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About to start methotrexate, any experience / tips?

(70 Posts)

I'm about to start methotrexate for psoriatic arthritis. I work five days a week, two kids and I'm dreading the side effects. Any tips on how to manage? My boss suggested I take them Monday night so as not to ruin my weekend with my family grin. i have a good boss.

I like to be organised so I'm considering asking to work from home they day after the dose for the first while. please tell me if I'm overreacting wink

booksandchoc Tue 22-Jan-13 20:07:42

DH is on methotrexate and gets really tired/loss of appetite the day after he takes it. I would definitely have a day at working from home, at least till you are used to and know what side effects you will have. Are u taking frolic acid once a week or every day except methotrexate?

I have to pick up the prescription from the hospital tomorrow.folic acid wasn't mentioned but I will ask if it's not included.it looks like our local hospital goes for 10mg two days after the methotrexate dose.

crashdoll Tue 22-Jan-13 20:10:48

What dose are you starting on? Some people recommend taking a couple of tablets, then a couple later. I always just used to take all the tablets right before bed, now I'm on injected metho and I still inject right before bed. The only side effect I still get (2.5 years later) is fatigue the next day. When I started, I did feel sick (especially as the dose was being increased) but cyclizine kept the sickness at bay. I take 5mg folic acid every day except the day I inject. I would HIGHLY recommend taking folic acid 6 days a week. The difference in how I tolerate the drug has been huge. Many rheumies say once or twice a week is enough but I disagree, as does my lovely rheumatologist.

Please don't over stress about the side effects because we are all different. Bear in mind that the first few doses can be tough to handle but it is can (and in many cases, does) pass. If you could work from home, I'd say it's a sensible precaution. Lots of people are scared of methotrexate (and I totally understand as I was too!) but there are things you can to help yourself/prevent side effects.

Sorry this was long but hope it helps somewhat!

I'm knackered all the time alreadyshock I hope this is worth it.won't know until I try thoughwink

crashdoll that's great thank you

I think the starting dose is 10mg. I'm already on sulfasalazine, celebrex, codeine, paracetamol, lansoprazole. I'm a walking pharmacyangry

yorkshirepuddings Tue 22-Jan-13 20:20:09

Try not to worry. It might not be as bad as you think.

What dose are you starting on - tablets or injections?

My DS 11 takes methotrexate for his arthritis. Doesn't seem to suffer any side effects. Doesn't take folic acid either.

I was warned that he would catch every bug going due to his immune system being suppressed. This hasn't been the case. Although a cough did take about 5 weeks to clear up recently!

grin Yorkshire

yorkshirepuddings Tue 22-Jan-13 20:23:07

You might be fine on 10mg. My DS is on 17.5mg injected. I haven't changed what he does at all.

a colleague at work's dh had really struggled in the tablets for ra and has just switched to injections and so far doing better. is your ds affected day to day? I hope they have his arthritis under control. horrid disease.

colleysmill Tue 22-Jan-13 20:30:24

When I took it (for psoriasis) alcohol was strictly off limits so my lovely friends took me out for one final night on the lash (i was young then). Next day took the pills and spent the next 24 hours vomiting and we never knew if it was the metho or hangover from hell.

I don't remember particularly suffering from side effects tbh - I did lose weight though and saved a fortune being teetotal. I took mine on a Friday night just out of convenience.

After 6 months my consultant wanted me to take a break (this might be old hat now as I took it 10 years ago) and I rebounded very badly and very quickly so I never took it again.

they now say you can drink in moderation but I'm too scared. I like my liverwink add far as I know it's a constant dose with monitoring via blood test reducing as dose stabilizes.

yorkshirepuddings Tue 22-Jan-13 20:38:08

DS did start on the tablets but the flare ups still came quite frequently. Moving to injections has helped more. Every 5 months or so the arthritis is bad enough for cortisone injections.

It is a horrible thing to have, but generally day to day his pain is under control. It could be worse. There are lots of children who suffer much more pain and lack of mobility than my DS. About 1 in 1000 children will get juvenile arthritis - it's not as rare as people assume.

