Methotrexate and symptoms

[Shelley04]

When u started mtx 4 weeks ago the side effects weren't too bad. Slight stomach cramp and a little nausea. 2nd week the same. I thought this isn't so bad if it's gonna help I can put up with this! 3rd week cramping and stomach pain for approx 3 days. This week my 4th dose is horrendous. Stomach cramps with I have to take meds for hot water bottles etc. constant nausea and diarrhoea I am so fed up. Has anyone else who can't tolerate mtx found that the side effects worsen as the weeks go on please? Should I persevere? on holiday next week and not going to take my dose. Will ring rheumy nurse Monday to confirm it's ok.

Thanks in advance for reading

[Beaches2]

Hi Shelley

Sorry to hear you are having some nasty side effects. Have you had an increase in dose? Do you have Folic acid to take?

I found I felt sickly and generally yucky for at least 2 - 3 days after, I started on 2 weeks of lower dose then up to 20, the increase did increase the nausea and rheumy nurse put up dose of Folic to 3 x per week. I take it 24 hours before, 24 hours after mtx and 1 dose in between......it has helped. Now up to 25 mtx and rheumy said rather than increase Folic they would give me anti sickness pills if I needed them, haven't needed them, I've been fine. Think it took about a month for me to get used to mtx.

Yes call your nurse re problems, they are usually very keen to help you continue with mtx even if it means getting back to it after your hols.

Some people change to injectable mtx if they can't tolerate side effects so that may be another option for you? X

[Shadows-walker]

Hi I could not tolerate it made me feel worse from day one even with folic acid my hair fell out as well , ,I could not tolorate sulphasalazine either , ask about hydrocholoquinne it's wonderful it gave me my life back to a point ,I am not on it at the moment as I felt so well on it that I think I over did it ,I have UCTD ,sjorgrens ,fibro , raynaulds ,reactive artherist ,and ME .hope you get some answers take care my rhummie told me not to suffer more than I have to if it's not working and making you feel worse than you already do tell them don't suffer in silence take care Chris

[Hidden in reply to Shadows-walker]

That's a great reply that I can identify with shadowswalker! I too seem doomed with DMARDs although they do work on my RD. Hydroxichloraquine was the best for me too but it made my face swell and itch to the point where even my mouth was swelling up.

Apart from Sulfa I've been fine initially on all these drugs but as they accumulate in my system the side effects start rolling in. I'm on injections - only 12.5 just now and I'm taking a few weeks off again now because of stomach cramps and not being well at either end for 24 hours and a truly disgusting taste 24/7. My rheumy has managed to convince me to go back on it several times now so altogether I've taken it for two and a half years including several breaks.

What I have found is that when I'm off MTX or Hydroxy the RD comes back in one form or another but when on it the side effects can vary in intensity from week to week. Some weeks I'll just be very tired and a little nauseous where others, such as this week just past, I'll be unable to function for sickness, the trots with tummy cramps, chills, foul taste and exhaustion. I know it can work the other way round for many and if you can weather the side effects until your body adjusts then that's good because it is a very effective drug for many of us. If you can I would give it 3-6 months. I've only come off these drugs when things have become serious or unbearable over three or four weeks - or when my doctors have said I have to.

It may be worth trying immodium and definitely worth trying switching to injections and extra folic acid if your rheumy suggests these.

[jackiestu in reply to Hidden]

Just seen your post re MTX and chills as a side effect, I have been on MTX for the last eighteen months but recently had chest infection given antibiotics but told to keep taking the MTX after two courses of antibiotics and feeling no better I rang the rummy helpline and was told I should not have been taking the MTX whilst on antibiotics and that it was no wonder I hadn't improved .

Anyway I'm now over the chest infection but keep getting chills and feeling really cold whilst hubby is telling me it's quite warm in the house but I'm covering myself a blanket especially during the evening, also just started to get mouth ulcer have never had one before so presume it's the MTX but don't know why these side effects are happening now after all this time.

[Hidden in reply to jackiestu]

I think the MTX works by accumulating in our system - but as it accumulates it also causes side effects which change over time. Personally I've had enough of side effects after over two years of waiting for GI ones and horrible taste to pass but that's just me I'm pathetic with all drugs! However the chills are still affecting me despite being off it now so I think for me this is the Raynauds part of my RD/ autoimmunity and I can't blame MTX. I even find it hard going round supermarkets these days because of the chill cabinets!

