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Crohn's Disease Forum » Treatment » Methotrexate » Next stop Methotrexate :(


07-26-2011, 08:39 PM   #1
jaggartini
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Next stop Methotrexate :(

Trying to get some views and experiences on Methotrexate. For those that are on it how have you found it?
Do you have to take it with any other medications?
Have you had any side effects?
Does your body eventually build a resistance to this drug & then you end up on an even stronger one?

I was put on Imuran a few months ago and had a severe allergic reaction to it. I'm now currently taking 4 Pentasa sachets daily and am on 2.5mg Prednisone for the next 3 weeks. I will then come off Pred and my GI said we'll see how I go BUT if I look like flaring again I will have to start Methotrexate. I end up on Prednisone every year so Methotrexate is to try and stop that from happening.

I don't like the sound of a drug they strongly advise not to be pregnant on. I have finished having babies, but if this drug is that toxic then what is it doing to my body (apart from helping my UC)

I'm terrified of having another reaction like I did with Imuran.

Thanks
G
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Ulcerative Colitis since 2004

Currently taking:
4 x 1g sachets Pentasa (every morning)
5mg x Prednisone
Probiotic Daily

Allergic Reaction to Imuran May 2011.
Reaction to Cyclosporin Nov 2011.
I've said no to Methotrexate as it sounds toxic and GI doesn't like using it.
Next stop may be surgery.

Had a major flare last Nov, hospitalised where I haemorrhaged. Ended up in ICU and blood transfusion.

.
07-26-2011, 10:42 PM   #2
Jennifer
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I haven't taken that drug in particular but I am on 6MP which also suppresses your immune system. I've never had a problem with it and never any side effects. Currently I'm not taking any other drugs with it but for a while I was. It depends on how well you're doing. I've been in remission for many years and have only been taking it solo for almost a year now. Most of the drugs prescribed for IBD have warnings about being pregnant and breast feeding and rightfully so (why give a medication to someone who's much smaller and doesn't even need the drug?). While on 6MP I have blood work done once a month to make sure it isn't affecting any of my organs in a negative way and I image you would have to have blood work for the same reason but I don't know how often unfortunately. I hope you don't have to start taking and that you'll be fine but if you do, I hope it works out for you.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
07-26-2011, 10:54 PM   #3
ThanksP
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Methotrexate is my last chance and I'm refusing to take it. I've tried Asacol, Apriso, 6MP (lowered my white cells too much), and Cimzia (a biologic like Remicade & Humira). I even tried to get into some drug trials but no luck. I am refusing Metho because six months ago my GI doc told me Metho wouldn't work and he didn't want to put me on it. Now, since everything has failed, he wants to try it. Nope, I'm not going to do it. Why would it magically work for me when 6 months ago he didn't want me on it? From what I have read, in the US, Methotrexate is kind of a last resort. I wasn't scared of the biologics but this one has me shaking my head east and west. It's not the warnings that scared me because Cimzia and the other biologics have equally frightening warnings. I dont want to take it because my GI is almost positive it won't work so why bother?

Have you looked into trying some of the biologics like Remi or Humira?
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07-27-2011, 02:06 AM   #4
jaggartini
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I can't take 6mp OR Remi as apparently it has similar agents as Imuran. if I had a reaction to Imuran my GI said that I'd most likely react on the others which I don't want to take that risk.

He mentioned Humira BUT in Australia it is hard to get. You have to be a Chrons sufferer for a start (and I'm UC) Who knows why this is the case. My last colonoscopy did show UC BUT my GI also suggested that I was leaning toward Chrons so who knows.
07-31-2011, 05:46 PM   #5
Sunfire
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I reacted to everything the doctor has given me with each reaction getting more severe. The last drug I was on (6 mp) put me in the hospital with pancreatitus. I am now on Methotrexate. I have been on it for almost 10 weeks and have a wicked headache the day I get the shot, but also on the flip side I am still flaring from Crohns. So I am not sure if this drug is working yet. Believe me I was petrified of taking Methotrexate but I finally decided that I have to put my trust in my doctor, that he knows what he is doing. If this does fail I was told my next stop is Remi so I am not sure why your doctor would say you couldn't take it because you reacted to Imuran.
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Have tried:
Pentasa (gave me severe migraines)
Entocort (stopped working after a month)
Prednisone (worked but nasty side effects and doc doesn't like me on it long term)
Imuran (developed pancreatitis)
6 MP (went into hospital with acute pancreatitis)

