Bowel Problems with RA anyone!!

[Nurse12]

Hi I am new to this site having just moved back from the USA I have RA and I saw my Nurse Practitioner today and she has changed me from Methotrexate pills to injections because I am having terrible bowel problems, anyone else suffering from this. My scans were clear and so was my colonoscopy

[nomoreheels]

Hiya Nurse12 & welcome home! Unfortunately MTX being the type of DMARD it is it can cause upsets, they're common side effects along with nausea. There are ways to manage it, one being a change to injections which you already know, but another is an increase in folic acid, that is if you're on fewer than 5mg 6 days a week. You don't say how long you've been on MTX but often such side effects settle the longer you take, or inject, it.

Other options are antidiarrhoeals or antimotility meds such as loperamide (Imodium) or codeine phosphate. The latter often causes the opposite problem in those who don't have diarrhoea, bungs you up!

Hopefully it'll just simply be the change to injections which helps ease your symptoms & they go given a little time for adjustment. You never know you may even be able to go down a dose, it's sometimes the case as because injections go straight into the bloodstream the MTX is more effective. I've been on MTX 10 years, 9 of them by injection & changed doses quite a few times, most recently I'm coming down from 20mg to 17.5mg.

I hope you find it helpful being here.

[Mmrr]

Welcome.

Yes I had gut problems with MTX, and had to eventually give up on it. Injecting MTX helped settle things for a while, but the pains and diarrhoea came back. Folic acid 6 days a week didn't make a lot of difference to me.

Some people find things settle after a while so it is worth staying with it for a bit (but not too long).

I hope things settle for you.

[Sunnyspells]

When I started methotrexate I had some bowel issues, not all helped by switching to the injections, and found actually it was the folic acid tablets that upset me! The more I took thinking they would help, the worse I got! After some research I have swithed to Folate capsules, which I have to buy for myself, but they are not too expensive, and have definitely calmed my stomach down a bit.

[barbieg in reply to Sunnyspells]

That’s really interesting as I’m suffering bowel problems , but even worse for me is the “wind!” I was taking folic acid 6 times a week even though I am lucky so far and don’t suffer nausea. I looked at the leaflet for the folic acid and it mentions “wind” so I’ve cut back to three days after Methotrexate and it’s easing off. Will see how I fair next week before getting in touch with my consultant. Will have to look up Folate capsules.

[Sunnyspells in reply to barbieg]

Hope it helps! I had wind, and was "going" four or five times a day. I only take two folate capsules a week now

[barbieg in reply to Sunnyspells]

How did you know about Folate capsules?

[Sunnyspells in reply to barbieg]

My son lives in the USA and when I was prescribed folic acid he told me that lots of Americans won't take it, but take folate instead as it's gentler on the body.

[barbieg in reply to Sunnyspells]

That’s interesting. I’m certainly feeling better for not taking it this week. I will take it tomorrow and see how I feel. Might just get the folate though.

[Joang]

Hi, I had exactly the same problems and the problem improved with the injections. It was explained to me that I probably wasn't getting the benefit of the MTX as it was passing straight through me. Stick with the injections and I'm sure you will see an improvement

[Nurse12]

I appear to be having the opposite of everyone, I am unable to go to the bathroom, my bowel doesn't seem to have any tone, I need to go but can't and I am not constipated. It's like I have a lazy bowel

[charisma in reply to Nurse12]

That is exactly what MTX did to me. I had to resort to dulcoease. And now even prednisolone has the same effect on the poor bowel. Leflunomide was better for me.

I too lived in the USA, just a few years, and returned to live here late in 2015 when I also was finally diagnosed with RA. Welcome home!

[Nurse12 in reply to charisma]

Thank you Charisma, I went to the docs again this a.m and he has given me a course of antibiotics, but he feels it won't work. I go back in 1 month if no better he is referring me to gastro. I wait with anticipation

[charisma in reply to Nurse12]

I will be interested to know; my poor bowel is fine when no harsh meds are taken. The return to normal is such a relief (pardon the pun lol)!

[Ninaseven]

I also had terrible bowel problems on the methotrexate pills. I actually diverticulitis three times. I’m now on Humira. The doc said no connection but I’m not fully convinced. Good luck.

