A bit nervous about starting methotrexate

So I went in for my follow up appt. with my rheumatologist we discussed that I was still experiencing the morning stiffness as well as the pain in my hands and feet morning til night, so the diclofenac wasn't helping. I also explained that my fatigue had seemed worse over the last 2 weeks even though i was going to bed earlier. She dismissed the fatigue as not related to the PsA which I thought was odd based on what I've read here and other places.

Anyways, she prescribed me 4 x 2.5mg of methotrexate once a week along with folic acid daily and a follow up in 4 weeks for labs to check liver/kidney function. Any advice on the best time to start taking (morning or night) and what kind of side effects have you all experienced? Reading the list of possible side effects is making me question if I should even start taking it, so I thought some real life experiences would help ease my worries (hopefully)!

Hi there Rob,

I've been taking Mtx orally for 4 years, with a break of about 7 months last year. I've never had any side effects from it that I could feel, though I have had persistently raised ALT, a liver enzyme, which was thought to be caused by Mtx. The ALT has now been normal for months though, without rhyme or reason, and a liver scan early this year showed my liver to be in good condition.

I guess I'm just weird because I 'like' Mtx, not that I'd take it if I didn't need to, I'm not quite that weird! But I started on it when first diagnosed and it made me feel a whole lot better and eased my symptoms considerably. More recently it's become clear that I really need it to prevent psoriasis otherwise I'd let Humira do the job on its own.

10 mg a week seems a good, low dose to start on. The main advice I can give is to drink plenty of water regularly through the day and even some at night unless you sleep like a log. Water seems to help prevent side effects though it seems rheumys often don't mention that. Night time might be the best time to take it, that way you have a chance of sleeping through any nausea or headache. But if you find it doesn't give you any problems then you surely won't care what time of day you take it.

Those who have had nausea and other digestive problems as a result of Mtx often try injections instead as they bypass the stomach.

Fatigue's not related to PsA eh? Hmmm!

Wishing you good luck, don't assume you'll have side effects 'cos travelling hopefully seems to help a bit.

I also take methotrexate no side effects other than fatigue which we already have. The medicines are all a bit worrisome but we have to hope they will help and not hurt.

Hi, Rob! Of course you are nervous. We all remember what that was like. If you go to our Newbies' Guide, there's a load of information about our friend MTX, and also this article, which talks about some possible reasons why starting it seems so scary:http://discussion.livingwithpsoriaticarthritis.org/forum/topics/the-other-...

Myself, I've been on doses ranging from 10 to 25 mg a week (that's max dose) and I've never had a single side effect. Whether it has made me feel better is debatable, but my docs seem to think it's a good thing to take so I do.

Fatigue? Well maybe we're all imagining it, but fatigue has been very much part of my disease, and I know others have found the same. Have a look at this: http://discussion.livingwithpsoriaticarthritis.org/forum/topics/6339595:To...

Anyway, food for thought. And let us know what you're thinking!

Hi Rob, and welcome :slight_smile: I started mtx in February. I was very nervous too - that side effects leaflet makes it feel like you’re choosing to poison yourself!

On the advice of people here and elsewhere, I took my dose (15mg) a couple of hours before bedtime, and did get a bit of nausea. I went to bed when it started, and it didn’t interfere with my sleep. However, although it was only mild, it became constant - so after a couple of weeks, I was feeling slightly sick all the time, which was obviously unpleasant. My general fatigue was much better, but 24 hours after taking the mtx, I was hit by a huge wave of tiredness that lasted about a day.

I figured slight nausea and 24 hrs of exhaustion were worth it, because in other ways I could feel an improvement in pain, swelling and general energy levels :slight_smile: However, when I told my rheumy nurse about the side effects, she offered to switch me to injected mtx instead. This bypasses your stomach and so reduces any GI side effects. She showed me how, and I switched 3 weeks ago. It’s much easier than I expected (I find it very easy, and painless) and I no longer feel nauseous all the time.

I have just seen a specialist rheumatology team and my dose has been increased to 25mg. I’m hoping the nausea doesn’t come back, but if it does, they’ll either drop the dose and/or try something else.

Generally though, I feel so very much better now that I’m happy to be on mtx, despite the mild side effects. I’d definitely recommend trying it, to see if it suits you too. Good luck! :slight_smile:

Ask if they have samples of Rayos… It’s a time release prednisone. 5mg every night before bed and I sleep well. When I wake up there is a noticeable reduction in swelling and tenderness.

I take the methotrexate injections as well, as I was very nauseous with oral. It’s very easy to do, and I don’t feel pukey after taking it.

I've been on mtx since 2011 - so 5 years. I started with oral, but gradually had worsening stomach upset/nausea (to the point that I was "fluish" each weekend) so my Rheum switched me to injections, which have been fine. I'm always a little more tired after my doses of meds, and the mtx seems to be maybe causing some GI upset again, even with the injections. But it's been 5 years of the the higher two doses so I feel I've gotten some decent mileage out of it.

When I first started it though - I pretty much slept for a week. This may have been combined extra fatigue from the disease itself (as I was flaring and newly diagnosed), grad school (second year MA student and TA), and the meds themselves so of course YMMV. I've also read that many people have had their side effects lessen considerably over time (mine seem to do the opposite, but I've a fairly contrarian nature anyway) as their body adjusts to the medication. It can also take a while to kick in - I didn't notice anyone say that - so if you don't feel any noticeable change for the better, know that it can take a bit.