Now taking 25 mg of Methotrexate injection every week.....
08-01-2011, 02:57 AM   #6
silverlining
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I'm on Methotrexate (MTX). While going through this forum in the past, I've found that many people here seem to want to avoid MTX. Could someone fill me in on what's driving these feelings? I'm not saying that MTX is good or bad... so far it's been working for me (I take the oral form of it). And yes it's true that you shouldn't take it if you're pregnant or plan on being pregnant because of how it works. And like CrabbyRelish said, many IBD drugs having warnings about usage with pregnancy and such.

Right now, oral MTX is the only drug I'm taking. I've been on combinations of drugs before, but I've tapered it all down to just MTX. In terms of side effects, I take my meds once a week and I notice that on that day I tend to get a bit more 'crampier' but nothing too bad and definitely nothing compared to the pain that I had at my 'worst'. I've never heard anything about resistance to MTX...
Jaggartini, I'm curious, what was involved with your allergic reaction to imuran? I have heard that some people cannot tolerate Imuran, something about the enzyme involved with breaking it down. Perhaps this is your situation?
I was actually on Imuran before and it was working for me. The reason why my GI switched me onto MTX was because he said I'm still pretty young, and he doesn't like the associated long-term increased risks of certain cancers. And at this point in my life, I'm not thinking of pregnancy so MTX was an alternative for me.
08-01-2011, 05:09 AM   #7
jaggartini
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Me personally; I don't like the sound of MXT. My GI doesn't like using it and only has a few patients on it. It is a stronger drug, I don't know?
You can take Imuran whilst pg (not that I did) BUT have known many to have succesful pregnancies. MXT is a definite NO. That makes me feel it's stronger. They use it as an abortion drug and to be honest that is against my beliefs as well. I can't get my head around that I'd be taking a drug they use to abort a pregnancy. Maybe it's b/c I've had 4 healthy babies.

Silverlining I was put on Imuran to try and keep my UC at bay. Every year I flare due to the stress of my business I end up on Prednisone. Going on Imuran was to try and avoid being on Prednisone at some point each year as there are long term effects of doing so.
Imuran was taken orally (building up). 4 weeks after taking it I thought I had the flu; high temps, my body ached, loss of appetite and then my legs came out in a rash. They were tender to touch. 6 weeks later and the marks are only going. As I said previously I'm not allergic to anything so this was a shock for me. I rang my GI and he told me to go off it immediately, my liver function test was through the roof.

So, the drugs keep getting stronger right? and when my body becomes immune to that one I get put on a stronger one again. I don't see the stage I'm at all that great. I'm so apprehensive about it all. I guess I'm scared of reacting again as it was not a nice time for me and my young family. MY GI has said there are cancer risks for Imuran and MXT
08-01-2011, 07:08 AM   #8
beth
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I think you mean MTX... The drugs getting stronger thing is kinda true, there is certainly an element of increasing risk along with effectiveness. But you have a serious disease, with serious complications/etc, and it can sometimes need serious drugs to combat it. These diseases have no respect of peoples beliefs, when making a choice whether to take them or not you have to weigh up the mental and physical consequences of both paths.

I delayed taking azathioprine (Imuran in the States) and believe this allowed my Crohn's to take hold and cause peripheral damage. Now I just take the drugs the doc says I should and don't look back.

Chacun à son goût
08-03-2011, 06:30 AM   #9
peleburrows
 
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I'm on Methotrexate (MTX). While going through this forum in the past, I've found that many people here seem to want to avoid MTX. Could someone fill me in on what's driving these feelings?
Looking round these forums I am in the same boat really. The GI didn't seem particularly reluctant to put me on oral methotrexate and I had a 30 minute discussion with the specialist nurse about side effects such as nausea but they never gave me a reason to freak out. Although in saying that the pharmacist warned me about the toxicity of the drug.

