - NRAS

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Increasing Methotrexate

Sebastian247 profile image

Hi there. I'm hoping for a bit of insight.

I've been taking MTX, 15mg for 2 1/2 months. My symptoms, and CRP have steadily got worse since I started MTX (previously on Sulfasalazine) and stopped prednisolone (the only drug that's worked so far).

Last week the rheumatology nurse increased my MTX to 20mg (and I'm back on pred for a month).

I was wondering if others who'd had their MTX dose increased, experienced an improvement to their symptoms?

I just trying to gauge the likelihood the increase will help, given MTX hasn't worked for me so far.

I'd be very grateful for any experiences or thoughts folks are willing to share.

Many thanks.

Seb

25 Replies

Hi Seb I started off on 15mg methotrexate injection then went up to 22.5mg and it was an improvement. They then added in hydroxychlorequine 200mg.

I wake up with no stiffness, methotrexate has changed my life. I don’t really know why they upped if but I’m absolutely fine on it no side effects. If I do get fatigued I put that down to the RA and that is hard to treat. In my experience the medical profession don’t really take that seriously and don’t try to help with it either ! I hope you get some improvement. 😀

Sebastian247 profile image
Sebastian247 in reply to Azzure

Thanks for the help. It's helpful to know about the fatigue too. Fingers crossed the increase helps. Seb.

Yes it’s very common to start mtx on a low dose and then increase it. This is what I did. I think it helps your body to adjust by not going in full whack and also if you did that you would not know if a lower dose would have had the same results. Many people take 20-25mg and it works for them. It’s all a bit trial and error with RA drugs sadly until you find the best mix for you. 🤞🏻 You get a good response. Let us know how you go. Good luck

Sebastian247 profile image
Sebastian247 in reply to KittyJ

Thanks Kitty. It is very trial and error. I'll keep my fingers crossed it helps. Cheers. Seb.

Sohmui profile image
Sohmui in reply to KittyJ

Hi Kitty 3 - Overseas I was started on 15 mg, and as symptoms improved the dose gradually reduced until I was only taking 5 mg. I was symptom-free and regarded 5 mg as a kind of maintenance dose. But on return to the UK I was told that taking only 5 mg was like not taking it at all. It was stopped altogether. However, my symptoms recurred and I was re-started on 10 mg. I am not symptom-free on this dose but managing well. However, because my LFTs are now raised I have asked my rheumatologist if I could reduce the dose to 7.5 mg to see if that might help the liver.

I always thought the plan was to start on a high dose to 'knock it on the head' so to speak, then reduce the dose as symptoms improved. I wonder if I was wrong about that.

Seb - I hope your RA is better controlled with the increased dose. Let us know how it goes.

KittyJ profile image
KittyJ in reply to Sohmui

Each rheumy will have their different thoughts on what’s best for us, there’s no set standard, maybe if it’s your first RA drug they would start high but I don’t know, I just know this is what I was told at the time 😊

I started on 15mg tablets (along with Hydroxychloroquin) and went onto 20mg injection and then 25mg. There was definite improvement but not enough so they added Sulphasalzine which really made a difference for me and I was able to drop the Methotrexate back down to 20mg. I assumed that they Sulphasalzine was doing the heavy lifting but when I had to pause the Methotrexate for a few weeks things really went backwards and the same happened when I reduced the Hydroxychloroquin so for me, it's definitely the combination which works. Hopefully the increased Methotrexate will do the trick for you but if not, don't hesitate to contact the nurse again - sometimes we have to push a bit 😉

Thank you. That's quite a cocktail you're taking. How on earth do they figure out what is doing what!?

When I started MTX I was told give it at least 3 months. It's difficult to know whether to struggle on for the 3 months, or call sooner if things aren't improving. I took your advice and phoned, and I'm glad I did, and I'll do so again. Cheers. Seb

Sohmui profile image
Sohmui in reply to Sebastian247

Hi Seb. Just to say it took four months for me to improve on 15 mg. It was a slow process. I hope the increase helps and you can gradually reduce the dose as happened with me. Good luck!

Yes, I did when I first started taking meds. Eventually was on 20mg + hydroxychlorequine and was fine for ages. Eventually had mtx reduced and am now on 12.5mg via ipen. Injections are better for me as the tablets used to upset stomach.

Sebastian247 profile image
Sebastian247 in reply to ABwn

Thanks. I did get stomach ache when I very first started MTX. I was up last night feeling very sick, and persistent tummy ache, I guess due to the higher dose. Hoping it passes and I get used to the higher dose quickly. Best wishes. Seb.

ABwn profile image
ABwn in reply to Sebastian247

There are many other medicines they can try you on. I find the Ipen much better. Doesn't go into your digestive system. Take care and don't worry about letting your doctor know that you feel very rough with it.

Hello Seb,Hope the increase in methotrexate works for you.

Unfortunately it didn’t work for me & I did feel pretty grotty for a couple of days after my weekly dose but we’re all different.

