methotrexate users past and present

going to my GI next week and last visit he warned me my steroid dependency needs to end and he wants me to try methotrexate

if you are on it or have been on it can you tell me:

- oral or injection 

- dosage that got you to / kept you in remission

- initial side effects

- ongoing side effects

- reasons for stopping

- overall impact good/bad

I am in a good remission phase after a rough couple of years (well decades actually <grin>) but my entocort runs out next week and I have to start thinking about medication again.

all comments greatly appreciated

Lesley in NZ

 

I have been on MTX for 2 1/2 months now ( I have had 10 injections so far). More than 3 months ago, I started MTX tablets but could not tolerate it. So. after 3 weeks, I saw my doc an he switched me to the injectable form. It is much better, once per week and not 3 times on one day. I am a GERD patient, so nausea and vomiting are my main complaints. I combat this by taking a Zofran injection 30 mins earlier before the MTX dose. This has to be repeated 24 hrs later. By day 3 of the injection, things would become normal and you would resume your activities normally.

I was put on 25 mg im injection/week. I read studies that mentioned that in order to get into remission (which I have never been in yet), an IBDer requires to be injected 25 mg/week for 10 months. MTX needs from 3 - 6 months to kick in. As for maintenance, the dose required is 15mg/week.

The main problem that you have to discuss with your doc before starting this med is prescribing you folic acid supplements other than the ones you take in a multivitamin. At the beginning of my treatment, I used to suffer from very painful mouth ulcers to the extent that I could not eat. Many fellow Crohnies at this forum advised me to take folic acid supplements and this helped a lot. I talked to my doc and he prescribed me 2mg folic acid /day along with the multivitamin. On some websites, it is mentioned that one needs from 1 - 5 mg of folic acid supplements as MTX wroks on destroying folate to function well.
A piece of advice, try always to take your folic acid regularly as I missed a couple of doses last week (coz of gastritis) and the mouth ulcers returned severer.

As HappyHeadBrokenBottom has mentioned, fatigue is another problem that I could somehow solve by taking B shots and relaxing the day next to the injection. I take it on weekends as they day after I'm like a Zombie and cannot get out of bed.

Overall, I can say that I feel good though I'm in constant flare ups ( I mean I do not faint and collapse a lot as I used to do in the past. My body can tolerate persistent D and I am not rushed to ER coz of low blood pressure). I was initially put on this med as I have been on pred for more than a year and a half now and can't wean it off. I'm waiting till MTX kicks in, so I consider myself that I'm not fully covered since pred is a very low dose (7.5 mg) and MTX hasn't started any effect yet. I'll start entocort next week.

Wishing you the best of luck with MTX:)
Take care!

Iv been on it for a few years now . Dosage , 4 pills once per week . side effects , none that i see. I am on it so I tolerate remicade longer and hopefully that works out for me .

Been taking MtX before for severel years for my psoriasisartritis. At the beginning oral pills 4/weak and after some years turned over to injections because my joints didn´t respond and I got nausea from the pills but then I´ve been eating it for some years. Initial I didn´t have any sideeffects but as I mentioned I got nauseas really nauseus. It held on for round about two-three days and then when half the weak had gone I started thinking about it soon being time again and got angst about it. So we tried injections insted but it didn´t help. Another sideeffect was that I got irritated on everyone and everything I couldn´t even endure hearing my neighbours laughing on their terrace It wasn´t like me at all.

But I took it for some years before those sideeffects started.

I hope you´ll be more like sniper insted.

Good luck!

I was on weekly injections for about 4 or 5 months. just had to stopped recently due to gout flare which we knew might happen. I am having another scope in early Dec some we will be able to see if it made any difference. I can say that my pains has been reduced, but I still have the same amount of BM's every day. so not sure if it helped. My GI is not really sold on this and it would only be for no more than 1 year. I can say that injections were easy, but i am was not sure if this is working or not.

no side effects except setting off a gout attack. but as I said We knew that was a strong possibility. good luck

Thanks everyone - big help getting some idea before I sit down with the specialist next week :)

thanks for that excellent advice mirowpl - really most appreciated as I have to admit I am not that keen on needles but am always amazed at how quickly we get used to things we don't really like that much :)

thanks MC - both my mother and sister have heart issues so if it happended to me I would think 'genetic 'not 'med induced' so this is a very handy thng to know :)

thanks sooper - how frustrating to have it work for a friend and not for you ;P

I was put on mtx injections. 12.5 mg every week. Started in September.

2 weeks ago I developed severe mouth/throat sores and my GI took me off of mtx for 2 weeks and bumped up my folic acid from 1 mg to 4 mg.

My GI thinks its a reaction to the med but we are going to give it another go but leave the folic acid at 4 mg. I still wonder if its crohns sores in my mouth but I guess my GI would know what they look like.  Plus I have odd reactions to meds all the time including serum sickness reaction and anaphlaxsis so who knows whats really causing it.

MTX works wonders for my joint pain! Can't wait to try it again.