Hi can anyone who is on MXT help please? I'm currently on 15mg (have been for 5 months) but may need to be increased when I see Rheumatologist next week - I was hoping to go up to 17.5mg. I mentioned this when I was there yesterday and was told that they won't prescribe 17.5 - it will have to be 20mg. I asked why but she didn't know
I'm reluctant to increase by 5mg as when I went from 10 to 15mg I had bad side effects and my hair was falling out for ages - it's only just stopped. Does anyone know why they don't prescribe 17.5mg - is anyone on that dose? I'm on Metoject but I know they do 17.5 pens. Shall I stand my ground or accept 20mg? Any thoughts appreciated. Many thanks.
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Dobcross1
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Get hold of your rheumie nurse & get a straight answer....it is probably something very simple like going from 2 to 4 to 6 to 8 tablets...... which is easy to remember.
But if your rheumatologist wants you on 20mg why not give it a try?
If you have tolerated 15 mg for five months it won’t be such a dramatically different increase % wise.....& many are on even higher doses.
I went up to 25mg & it was fine.
I know it is scary.... but believe me it’s better than pain 24/7.
You had a 50% increase...& you so unless my maths is wrong (quite likely) you could tolerate 25% better.
I had 7 great years on Mtx ....despite taking a long time to agreeing to try it.....I only needed the odd painkiller & really thought I was set for life ...it wasn’t to be, but I am extremely grateful for those seven years .
Yes of course I hadn't thought of it like that - I was thinking it would be another 50% increase (maths was never my strong point!!). It so helps to speak to others who've had the same or similar experiences. Thanks for your help.
I’m on 17.5mg pens...the pharmacist wasn’t ecstatic as no-one else using that pharmacy is on them, but tough! (I’m hoping to go down to 15mg in October....maybe we should swap!)
I think it’s reasonable to ask to go up in small steps...and if they won’t do it with a pen what about asking to top up your 15mg pen with a 2.5mg tablet for a few months to see how you get on?
Good idea I didn't think of that. I think I just panic at the thought of any increase but, after 5 months, certain parts of me aren't responding so have to bite the bullet. I'll see what he recommends and at least I will have considered other options. Many thanks.
Hi, I'm on tablets and was on 15 mgs for 6 months (10 before that for 2 mos.) and recently been upgraded to 25 mgs so totally understand the dread. The pain I experienced on 15 was practically nil so (without being told the reason) I am assuming the high dosage of prednisone was the reason for the increase so I could get the pred. tapered off. I am 3 weeks into the 25 mgs and feel pretty sick but I am tapering off the steroids- today down to 15 mgs finally and going on down I hope with no flares. Also on 2 gms sulfasalazine which is nothing to sneeze at either. I wish I could go back to 20 MTX but will give the 25 a go to see if its okay.
When I say 'pretty sick', I mean all over myself, nothing specific. Perhaps I need to crank up my water intake or something. I never felt poorly on the MTX, just a few mouth sores and hair loss but these all disappeared, including my hair. 😁 Hope this is helpful.
How odd. I've been on MTX injections 8 years & in that time my doses have been 15mg, 17.5mg & my current dose 20mg. My last change was from from 17.5mg to 20mg, my Rheumy doesn't like to over-dose, with me anyway, in fact this latest increase was a trial which actually worked out as previously I'd responded badly to 20mg.
So, in answer to your question... I really don't know! I'd be tempted to tell them you'll try 20mg but if the side effects are really not tolerable you wish to try 17.5mg. Just thinking that there may be a specific reason they want you on 20mg & the 'don't know' was a lazy response.
Yes its whatever suits each person isn't it. If you feel ok it's a shame to change. Hope you can go back to the lower dose and feel ok. I'll definitely ask for 17.5 and see how it goes. Thanks
That's quite strange. I started at 15mg and titrated to 25mg. I wasn't doing well at the top dose so swapped to metoject then lovely rheumy dropped it to 17.5mg. Too high a percentage drop meant symptoms ramped up again so back up to 20mg I went. The human yoyo seems to have stabilised at 20mg, at least for now, and it's all good. I have been told that it's the percentage rise or fall that makes a significant difference. Going from 15mg to 20mg is only 25% (I think) so well worth a go, perhaps.
