Hi I started methotrexate four weeks ago. I started on 10mg for two weeks, then 15 mg for two weeks and am supposed to go to 20mg this week as a normal dose.
After the first dose I got some discomfort and felt sick. The second week I was also given sulfasalazine and felt terrible. They decided to stop that and then rechallenge the next week. So last week I took the 15mg methotrexate and the sulfasalazine. I was extremely unwell, with severe stomach pain but it was put down to the sulfrazalizine and it was stopped. As I don't have any other symptoms it was decided I was tolerating the methotrexate well.
I took the tablets on the Saturday and it took until the Friday to recover. Last Saturday I took just the 15mg methotrexate. By late evening I was doubled up with stomach cramps and then was sick and got diarrhoea. It is like I've drunk a vat of acid or swallowed glass. I called the hospital to say I was very concerned as I wasn't very unwell and still am. They made a sarcastic comment about me being a regular (ive had to call every week as I've been allergic to everything they've given me so far).
They upped my dose of folic acid from 5mg a week to 5mg a day and told me to carry on taking the methotrexate. I asked if I could swap to injections and they just snorted.
There is no way I can take another dose of this, it's like I've developed a stomach ulcer. My work are furious because I have missed several important meetings. Has anyone else had an experience like this? As there is no way in can stomach another dose of this - quite literally. I am concerned I will be left with no medication at all for my RA. I am also concerned it had done lasting damage as this time I am not improving regarding the stomach and bowel problems....
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Gretchy
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As with most of the RA meds everybody reacts differently to each one.
I used to take methotrexate tablets for a while and they made me very sick so I was then put on to injections.I took these every week for 18 months along with daily folic acid but I ended up in hospital with serious problems but that was an extreme scenario.and complications with another medical condition.Even during the 18 months I suffered the most awful side effects sickness,pain.migraines,stiffness.It used to floor me 2 days after the injection and would last forms couple of days.I used to,do my jab on a Thursday so I Would be ill on Saturday and Sunday.That was the only way I could manage to do my my job.
At that point all my RA meds were stopped for 5 months until my body recovered enough to be able to resume them.After 5 months I Couldn't resume them so all I have to treat my RA is steroids and painkillers.
Others on this site have said that they persevered with methotrexate and it's the best thing they ever had with brilliant results,so it's down to trial and error as to what suits you.You may want to carry on and see if the side effects improve or you should speak to your GP/ Rheumy if you have any concerns.
Thanks Crusee. I asked if I could switch to injections but they seemed reluctant but I'm not taking any more tablets. I've never been so sick and it's flooring me for the entire week
When I changed to injections they had to apply for funding before I had them which took a while and then delivery had to be arranged from Health at Home.
I can't remember whether the funding had to be arranged because my rheum us in England and I am in Wales or because they needed to apply anyway.
I can sympathise with you re the sickness I felt downright awful.I was sick all weekend and worked all week so no social life.I was either too tired or too sick,so I understand you wanting to change to injections.As it was I didn't get on with tablets or injections but the injections were possibly more tolerable than the tablets.But like I said different people,different meds,different reactions.
Me again.....until you find the right drug you have to grow a thick skin & stand your ground, I sometimes felt I might have overstepped the mark when I complained about Sulpasalazine ......but it got me moved on to Mtx which suited me.
So deep breath & try again....maybe your GP will be more receptive than your rheumy?
Never let them make you stay on meds that make you this ill. I was in the same situation as you and stayed on sulfa tabs for 6 months my GP told them to stop my blood pressure had fallen and I had bad palpatations and all your symptoms too. Hospitalized with stomach cramps etc. They then tried MTX I lasted 5 weeks with terrible pain and sickness again my GP said stop. I am now on a 12 week break from meds to try to help my body heal from damage caused. I am doing ok no tummy problems, heart or dizziness or sickness problems.
Sometimes we have to take control away from medics. we have to listen to our bodies.
I hope you soon start to feel better in yourself . big hugs
Hi Gretchy. Sorry to hear the meds are not agreeing with you. I started mtx and am on week 10, missing one week due to a biopsy. The first dose wiped me out and was advised to take it in the evening, that suits better. I did have diarrhoea for a few days, no sickness but very tired. This has improved over the weeks, my gp told me to take Imodium if needed. I preferred not to. I do note you were only taking folic acid once a week. I take it every day except mtx day. This is meant to stop the side effects, once in the system. It maybe better after taking the higher dose folic acid they have suggested. I am only on 10mg as also on Humira. I do hope you find a solution for you.
Time to see your GP, you don't need all this stress when you feel so unwell. How are your blood results doing, are you still having them fortnightly, they may show a problem. Sending you hugs.
Hi Gretchy, I am really sorry to hear you are having a tough time with MTX.
I say really sorry as in the early days I had a tough time too. I started on 10mg last Nov, then was told to increase my dose to 12.5mg after 2 weeks and once again to 15mg 2 weeks later.
It was when I hit 15mg that I began to have problems. I did not have stomach cramps like you or diarrhea but had what seems to be a common side effect, nausea.
The nausea went away once I started taking folic acid (5mg). But it was trial and error as it was not until I took folic acid every day other than MTX day that it went. This process took a few weeks. When I looked into it, the MTX is said not to be upsetting your stomach but actually switches the 'nausea button' in your brain on and the folic acid counteracts this.
It seems for many of us as others have said it takes time for the body to adjust to taking MTX.
Are you taking antacids? Don't know if this may help your stomach. However you must not take antacids within 4 hrs of taking MTX as this reduces its potency.
A common one to take which is on prescription is Lansoprazole.