Thankfully there are a lot of effective treatments available now for RA, good luck in finding the right one for you.

Thanks. I was up feeling very sick last night, and still have tummy ache. Worse than when I first started MTX. Hopefully I'll get used to the higher dose quickly. Best wishes. Seb.

Hi Seb, it sounds like a difficult period of trying to find what works for you, I hope the dose increase (and prednisolone) gives you some relief.

I started off on 20mg MTX plus hydroxychloroquine and pred and that was increased to 25mg after a month. There were improvements in my symptoms but mostly due to prednisolone at first - it took a good 2-3 months to start to see the effects of the DMARDs. Since then I've moved from MTX tablets to injections and that seems to have brought further improvement, though it's been gradual not dramatic.

Eight months down the line my symptoms are markedly better than at diagnosis and I'm back at work part-time; I'm still taking prednisolone but at a lower dose than previously which indicates that the DMARDs are helping even though for the first couple of months that wasn't really evident. So it could well be worth trying. Just hope you find the combination that works well for you, and that it comes soon. Good luck with it.

Thanks. You've had a tough time with it too. It's been a year since my symptoms started so progress seems painfully slow. But I understand there's a lot of trial and error involved. It's knowing when to ask for help while waiting for the drugs to start working I struggle with. And not wanting to pester the NHS. Cheers. Seb.

It sounds like we're on similar timeframes - my symptoms started around last Feb/March and I was diagnosed in October. It's a real experiment isn't it, and so very slow to live through. From a symptom perspective, I have to say I feel lucky to have been kept on prednisolone while the DMARDs start working (or not) although it comes with its own complications of course..

Just a thought - I noticed from the thread that you're having trouble with side effects with the increased MTX, and wondered how much folic acid you're prescribed. That can help a lot. I think the usual max is 5mg six days a week (not MTX day), so if you're currently taking less than that then it might be worth having a chat with your team. Could potentially make the MTX more tolerable at least, while you're working out how effective it's going to be.

Thanks VR. We are on similar timeframes. My symptoms started March 21, and diagnosed July. I've just checked, I'm taking 10mg folic a week. I'll see how it goes....

It has been a rollercoaster coming on and off prednisolone. But as you say even that has it challenges. I don't sleep for days at a time whilst taking it. Perhaps why they take me off it.

It's such a shock and an adjustment from a previously healthy life. I'm so grateful to you, and everyone who's been through it, still going through it, and offered advice and support and most of all kindness and understanding. It's such a massive help.

Cheers.

Seb

I was on 20mg MTX for a long time, and it controlled my pains. Then I had a severe flare of my feet, and ultrasound confirmed it was due to inflammation. They increased my MTX to 25mg, and my pains quickly subsided and was able to mobilise again. Prior to the increase it could take me 20 mins to walk 50 metres. That was 2yr ago, and I haven’t had an issue with my feet since. I’m fortunate I don’t tend to get side effects, so still tolerate the oral dose

Thanks for sharing your experiences. Hope you continue to do well. I had fairly mild side effects to MTX on the lower dose. Just started the higher dose on Thursday and felt very sick all last night and still have tummy ache today. Hopefully it'll pass and I'll get used to it quickly. Best wishes. Seb.

Methotrexate was increased to 25mg by injection for me. Unfortunately I had unacceptable side-effects so had to stop it altogether and transfer to other medication.

Have you looked at the treatment pages on the NRAS website so that you are well prepared to discuss them in case you need alternative treatment? nras.org.uk/information-sup...

Thank you. I'm having worse side effects on this higher dose but it is early days. Yes I have been using the NRAS website to try and get better educated. There's so much to take in, and so much information available. Many thanks. Seb.

Hi, With Mtx increases, it tends to be in 3 monthly 5mg increments, until they find a ‘fit’. I went up to 20mg I think and then had Sulfasalazine added 1 tablet at a time until I hit 4 (If I remember rightly, again with 3 monthly increments). I finally went up to 25mg (+ 4 sulf) about 6 years ago, after having remained on 22.5mg + 4 sulf for a few years, and have been on that ever since. It’s a wait and see game I’m afraid, with plenty of pain in the meantime ☹️.

It’s so your body has time to adjust to things. Ask for your folic acid to be ‘upped’ to 6 days a week. Also cyclizine (antiemetic) an hour before Mtx. *I suffered for years feeling awful before that was even offered 😳🙄.

Actually, just checking my notes, Sulf was added after I had been on 15mg Mtx for a couple of months. Sulf 500mg x1 increased weekly over the course of 4 weeks. I stayed on that for 6 months and then tried the injections of 20mg Mtx. That made me REALLY poorly and freaked me out. Went back on the tablets for a few months and then increased to 22.5mg Mtx. That whole process (from the beginning of meds) took 21 months.

Thanks. That took a while to work through. If the MTX side effects continue I'll ask for something to help. On 15mg they eased after a few weeks. But I'm feeling very washed out today, which I think is the prednisolone. It was like this when I started it before. Thanks for sharing your experience. Seb.

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