I’ve been trying to reduce my MXT, under guidance of the consultant.
I was on 22.5 injections, and dropped to 17.5. I was fine for about 3-4 weeks then wham! I relived how bad RA was back in the bad old days.
I went back up to 22.5 (with a steroid jab to help alleviate pain). A few months later, once stable again, I tried 20. Same thing happened so I’m back on 22.5 again.
I was so positive and determined that my reductions would work, but the difference just 2.5mg made was astounding.
Anyway, I digress slightly ..... 17.5 is a recognised dosage.
As I have found over the years nothing happens quickly when adjusting drugs.
Don’t be afraid of MXT - it’s given me my life back.
I’ve had awful side effects to start with but stuck with it.
Hi yes, a small 2.5 increase or decrease seems to be able to make a big difference doesn't it... that's why I'm hoping 17.5 will be enough for me. As you say it all takes time with these drugs to get where we need to be. Thanks.
I’ve been gradually increasing my Methotrexate this year and been very lucky as I’ve had no side effects. The one thing I think helped me was to split the dose . As soon as I got to 12.5mg I was told to split the dose By taking 3 in the morning and 2 in the evening (could have done it the other way round!) My folic acid was increased to 1 every day except Methotrexate day. Next week I will go up to 15mg, so it will be 3 in the morning and 3 in the evening. Maybe you could try this?
That's a really good way to increase I think but I couldn't keep the tablets down so I have to use the injections. They do come in small increases of 2.5mg though. I have actually just thought of asking (if I have to go up to 20mg) if I could split 2 x 10mg injections over the week but I don't know if this would be allowed. Thanks for the idea!
My consultant wanted to move me from 15 to 20 on Metaject even though I felt fine on 15. My GP said he wasn’t happy with prescribing that dose, to the noticeable annoyance of the consultant..!! I changed consultant and hospital and the new consultant said in his view I don’t need Mtx at all!! I’m very settled on 15 so will stay at that dose and see what happens.
It's really frustrating if one consultant wants to increase then another says you don't need it! Good job you know your own mind and body and have stuck with what's working for you! I'm happy at 15mg but it's not quite controlling the RA and I don't want to risk any further joint damage so unfortunately I think I'll have to increase but I want to go as small as possible. Thanks.
My nurse pointed out that 17.5 injection is as potent as 20mg in tablet form, so if they're trying to push you onto 20mg injections, that's equivalent to 22.5mg in tablet form which is just shy of the recommended maximum of 25mg.
If it's available as an injection at 17.5 (which it is) I can see no reason why they shouldn't comply with your wishes. An increase of 2.5mg may not sound much, but for me it was the difference of my hair falling out at 22.5mg and not, at 20mg. So obviously, as you've already found out, a jump of 5mg is too much for you to tolerate.
As an aside, how much folic acid are you taking? When I switched over to the injections I started taking folic acid six days a week as opposed to only once a week when I was taking the tablets.
Thanks so much for this MissMinto its incredibly helpful. I had no idea that the injections are slightly more potent than the tablets. I'm definitely going to ask for 17.5. I'm taking 5mg folic acid 6 days a week already so no opportunity to increase that unfortunately (though I've considered taking it 7 days as the Americans do!). Thanks again for your help.
Glad to be of help! The reason we're not supposed to take folic adit on methotrexate day is (as I understand it) that it reduces the efficacy of methotrexate, so probably best to stick to the six days a week so you don't negate its benefits.
Yes, I should have mentioned that my GP felt that increasing my dose from 15 to 20 was too much owing to the increased potency of taking Mtx by injection. Obviously it all depends on the clinical background and medical advice is always needed (even if it was perplexing in my case!). However, I’m pretty sure it’s available in 17.5 doses via Metaject and this would leave you with the ability to increase it again if necessary.
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