Methotrexate anyone?

Posted , 3 users are following.

So I've been flaring since May and after countless medications of trial I don't seem to respond to any or have some kind of reaction to them.

I'm now on Remicade and due for my 4th infusion at the end of September, have seen the consultant today and he thinks I should have responded by now or at least by the next infusion. I had an endoscopy last week and let's just say I was in shock as to how bad it looked. He has now suggested that I also try Methotrexate to see if this makes a difference. After this he says it's surgery! 😭

Has anyone had any experience with this medication, im quite worried about side effects as I've experienced this with mostly every medication I've taken?!

Medication tried and tested history

Prednisolone 40mg

Azathioprine 200mg

Mercaptopurine 100mg

Mercaptopurine 50mg Allopurinol 100mg every other day.

Clipper

Budesonide

Currently on;

Pentasa 4g

Remicade infusions

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9 Replies

  • Posted

    Hi Shal75

    Looks like you are on the hamster wheel with the meds I feel your pain was the same for 9 months .. If I knew then what I know now I would of had surgery earlier but it's only natural to exhaust all options before being operated on I was on most of the same medications apart from remicade just wanted to say if you do have to have surgery please try not to worry because it will give you your life back have you got uc or crohns? I had an illestomy 6 months after giving birth and have no regrets !! Any questions please ask and here to support 😉👍

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    • Posted

      Hi Rachelle, the consultant did say that I'm running out of options. He said if this medication and the remicade don't work then there is one more infusion I can try but it may be I will need to have surgery. I am scared of having yet more surgery (previous removal of colloid cyst in brain - twice! Both times I caught an infection, hence leaving me with Ulcerative Colitis )

      But your words are encouraging, how long was your recovery after? I guess I'm more scared about how easy/hard it will be for me to pass stools etc.

      Consultants don't really have the knowledge about how you feel and what we go through, so I'm glad you replied to share your experience. ?

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    • Posted

      Hi Shal75

      It sounds like you have had a rough time after your other operations and then to get UC my thoughts are with you..

      Well I was in hospital 16 days total recovery was fast out after 8 days after my op and driving and doing normal stuff by 5 weeks and had a 7 month old baby boy too.. It was easier to recover from the illestomy compared to my c section but I think that's because I was so ill my body found it so hard to recover after birth .. Anyway like you know surgery is tough and yes you get the bad days but it gets better as for going to the toilet it's different due to coming out of your Stoma into a bag but it's controlled where I was going 20/30 times per day I had no life as a new mum I was a prisoner in my own home for 9 months it was the worst time of my life apart from my beautiful baby and a very supportive husband and family it was a very dark and lonely place to be .. I had uc for 11 years but got a flare while 7 months pregnant and it didn't go until surgery for me my colon was so bad that no drug would of saved it I tried everything but in the end I knew it was the writing on the wall for me. I was so scared of the unknown and look it's not ideal but it saved my life and gave me back my old one and will have the j pouch and reversal in the near future.. As for docs it's hard as like you say they don't know what it's like to be that person but one thing I will say get yourself a good surgeon do your homework I can help if you need.. and all stomas are angels without them I don't know what I would of done.

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    • Posted

      The consultant said I would start with a bag and then they will do a J pouch. I guess it doesn't sound as bad as I had thought. Good to know it's bringing all your lives back and you dont have to stay within a foot step away from a toilet.

      I think I might give this a go and then by the time I have my next appointment if it hasn't worked (by then if it was going to I would know) I'll say about surgery.

      Thanks guys.

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    • Posted

      So it's not forever and life would be better than how it is now .. It's nice not to plan your life round a toilet!

      I hope the meds work but if not it's okay too as I said any support I'm happy to help this forum has helped me so much these are my faceless friends 😉😉👍

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  • Posted

    Just want to echo what rachelle52846 said, surgery isn't as bad as you think.

    Remicade didn't work for me neither did 9 months of steroids followed by 10days IV steroids plus other meds.

    I pushed for surgery and got it in March this year. Perm stoma and bag for life...but better than that I have my life back! Out running now, joined local running club and feeling so much better and to top it all of I have zero meds!

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    • Posted

      Such great news JonWhut glad you are doing well and living life how it should be.. Talking of running I went for a run the other day first time in 2 years felt great and swimming too 😉 Nice to do the normal stuff again hey !!

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    • Posted

      To right! Ben Nevis conquered in August...been running for several weeks and managed my first 10k tonight 👍 All of which I know I wouldn't have been able to do before my op, as 20+ trips to the toilet a day somewhat hindered everyday life 😀

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