On the bright side I always think there is loads of research and new meds all the time.

wonkylegs Tue 22-Jan-13 20:41:48

Don't worry too much if it doesn't agree with you remember you can always stop it and try something else.
I take mine just before bed so that I sleep through the mild nausea I get. I've generally been fine with side effects I'm on 20mg, however I can't take the next dose up as that makes me feel really nauseous. So when 20mg stopped working for me I have started on Anti-TNF to supplement rather than go up to the higher dose.
I found that my tolerance for alcohol was greatly reduced at first but many years down the line it's no longer an issue.
I can't remember if you said if you were taking a stomach protector with your anti-inflammatories as for me this has been a greater issue and getting it sorted helped with the mtx nausea.
You may get mouth ulcers if this is the case try upping your folic acid dose and try using a medicated mouthwash like Oraldene. Take it easy to start off with it's a lot for your liver to process but hopefully it'll settle quickly.

thanks wonkylegs, I have lansoprazolesmile I'm really heartened by rheumy nurse her attitude is they are aiming to get me to just like a "normal" person (just taking lots of tablets)

colleysmill Tue 22-Jan-13 20:46:05

Things really have moved on in recent years - since I took methatrexate I've tried biologics (2 types) recently which has had brilliant results for some (but sadly not me!) The biologics seemed to really hit my immune system hard - I averaged a course of antibiotics every 6 weeks when taking them when generally I haven't really noticed any marked difference taking anything else.

My particular drug of choice is ciclosporin - I find it really suits me although initially I noticed real fatigue in the evenings when restarting it this time along with the normal funny tingling sensation for the first 2 months in my fingers and toes.

2plus2 Tue 22-Jan-13 21:25:08

Check out NRAS web site it has been life saver for me since I was diagnosed last year. I had three months on MTX you should have been given information leaflets and advice on folic acid, not drinking alcohol and having blood tests. Give it a go lots of people find it really good, unfortunately it didn't like me so i am on different medication now. Good luck with your treatment smile

Pigsinblankets Tue 22-Jan-13 21:43:23

My DH takes methotexate (25mg) weekly and has very few side effects. He takes folic acid once per week and an anti tnf (humira) injection once every 2 weeks. These drugs have changed his life, he's now a very successful triathlete whereas he could hardly move before. He does drink alcohol, not a massive amount but he does also have monthly blood tests to check his liver function. As others have said, try it, you can always cut back. Good luck.

Pigsinblankets Tue 22-Jan-13 21:46:52

ps his is psoriatic arthritis too. The more exercise he does the better. Tbh the only time he has a flare up is if he doesn't exercise daily.

thank you pigs and 2 plus 2. I'm getting there with the exercise.I'm swimming three times a week.would love to go every day but can't seem to carve out more time.I'm hoping the methotrexate works so that I have less pain and am less wiped out in evenings and can go swimming instead of wimpering on the sofaangry

sashh Wed 23-Jan-13 07:45:43

Not what you want to hear but I was on it for 10 years and always had side effects.

The day after taking it was like having flu, just tired, dopey and initially I used to vomit but this did reduce to nausea after a while.

crashdoll Wed 23-Jan-13 07:48:43

Please be careful with the exercise. Many people with inflammatory types of arthrtis find it painful to move more. I read an interesting article on this only recently. Also, when your joints are hot, swollen and extra painful, the advice is to rest. Is anyone working through an exercise programme with you? Some people get good advice from a pain clinic, however I have a wonderful specialist rheumy physio who works with me to get moving.

RunnerHasbeen Wed 23-Jan-13 13:13:09

I lived a completely normal life for 6 years on methotrexate, after the first few weeks adjusting to it. I came off it to try for DD and didn't tolerate it when I tried to go back on it, I was gutted, still am, I was desperate to get back on it. With hindsight I can clearly see how much better I was on it, you will likely be able to stop taking all the anti-inflammatories and painkillers, so the feeling "like a pharmacy" will balance out.

I drank in moderation after the first year and never had an abnormal liver reading, even the day after a few drinks. In 6 years I had no hot swollen joints (down from two drainings and injections a week), no high inflammation levels, no real bugs going around. You would not have been able to tell me apart from people who had never been ill. Even though, prior to methotrexate, my wrists had been so bad I couldn't lift a cup of water, one year in I was able to do 6 day sea kayaking trips with no pain or problems. I could run, cycle, everything. I had so much more energy, I hadn't appreciated how bad that side of things had been.

Don't let the adjustment period worry you too much, give it a chance, if it works well for you, you are really lucky. If you have GI side effects, you can swap to injections. Good luck.

Well I've been and picked up the tablets (15mg methotrexate and 10mg folic acid for two days after methotrexate) and my pink book and had my chest x ray. I have my sulfasalazine bloods booked for Monday so will talk to nurse then about when to start. reading the guidance I think i might need the pneumonia jab I've only had the flu one.

Crashdoll i understand what you mean about the exercise. i am careful and find it really helps my tight muscles / tendons. My rheumy really pushes staying as active as possible. I did do a physio "back class" but it was very general. My experience is that physio just don't want to know about me as none of my issues are a quick fix. Before the PSA was diagnosed I was there at least twice a year with my shoulders/ back.