[mickeysmom34472 in reply to Ninaseven]

I have RA and I was on mtx for about a year and a half. Worked wonderful til I had a perforated intestine. I also have diverticultis. I go to the bathroom 4-6 times a day sometimes and am living on lapirimide to slow it down. Would love to go on Humira but here in the states its about $5000 a month and that is with insurance

[lornaisobel]

Ive got dreadful awful embarrassing wind !!!!!!!!!!!!!!!!!!!! does anyone else have this - im injecting MTX and folic acid 6 days a week

[Nurse12 in reply to lornaisobel]

nowind (thank goodness) just no bowel tone its bizarre

[Hidden]

Hi Nurse12, I am like you and am unable to go for a bowel movement very often, on average it is about once in every three or four days. I get very uncomfortable and often spend a long time sitting on the loo and feeling all "bunged up." I also have terrible wind and pass it over and over again mostly very loud and long and this makes me almost frightened to mix with people.

I have been on Mtx for over six years now and my symptoms have got much worse over the time I have been on it. An example is the way I am loosing a lot of hair and every time I wash my hair there is quite a lot of it falling out. I don't feel that Mtx has helped me at all, but when I mention having a change of medication my rheumatologist always fobs me off and says I am doing well on it. I once said that I had failed on it and she remarked that she didn't agree that I had failed on it. This is despite the fact that in the six years I have been taking it, my RA and other health related conditions have got much worse.

When I was first put on it, I was in pain, but was still able to go out for short walks, get on a bus and go into town and carry back small amounts of shopping. However, now, I can only walk a few yards and have to be in a wheelchair or on a mobility scooter and can't even carry my own handbag, let alone any shopping and the pain I am in is so much worse that it was six years ago. We have had to have a stair lift installed this year and I have to use a lift to get in and out of the bath. My fingers are now all bent and some of them are swollen and my toes also swell up sometimes. This all seems unacceptable to me and yet I just cannot get her to try me onto another type of medication. I just feel I am getting nowhere and it is getting me down now.

[JFlay in reply to Hidden]

Hi, do you write things down for your rheumy appointments? I've started to do this e.g symptoms, difficulties, possible side effects of meds etc. I took a full A4 list with me last time, helped me remember and not miss anything. I felt she took more notice as it was written down. Also, does/could someone go with you to back you up? Sorry if you've already tried these! 😕

[Nurse12 in reply to Hidden]

Hi I think and my GP thinks it is the Methotrexate that is causing it, but the rheumatologist disagrees

[Hidden]

Hi JFlay,

Yes I have taken a list of things along with me but she always says she doesn't like reading from a list and for me to tell her in my own words. She listens but it doesn't seem to make any difference to anything. Mind you, I had a worse one sometime back. I took along a typed list of just four questions and she pushed it aside and said she didn't have time to look at it. She even wrote in the letter to my GP that I had taken along a list of questions but she hadn't had the time to look at them. My GP thought that was awful.

I always take my husband along with me, but he doesn't say anything much, but I think I am going to ask him to back me up more next time.

[achyknitter in reply to Hidden]

Hi Holly-Willow,

I had difficulty with a RA nurse who insisted that I was doing well when I was living in a lot of pain. After several appointments of not getting any help, I took my husband with me who sat quietly and wrote notes of everything that was said. After a while she commented on this and my next appointment was surprisingly with another nurse, who was a lot more helpful.

[kikolee]

Good morning..I did have problems with metx about 10 years ago..terrible lower g.i. Pain, etc. Had to have surgery, switched to rutuxin biologic. Best thing so far. Mtx.....awful for me..but anyone reading this , remember everyone is different!!

[joseppie]

Hi Nurse12..sorry to hear RA meds are messing with your gut! My experience may scare you but I wish I could have seen the my future after RA meds. I only take Prednisone now (RA for nearly 35yrs). I tried and failed all RA meds prescribed for 15 years always because it severely affected my gut. I finally lost my colon and 15 years later I now still have RA of course and a permanent ileostomy. RA is autoimmune and eventually diagnosed with ulcerative colitis; also autoimmune. RA is bad; colon issues are as bad or worse. I would have tried to stay away from RA meds if I had known where it was leading. Pain is difficult but having an ileostomy is an unbelievable life sentence. Best wishes in your journey.