Take care,

Twitchy x

[magglen]

I also had stomach cramps on Methotrexate even when I lowered the dose. My consultant put me on something else. There are plenty of medications out there which, hopefully,will suit you better. So don't put up with the discomfort any longer xx

[Shelley04]

Thank you everyone. I take my dose on Thursday night and I am still suffering today. I am losing 3 days out of the week. Hot water bottles and busospan are my best friends at the moment. Can't eat as it makes it worse. And my joints still hurt! I'm not taking next Thursdays dose whilst on holiday. But will be ringing rheumy nurse tomorrow. really hoped I could tolerate mtx but doesn't appear that way

[nomoreheels in reply to Shelley04]

I don't know if your Rheumy would sanction this & my guess is he'd want you to persevere longer on the tablets but it's not him experiencing the horrible problems you are at the moment is it? You don't say how you take them but to help with side effects when on tablets I took (for 15mg) 2 with breakfast, 2 with lunch & 2 with dinner. Some people prefer to take them just before bed or split the dose over two days but that wouldn't help with the next couple of days of feeling rubbish. May be worth asking if you can try injections as taking it that way MTX bypasses your tum & should vastly reduce or at least lessen the experiences you having are at present. One thing to bear in mind is it's early days & it can take anything up to 12 weeks before you notice a difference even though it's working on your RD so as I say your Rheumy may wish you to continue on it till past the time when it should be having an effect, your bloods will help determine that. You don't say how many folic acid you take but if it's only a couple of days maybe ask your Rheumy nurse if it could be upped to longer. I inject 15ml & take 5mg every day except MTX day & have coped well for the past nearly 4 years.

[Shelley04]

Thanks nomoreheels I take 10mg late in evening and first 2 weeks were fine. A little cramping within half hour of taking it but nothing next morning. Same with 2nd week. 3rd week cramping for 3 days loss of appetite and nausea. 4th week same as 3rd but diarrhoea as well. I take as advised 5 mg folic acid 3 days after mtx. Hopefully will discuss the symptoms with nurse tomorrow. When I saw consultant 4 weeks ago I did ask if I can delay starting til after my hols but he said he'd rather I didn't. I was diagnosed before Christmas and didn't start sulfasalazine til new year. They waited til June to put me on mtx so I'm kinda thinking one week missed won't hurt. I am going to persevere and contiue to take it but I don't want to be poorly on my holidays

[nomoreheels in reply to Shelley04]

I appreciate your concerns about your hols but conversely can see where your Rheumy's thinking lies. He has your best interests at heart by hitting your RD with MTX. He's introduced it a relatively low dose but in saying that it doesn't mean it's not starting to work. I think at this stage it would be wise to follow his advice, you don't want to be seen as a problem patient, equally he needs to understand you do need some help through this phase. I've been there even though I was on 15mg when starting on it but know exactly what it's like & it's a miserable time. Once you've been on it a while & things by then will hopefully have settled it's possible to halt it for a week or maybe two but at this stage in your treatment I would ask if there is anything he could prescribe either by upping the days you take folic acid or by adding an antiemetic (anti sickness pill) & even ask what would be best to take for your diarrhoea to tide you over this time, particularly your hols. Ask your Rheumy nurse just as you've asked us as you're seeing her tomorrow, she may be a little more sympathetic & have a cunning plan!

Hope that turns into a soon with a little help & let us know what happens tomorrow.

[Shelley04]

Well I flew out to turkey yesterday after ringing and leaving message for rheumy nurse yesterday. She rang me today and told me it was absolutely ok to miss 2 weeks if I was away for 2 weeks. I'm only away for one so will get back on it next week. She also told me to take folic acid everyday except for day before and day after mtx and off course the day of to try and help with the symptoms. Have follow up appointment in 4 to 5 weeks so will be able to discuss the way it makes me feel then. The warm weather, being in the warm pools and the steroid injections I had a week ago are making me feel better than I have done in quite sometime

[nomoreheels in reply to Shelley04]

That's good news. Have a lovely week & enjoy relaxing in the warm water, it'll do you the world of good.. Be careful with the sun though, you know we've to be careful when on MTX!

[cris1728]

Hi Shelley, Hope you are having a good holiday, I take 20 mg mthx and have done for a year had similar problem with nausea but not the cramps and diarrhoea. I take folic acid 6 days a week and recently ran out so missed 3 days before my mthx and had awful bloating cramps and diarrhoea the day after taking mthx that week but since then do not have any problems, hopefully increasing the folic acid will help

crisxx

[Shelley04]

Thank you nomoreheels I was being careful and using extra sun cream but sadly I still burnt a little more than I normally would. I did Oviedo the first day and have been feeling worn out since. Thank you cris I hope that will work with me too