Onwards and upwards now wink. I've had very little side affects with the sulfa after the first month or so so fingers crossed my luck will continue. i would love to be able to ditch / reduce the codeine and celebrex. The long term effects of max dose celebrex really worry me much more than methotrexate strangely.

Runner have you found something else that works for you? I am fortunate in many ways as the trigger to this latest big year long flare seems to have been stopping feeding my second child. Looking back the PSA was almost certainly there before just not so bad that I went seeking answers. The one thing i have been lucky not to have to worry about is coming off meds for conception and pregnancy.

Thanks everyone smile

Yardarm Thu 24-Jan-13 22:51:45

I have been on 15mg methotrexate for a couple of years now and I don't get any side effects at all, no nausea, headaches or fatigue. I take mine on a Tuesday and take folic acid on the other 6 days. I find methotrexate a really effective medication - I now live a pain free and completely normal life. I can walk, swim and cycle and have plenty of energy. I also drink in moderation (2-3 units / week) and my liver results are always fine. I do understand your anxiety but you will see real improvements in your quality of life and overall well-being. Good luck. Let us know how you get on.

wonkylegs Fri 25-Jan-13 08:23:38

denial re Physio - NHS Physio doesn't seem to have any time to treat anything but acute problems. Since injuring my hip I have paid for some private sessions and it has been a revelation. If you can afford it I would highly recommend a few sessions mine were about £35 for 45mins

could find the physio money if I were to put myself first for oncewink there's actually a local private physio world through our surgery that I keep making to look into

vole3 Sat 26-Jan-13 05:53:40

The only other thing to mention is that you can get looser bowels with it. I am now on the injections rather than the tablets and it is much better.

Had 1 month about 6 months after starting it when I came down with 2 bouts of conjunctivitis, a chest infection & a UTI, but no problems in the last 3 years and added humira into the equation 2 years ago.

MadMumToThree Sat 26-Jan-13 07:31:26

I take methotrexate 17.5 mg weekly along with 15mg prednisone daily for sarcoidosis - folic acid once a week. I find about 2 days after mtx I have an 'off' day - nausea/sickness/diahorrea - followed by extreme tiredness/headache. This had started to improve but have just increased dose - has made a huge diff to my condition - particularly the return of my voice! Hope it is helpful to you.

crashdoll Sat 26-Jan-13 09:04:20

Do put yourself first, you are worth it! wink This isn't a new handbag or some pretty shoes, this is your health and if you can afford it, physio can make all the difference. I have private health insurance and have physio through that but it's limited and I end up paying. It is worth it if you find the right physio especially if you are motivated to do the exercises regularly.

taken first dose, working from home tomorrow.fingers crossed

bump for korma

Yardarm Tue 29-Jan-13 22:56:25

Are you building up the dose over a couple of weeks?

Hiya thanks for the bump
I reallly hope you get on with the mess and don't have any nasty side effects

Which of your joints are affected ?

yardarm, I started on 7.5mg. the prescription was for 15 but I was too scared to take all at once.Will build up as I go.just queasy this am. haven't actually got out of bed yetgrin

Korma, I have been diagnosed about a year.probably two years since I first experienced symptoms that got described as possibly inflammatory arthritis.some of my symptoms I have had for years. I'm odd in that I have very little psoriasis. my worst issues are enthesitis shoulder and now ankles, sacroilliac issues, site and swollen hands and knees. I have had shoulder and upper back issues for more than ten years. went to rheumy when hands and toes began to hurt after dc. then a big flare and sacroilliac and ankles joined in the party. at first my bloods were normal now showing signs of inflammation.

ShirleyB25 Wed 30-Jan-13 10:42:59

I've been on it about 3 years for rheumatoid arthritis and think it's the most brilliant drug ever as it allows me to work and walk normally. Initially I had tablets, and would get a really mean headache about 4 hours after taking it, as well as nausea etc. However, after switching to injections, and Folic Acid the 6 days I don't take it, there are virtually no side affects at all. I find its best taken in the morning, not sure why, but if I take it at night, it can wipe me out the next day.

