Needing bathroom far to often

Hi all,

Wonder if I can please get some feedback I have been taking Prenisolone 10 mg daily - Methotrexate 20 mg once a week - folic tablet 48 hrs after - and Hydroxychloroquine 200mg twice daily - this is end of my second week after diagnosis 😬 I am suffering bad stomach cramps and on the toilet far to often 😬 Is this normal? Also sometimes I feel like my head is not with me 😳 Any advice would be gratefully received ❤️😘

17 Replies

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  • Quite a hefty initial dose of methotrexate (MTX). Do you have a helpline to give you support and advice? Or a good GP?

    I didn't accept the suggestion of having so many drugs all at once and so didn't have these problems. Started with hydroxy chloroquine (HCQ) and added in MTX later and wasn't offered oral steroids, but had had a couple of steroid injections whilst settling in with the HCQ and before starting MTX.

    Different consultants have different favourite regimes. Mine wanted me to have 3 DMARDs (disease modifying anti-rheumatic drugs) all at once, and I refused...much to his annoyance. But I had a pretty good idea that my body wouldn't have tolerated this approach. You will find what suits you...but it will be trial and error. Don't despair!

  • I be have had a blood test and get results onThursday! But if these cramps carry on I will be calling Rhuemy on Monday. Thank you for your reply x

  • Could you have an infection - either stomach one from food or a bladder infection? Yes the drugs can cause weird side effects, but also think whether could be something else just in case.

    The drug that gave me dreadful stomach side effects was sulphasalazine - but luckily only lasted a couple of months. I had no problem with MTX or Hydroxy (I take all 3 now), but we each react differently.

  • Thank you for your input helixhelix.

    I a feeling a bit better now - keep getting brain fog feeling on and off not every day thankfully. I will persevere X after all it's the only choice we have 👍 I had a grandmother wheelchair bound and an Au not with awful deformities - hopefully with the perseverance of the drugs we are all taking this won't happen to us 👯👯

  • Hi. Even thought I am an old timer with RA and on a lot of drugs, I have only just gone on MTX as Azathoprine was stopped after 31 years. I took my 3rd dose on Thursday evening 10mg and have been having an upset stomach since then. I take folic acid 6 days a week not Mtx day, but forgot this week and took in the morning so left it off Friday. With regard to dose one and two I just had diarrhoea the next day for a short while. This is a very toxic drug, together with the others your body may have to adjust. Just make sure you keep the helpline informed. Good luck and best wishes.

  • You probably need to increase your Folic acid to 6 days a week, I suffered from headaches for about 5 days after my Methotrexate dose. The increase of Folic acid helped and they changed me to injections instead. It might take a little while for your body to get used to the drugs but if it continues I would consult your rheumatology nurse. Ruth

  • That's what happened when I took hydroxychloroquine....

  • I am sure its the meds. I have been in similar situation . They have stopped my meds and six weeks on no diarrhorea head clear even my tinnitus calmer. You need to let nurses know Now.

  • In my opinion the methotrexate is far too high dose.it needs to be built up from small dose and your blood monitored to see how your body responds .At that high dose it was affecting my liver.All consultants have different ideas thou.hope you are feeling a lot better soon

  • 200 mg HCQ twice a day is 400 mg, a regular dose.

  • No, 200 mg twice daily is 400 mg (twice a day or take every 12 hours). Twice daily relates to the amount of times the dose is taken not twice of the tablet dose itself.

    2 x 200 mg twice daily is 800 mg. The Patient Information Leaflet lists diarrhoea as a common side effect. If she doesn't have a Rheumy helpline she can always ask the Pharmacist at the chemist where her scripts are filled.

    In her first post Doughnut informed us she is taking "Hydroxychloroquine sulfate 400mg daily".

  • I was attempting to address that you had misunderstood. We'll have to agree to disagree though the directions on my meds are to take either once or twice whatever the tablet dose is, it's common practice. Generally with side effect(s) it's recommended that you report them to your doctor, nurse or pharmacist, even if it's not listed in the PIL. You can also report side effects directly via the Yellow Card Scheme at: mhra.gov.uk/yellowcard, according to the PIL for HCQ.

  • That's why she's asked the question, it's all new to her & she was asking for help. It's not unusual to start treatment on multiple drugs, particularly when, as she's been, diagnosed with an aggressive form.

  • Hiya Doughnut. My thoughts are it's quite a normal initial reaction (though unwanted!) & your body needing to get used to the meds, particularly having taken them just a fortnight. I had the same with HCQ when I started it, MTX too though I started on 15 mg & as already has been said it does seem a strong dose to start on. If you're slight (of frame) your HCQ dose may be high too, though your Rheumy will have his/her reasons for your doses I'm sure. What may ease your symptoms a little is spreading the doses during the day & after meals. I took 400 mg HCQ as 1 in the morning & 1 in the evening & my 15 mg MTX as 2 with breakfast, 2 with lunch 2 with dinner & my tum settled pretty quickly. I took my folic acid the day before & the day after MTX, though now take it 6 days as recommended by my Rheumy.

    I'd still call your Rheumy nurse just so it's recorded & she may have more helpful tips for you, maybe increasing your folic acid. It's a horrible feeling so I hope it doesn't last too long for you. As you're tum's upset do remember to keep well hydrated, that can help with the MTX too :)

  • Hydroxy is the toilet's best friend. It took a couple of months before I was able to leave my home without fear of not finding a bathroom fast enough.

    In time your body will get used to the hydroxy and everything will calm down. In fact my hubby was afraid of taking hydroxy when he was diagnosed because of what he saw me go through.

  • Thanks to all for replying X I am sorry if I confused you with the dose of (HCQ) I take 200 mg with breakfast and 200mg with dinner. I apologise for not coming across clearer ☹️ But I really appreciate all the feedback 👍😘

  • I started on 15mg MTX when I was diagnosed this Feb as well as HCQ and decreasing doses of steroids. Tolerated them all well and inflammation, which had been very high, was not noticeable at my July consultant appointment. However she told me to inc MTX to 17.5mg for one week and then up to 20mg from then on. After about a week on 20mg I began suffering from a gripey stomach, nausea and headaches. Strangely at first I was convinced it was just a 'bug' and didn't connect it to the increased dose.It was only when I went to my GP some weeks later, suspecting a urine infection - which I didn't have- that I made the link between the symptoms and the inc in MTX dose. Cut down to 17.5mg at once and felt better almost immediately. I have been in contact with my rheum nurse who has told me to remain on 17.5 until next cons app in October, although I was willing to give 20mg another go. The advice above about spreading the MTX dose over the day sounds like a good idea so may give that a go if my dose is increased.

    Have only just discovered this brilliant forum btw and have already found it really useful. Thanks guys!👍

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