Sorry to hear you're struggling with side effects Gretchy. I think you should push to be seen in clinic by your Rheumy nurse, you should have been given a helpline number. Whilst it can take a while to get used to MTX there are some things which may help. If you don't already you could try splitting the dose throughout the day with meals (I did this & it really helps), drink plenty of water, keep to bland foods the day you take it & ask if you'd be better increasing the days you take your folic acid. I'm on 17.5ml injections & take 5mg folic acid every day except MTX day. Some Rheumys do prefer that their patients wait & see if their side effects settle down the longer they take it but they're not the ones who's lives are being disrupted are they? If you're otherwise responding well I think I'd ask again about changing to injections, state your case & tell them just how it is.
You don't say who told you injections are the same price as tablets but just for the record they cost considerably more, though actually to the patient that's of no consequence, the prescription cost remains the same - 28 tablets cost £2.40 so a 15mg/wk dose costs near enough £2 a week whereas a 15ml prefilled injection costs £16.57 so 4 per prescription each month is £66.28
I can be sick taking an aspirin...Sulphasakazine to me was the pill from hell.But I took Mtx up to 20mg a week by taking it after my evening meal....then I found after a night's sleep & taking 5mg of Folic Acid 6 days a week I tolerated it for 7 years.
But if you've tried that I'd ask to change meds.......if you could get to see your GP or Rheumy nurse when you are really suffering they could put your situation to the prescribing doctor.....I'm sure just telling a doctor remotely doesn't get the same attention as seeing you looking like hell!
I do hope you very quickly find a drug that suits you....it's very much a case of trial & error....but once you find the right one all the probs you have now will be forgotten.
I had the same abdominal pain on M/x tablets, coupled with diarrhoea and no appetite. M/X stopped and started again in case it was a tummy bug or something else, but the same thing happened. Lost nearly 2 stone in a matter of weeks. Was changed by my lovely consultant and nurse to M/X Injections, no such trouble since, though I blame the stuff for any passing symptoms of tiredness etc I may have (better than putting it down to my age!).
YES! Same thing happened to me. However, my 2 ulcers did not start until 5 months of taking 4 tablets, once a week. I am now back on it, b ut giving myself an ijection. He gave me a HIGH dose though, so I am worried. The 10 mg tablets per week worked great. Now he has me at an injection of .6 ml, which I think works out to 15 mgs a week. Anyway, I had bad pain after a dose when I was on the tabs, but I put it down to other things, The following week, it was severe-I went to the ER. They did a cat scan, nothing showed. Doc suggested a colonoscopy, which I did. I switched off the MTX onto sulfasalazine while waiting to get the scope, as I knew MTX had something to do with it. Sure enough, the scope showed 2 small ulcers-I think it was in my upper intestines. Stayed on the Sulfa almost 10 months, but my RA is bad again, so he insisted I retry MTX. I had my 2nd shot Monday-and today (wed) I have that slight pain again in the middle right side of my gut, just over from the belly button about 4 inches or so. I did some research-ulcers are common. I also found if you take omeprazole, which is a PPI it increases MTX toxicity.I am now taking ranitidine, and they THINK it may stop that "toxic" effect, but they haven't done tests. I;ve had severe RA for almost 39 years...so, it's hard to figure out what to use that's safest. I will say, I got 17 wonderful years on Minocycline-a simple antibiotic. Check into that-read about it on The Road Back Foundation. I developed pericarditis (inflammation of heart sac) and they were concerned I might have developed drug induced lupus from minocycline. I am now doubting it, as I still have slight pericarditis, but have been off the Mino for 2 years. Just something to think about. Do your OWN research-learn about it-if you don't, those in charge of your health may kill you. They don't take time to understand what we are saying, and how well we know our own bodies. Best of luck to you all. I suggest to try Minocycline, pulse dosage of M W F- get the book "The new Arthritis Breakthrough " by Dr Thomas Brown & Henry Scammel. it might just change your life. I may try to get back on the minocycline again, and give it another try. It's a miracle drug fro sure, for many of us. (and I've been on them all except biologicals) Good luck to all with this terrible disease.
Gretchy, the member who wrote this post a year ago, isn't around regularly, it happens on forums sometimes when people are either doing well or getting on with things. I'm answering as she may not see your reply, I didn't want you to think she wasn't answering you. Just so you're aware methotrexate when administered by injection doesn't go through the stomach, it goes straight into the blood stream so maybe it's something else that's at issue & it was just coincidence you had pain to the right side? Something to discus with your team possibly. I think you're right & you may have your dose wrong, 0.6ml converts to 12mg, there is a 12.5mg pre filled pen so maybe this is it? It's a reasonably low dose though, we're prescribed anything up to 25mg or 30mg.
Along with many others here I'm coprescribed omeprazole, have been for the 8 years I've taken MTX with no problems & i,ve taken just 20mg a day but currently on 40mg with now change in renal function. I think it's probably a case of if it doesn't cause renal problems you're able to remain on it. That said there is potential need to withdraw it & if you already have ulcers you need to take extra care. Although ranitidine isn't as good at healing lesions it's certainly better than nothing.
Treatment may be slightly different here in the UK but I agree we need to educate ourselves about our condition, it helps there's no doubt about that but I'm not sure I would generalise the medical professionals I have treating me as you do. I'm sorry if your team don't take time with you, maybe you could seek out another Rheumy if you're not confident with your present one? It must be awful carrying that thought each time you see them, I think it would concern me too.
I hope things work out for you & you find the DMARD which works best for you.
i took the tablets 8 years ago and I was ill,8 weeks ago I was assured the injections were the way to go,i was told I would not get any of the pain in my stomache or cramps,they were wrong ive been ill for last 4 weeks sickness diariaah nausea ,I also have a stomache ulcer which this med is driving it mad,im calling hospital in morning to tell them I'm no longer going on with this treatment id rather have the flare ups then being sicl all the time ,I'm on 20mg a week
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