Best of luck, as it is a scarey drug, but so worth it if you get relief from the symptoms. By the way, it did take 3 months before the good effects really kicked in. If it is decided that injection may be better for you, don't be put off, as it really helped to lessen side effects and isn't too bad. I'm on 12.5mg and rarely have to take anti-inflammotory drugs ( would take diclofenac 50mgs three times a day before).

redshoes Thu 31-Jan-13 14:00:10

Hi I was diagnosed with PsA early December and started on 10mg Methotrexate weekly plus 5mg Folic Acid also weekly. I was recommended to take the Mxt on a Monday and the Folic on a Fri - to help remember! I had no side effects but unfortunately no main effects either - my PsA got worse. Upped to 15mg a cople of weeks ago and I think slight side effects immediately after taking but no results as yet. I know it's a long game but I am getting frustrated and tempted to stop drugs altogether - I am still developing PsA in new places, also Psoriasis which I didn't have before I started! Hope you have more luck....

wonkylegs Thu 31-Jan-13 14:37:42

Redshoes don't get disheartened I got no benefit until I hit 15mg and then it was only minor but then at 20mg it was great for many years. I then stopped it to have DS and when I re-started 20mg didn't do it anymore so they tried me on 25mg and I got sickness and no further benefit. So I'm back on 20mg with Humira which works fantastically again. I have RA not PsA but similar applies I believe.
It's a slow & frustrating game, (I tried many meds before MTX) but when they find the right balance it's life changing.

redshoes it is the long game I'm afraid. you can also try injectable methotrexate I understand which might get you to a higher actual dose than you can tolerate on the tablets.I'm already on sulphasalazine which had really helped but I'm not near normal which the rheum team have said I have a right to expect.that's why I'm adding in the methotrexate.you just have to keep trying

redshoes Thu 31-Jan-13 16:27:53

Thanks Wonkylegs - I guess when I next see my rheumy in a few weeks he will up it again. I just feel dreadful all the time and seem to be going downhill fast sad I hope I find a level that is life-changing. My brother has had miraculous results with Humira (for Psoriasis)...

Yardarm Thu 31-Jan-13 22:29:45

It's interesting hearing everyone's experiences. I think I've slightly changed my mind from last week when I said I don't get any side effects. I do sometimes get headaches etc on the third day after MTX and I always assumed it was unconnected to the MTX because of the time lapse. However, hearing what others are saying maybe it is possible to get the side effects on the third day.

Denial, I used to be on Sulphasalazine and it was really effective for 15 years but after breaks for pregnancy it stopped working for me. Hopefully the combination of both will be successful for you. How have you tolerated your first dose of methotrexate?

Aftereightsarenolongermine Fri 01-Feb-13 07:38:03

Hi I'm on MTX & prednisolone for PA though I don't actually have psoriasis but it does run in my family. I'm on 17.5mg MTX weekly & at first it used to knock me out & the nausea was awful but I'm now able to tolerate it much better, it helps that I take it over 2 days. But I'd say it took me about 6 months to get used to it & I've been on it for about 3 years.

GP has referred me back to hospital as she also wants me on anti-tnf but still waiting for appointment. i can also recommend private Physio & pilates if you can its helped improve my mobility a

yardam, I've been fine :-) I only roll half what was suggested because I had a last minute panic but feeling quite confident about upping it next weekgrin

took half grrr I wish you could edit posts.

Yardarm Sun 03-Feb-13 20:43:16

Denial, grin at roll half! Had visions of you playing marbles with them! Glad you're feeling confident about the next dose :-)

Dosed with a cold and earache nowangry angry not sure what to do tomorrow.

Aftereightsarenolongermine Mon 04-Feb-13 19:40:56

I never take MTX if I'm feeling under the weather. But speak to your GP first mine always errs on the side of caution.

yes, hurts to breathe too so no avoiding gp in amangry angry

Yardarm Mon 04-Feb-13 23:42:25

I haven't missed mine for feeling under the weather but I did once take a week off when I was on holiday. Could also check with Rheumatology nurses? Hope you are feeling better soon.

spoke to gp. have decided to take dose as feel better today and no longer hurts to breath. bahangry hate this

wonkylegs Wed 06-Feb-13 23:12:55

I've got a cold too so you have my sympathies. I'm hoping it'll go soon as I don't want to miss my next dose of Humira.

redshoes Thu 07-Feb-13 01:31:35

How do you feel Denial? Did you take it?

took 10mg (working up to 15) Tuesday night.Was really in two minds about it. Felt awful all day yesterday, not so bad today. Hard too tell if it was methotrexate or ongoing virus but I never got out of bed yesterday.angry

Yardarm Thu 07-Feb-13 12:48:03

Denial, I also take mine on a Tuesday. I feel ok on Wednesdays but I have to make sure I drink plenty of water on Thursday to avoid feeling rubbish on Friday, so I would say keep your fluids up and that might help. Best wishes thanks