I've been on it for 4/5 weeks and my inflammation has been creeping up according to the blood tests after being on a 6 week course of prednisolone. I feel particularly fatigued the day after I take it and I don't know if I'm having a little bit of balding or that is me just being a bit insecure and paranoid.

Similar to beth my arrogance delayed or disrupted treatment which hasn't helped in the long term......I'm much more open to their suggestions for treatment, after all they have the experience and medical training - but I do question and probe the reasons behind it so they have solid reasoning behind taking that course.
08-03-2011, 09:10 AM   #10
Raychaie
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Hey, I saw that your next stop is methotrexate, I'm 14 and I'm on 22.5mg every week, for about a year you will be fine, no side efects but after a year you will start to feel yucky the next day after taking your medication. I have been on methotrexate for 2 years now and every week I feel quite sick but I guess it's just a case of mind over matter, plus the sickness is a sign that the drug is working. Really there is nothing to be worried about! That is about the only side effect of this drug. I went through Clinical Psychology to help me gather my thoughts on this. I started out on the injection and about 1 year down the line I stopped because I thought it was all getting to much but after a long chat with the doctors they sent out a district nures to help me. Then about 2 moths later I went back to clinic and the said I could go on the tablets so now I'm on the tablets, feeling a little yucky every Saturday and I've not had a flare up in 2 years! So think posotive! Good luck!
08-03-2011, 05:13 PM   #11
jaggartini
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Join Date: May 2011
Location: AUSTRALIA
So what are the long term side effects? This concerns me as well.
08-04-2011, 07:06 AM   #12
Raychaie
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The long term side effects are feeling sick and having quite a bad immune system, I catch most things that go around these days, plus its recommended that you get an annual flu jag. Usually, if you ever need anti-biotics when you're on metha. They don't work as well, your healing process for cuts, wounds etc. will be a little longer. I had an operation on my foot and it took about 2 months to heal but at least I had no flare-ups!
08-04-2011, 09:30 AM   #13
peleburrows
 
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Just to make it clear on the antibiotics....I'm not sure if its certain types or for all antibiotics but they really don't mix well with methotrexate. Make sure you're not prescribed some by accident.
08-04-2011, 05:29 PM   #14
jaggartini
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Thanks for the tip on the antibiotics. My GI is actually very cautious using them as is my GP as they think some of them may stir my UC so I don't take them unless absolutely necessary.
08-08-2011, 07:43 PM   #15
appleve
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I've been on Methotrexate for at least 6 months now and it hasn't done a thing. The doctor said that most of the awful side effects are minimized or eliminated if you take folic acid (a lot of it) which I have been doing. I started Humira today, hoping they will get rid of the Methotrexate b/c I would like to have a family soon.
09-10-2011, 11:06 PM   #16
Aura
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[QUOTE=jaggartini;323006]Trying to get some views and experiences on Methotrexate. For those that are on it how have you found it?
Do you have to take it with any other medications?
Have you had any side effects?
Does your body eventually build a resistance to this drug & then you end up on an even stronger one?]

Hi there, I take mthx as well as all my other meds. But no more meds for crohns just mthx. I have a weekly injection on a Friday afternoon which I do myself. The hospital gave me a training session. The side effects are that I am tired the next day, so I have a quiet Saturday. I get nausea before I inject but that is the thought of injecting a toxic drug in my body. But I reward myself. When I was on 25ml I had more side effects, and the tiredness was greater. Now I am on a maintenence dose of 15. I am mindful of getting infections or the flu so I am a bit cautious there. But in saying that I work in early childhood and I lecturer students so I do have some exposure to bugs. I have been on this for over a year now, maybe even a year and a half. My crohns is undercontrol so that is good.
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Aura
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Meds: 2.5mg Plendil ER. Azathioprine 100mg; Inhibace+ 12.5mg; gastrosoothe 60mg; Simvastatin 40mg; Loratadine 20mg; Fluoxetine 40mg; Provera 10mg; Metformin 2.55g; Cal d forte; 1.25mg, Humira; Panadol 4g; Pred 3mg
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