Thanks yardarm. I have a pint of water on the go beside megrin .strangely enough I had no joint pain all weekend.Maybe my body was too busy fighting the cold to fight me?

isleangel Thu 07-Feb-13 15:09:30

Thanks so much for starting this thread denialandpanic. My DH has been on methrotrexate for 7 months now and he hasn't had any side effects, but then it has done nothing else for him either and he is still getting steroid injections, anti inflammatories and co codomal, and he is still unable to move very well. His consultant is putting him on sulfasazine as well as the methrotrexate and we were quite worried about the side effects of it, as it sounds worse than the metho. But this thread is reassuring. I hope you're recovering thanks

isleangel the rheumy made a point of saying several times to always take the sulphasalazine with food.I started on one a day and worked up increasing one a week to four a day and then six but back down to four now. when starting I always felt wiped out the afternoon after the day I raised the dose but once on full dose felt absolutely fine.it has helped me most with morning and evening stiffness.also my crp and esr generally came down. I started the methotrexate because I was still getting to much random joint pain and flare ups.

wonkylegs Fri 08-Feb-13 10:27:47

Isleangel sulphasalazine is often considered milder than Mtx although it can turn your pee & tears yellow which can be a shock. I seem to recall that side effects are less common with sulphasalazine which is why they often try it before mtx & it's safer if you are trying for a baby/bf etc
I tried it as my 1st DMARD but ended up coming off it due to excessive bruising, it also wasn't as effective for me as the mtx.

isleangel Fri 08-Feb-13 11:30:40

Thanks Denial for the information. We only found out by reading the drugs leaflet, that he was supposed to take the first doses at night, so the food thing will be very useful, and its good to be able to plan round when he might feel sick. My DH is also getting very bad flare ups on the methotrexate, every time the steriod injection wears off, so his consultant says that sometimes the 2 together can dampen it down, although he says if this doesn't work they will put him on the biologic injections, so its just a waiting game, as I'm sure you know well! It's just so good to know that others are going through this too and that there might be light at the end of the tunnel. smile

Wonkylegs, I didn't know that the sulpasalazine was milder than mtx. We did read all the side effects and knew about the pee and tears (maybe that made it sound scarier!). He is going to start it tonight so we'll see how it goes.

hope it works mrisleangel! It's the biologics I've got the big mind block on.but luckily I haven't been bad enough that they've even been mentioned.

Snowbell Fri 08-Feb-13 21:40:35

hi,
I've been taking MXT for 4 years now for RA. I was on 25mg but am now on 15mg. I take mine on Friday night. I find it hits my system 16-18 hours later. I swear I literally feel it hit me. I get this overwhelming urge to lie down and sleep, and don't feel great. If I can sleep for an hour I'll feel much better when I wake up. I used to take it on a Saturday night but found I was really struggling with work on Mondays and Tuesdays. Now I have got over most of it by Monday. Does bugger up your Saturday nights a bit but depends what your social life is like! I can get a bit nauseous on Saturday night but I just eat something. In fact I feel like I am eating constantly for the following few days!

Hulababy Fri 31-Jan-14 18:30:23

Handy thread to find today - just started methotrexate today, also for PA.

I already take sulfasalazine, omepraxole, diclofenac, co-codamol ad a small dose of prenisolene. This is to go on top - small dose of just 7,5mg a week, 3 tabs once a week. Also have folic acid to tak - one tablet, once a week - 2 days after taking the methotrexate. Dose of methotrexate to be monitored and adjusted as and when when I go back.

Have been having a really painful and difficult flare up affecting most joints since November. Been on extra steroids and had a steroid injection, later didn't work at all. But the doctor is very keen to get me off the prednisolene completely. Was down to just 1mg a day prior to the flare up - but once tried to drop it further the flare up started and kncock me off course.

The flare up is settling a bit now I hope - still having some pain in mornings and end of day, and tiredness is there a lot, still stiff and achy in places - but I can walk much better again. No chance of wearing any form of heels for now though! Having odd bad day still though, such as Wednesday tiis week - couldn't even write sad

I haven't really been told of any extra side affects - so having taken my first dose at lunch time today, we shall see.

Hulababy Fri 31-Jan-14 18:32:51

Oops - sorry, didn't realise this thread was a year old - no idea how it even came up - misread the 13 in the date! Ignore!

grin I'm still here :-) I've ended up on 25mg. worked pretty well on peripheral joints but zero influence on back. Hope it works for yousmile

Ha and this time party year I want thinking about biologics I'm being for them now. Bloody disease

I mean last year

And begging

Hulababy Fri 31-Jan-14 18:51:05

Thanks for responding. Fingers crossed then.

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