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11-22-2011, 04:43 AM   #1
jaggartini
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Methotrexate

I have a few questions re. MXT as I have to seriously weigh up the pros and cons of this or surgery.

My GI isn't keen to put me on it as he doesn't like the drug BUT he's happy to give it a go if that's what I choose. Running out of options here.

* Side effects, is there anyone out there that hasn't had ANY side effects at all or am I to expect a few.

* can you drink alcohol on it? (I'm a social person and like a glass of wine)

* Does it start as tablet form or is it injection only?

* Anything else I should be considering re. this drug?

Thanks heaps
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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.

.
11-22-2011, 08:40 AM   #2
KayleighMeek
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Hi

I am currently on methotrexate I have been for a couple of months now I had a few side effects but nothing to bad just some nausea and heartburn but I have increased m folic acid which seems to have sorted it out. Its not advised to drink on methotrexate but I have had a glass and it hasnt had any affects, apart from upsetting my stomach which it always does anyway.
I am on tablets at the moment I take 25mg once a week but I was told by my doctor if the tablets don't seem to work I could try the injections.
I really didn't want to go on methotrexate but it's not as bad as I imagined, I dont know how much of a difference it is making at the moment as I'm on a high dose of steroids so I still have to wait and see if it is working. I'm in a similar situation to you I am trying this and if it doesn't work I will most likely have to have surgery that's what the GI is leaning towards.

Good luck with whatever you decide to do and hope it works for you x
11-22-2011, 09:11 AM   #3
PsychoJane
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hey Jaggar,
You have a past that sounds like mine from I can read... I don't know much about the methotrexate yet. I received my syringe two days ago and I'm still on the "trying to convince myself to shoot it". As far as I know, you can have a drink once in a while when you take it. It's important to be very cautious about it though, methotrexate is a drug that can affect the liver from its toxicity and moderation(and even more) is the key. My doctor told me I could take some here and there but by a matter of safety, I guess i'll avoid it as much as I can... As Kayleigh mentionned it comes either in tablets or injections. When the disease is active they prefer sticking to the injection as the absorption may be affected by the improper assimilation.

I find it odd that they want to try that now in your therapy, but I for sure am not doctor, they know better than I do. From what I read, it seems like you are having a fulminant crohn flare... My first (I'm only at my second) flare was only colon involvement, they were convinced it was UC. I bleed myself to the point I had to receive 10 blood transfusions during the time I was hospitalized... I had a really bad reaction and did not respond to cyclosporin. As much as I hated the idea at first, the surgery really saved me and gave me a really improved quality of life. I've been having a normal life, away from the crazyness of CD for 10 years... I started having issues again 2 years ago... and it is still going, and if I was given the option of surgery (which I am not) I would take it right away. Just for the peace of mind that come with the fact you have less stress, less meds and what I consider a better quality of life afterwards.
Yes, today I have a bag, but I don't have to run for a bathroom every 2 seconds. I don't have the pain of a bloated colon either, and the more important, I wasn't sick for a while...
I hope it takes a positive turn soon. Good luck
~J~
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Diagnosed UC 1999 then refractory CD.
Past Meds: Prednisone, asacol, cyclosporine, cyclophosphamide, mp6, Humira

Currently taking: Omega-3, D-3, med-free for the time being.
~~Oh! n sorry if what I write seems strange at times, English is not my main language!~~

You'd like to chat and feel facebook would ease this point,
send me a private message and i'll do so =)

Last edited by PsychoJane; 11-22-2011 at 09:59 AM.
11-22-2011, 12:56 PM   #4
KWalker
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I did methotrexate. When I first started, they gave it to me in pill form. It was the worst thing I've ever done, and the doctor told me not to expect much better than that. He told me to take it on Saturday morning, and not to make plans for the rest of the weekend because I would be pretty useless, and I was. I did it once and a week, and for the 2-3 days after taking the pill, all I did was throw up, sleep, etc. I couldn't eat, I had no energy to do anything, and I felt like crap!

I got off that after a short period of time, and they put me on injections. At first I was going to a clinic for them to give it to me, but it got annoying doing that every week so I just forced myself to learn. I did it in the top of my leg, and although now you can play connect the dots on my leg, that's about the worst that happened. It caused me to have stretch mark- like marks, but nobody sees that. I used to get headaches the night I took it, but those went away. I also drank while taking it, and had no side effects. It's a really small needle, and it doesnt hurt.

Just be really careful while on it, because it can really mess with birth defects and stuff like that so the doctor told me not to consider trying to get my fiance pregnant while on it, and for a period of time after it because it can really cause some damage.
11-22-2011, 08:00 PM   #5
jaggartini
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I did it once and a week, and for the 2-3 days after taking the pill, all I did was throw up, sleep, etc. I couldn't eat, I had no energy to do anything, and I felt like crap!
See this worries me. I don't want to have this kind of reaction everytime I take a tablet. I have a young family (4 children) and a business so I cannot be out for the count 3 days a week reacting to a medication . My children have seen me flare, be hospitalised, react quite badly to Immuran, I just don't want them to see me like this. From what i can gather MXT can make you feel nauseous, headaches etc, call me stubborn but I don't want to have those things for the next how many years because of some drug. I don't see that as quality of life if you know what I mean.

I really don't like the thought of injecting myself either. Whilst I know it may be something I have to do I just don't like the thought.

@PsychoJane
I find it odd that they want to try that now in your therapy
No this will be after I come off cyclosporin and prednisone. When I'm in full remission so definitely not something I will start until then. I guess around 3 months time. During this 3 months I have to weigh up MXT or whether to have surgery.
They are pretty certain that its ulcerative colitis. I haven't had anything to suggest it is Chrons.

Does anyone have any good links that i could read up on the medication?
11-22-2011, 08:03 PM   #6
jaggartini
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PS
Just be really careful while on it, because it can really mess with birth defects and stuff like that so the doctor told me not to consider trying to get my fiance pregnant while on it, and for a period of time after it because it can really cause some damage.
I'm done having children (had 4 beautiful, healthy babies with this illness ) BUT the fact that it can cause such defects etc wonders what else this drug may be doing to my insides.
11-22-2011, 08:12 PM   #7
KWalker
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I'm sorry, I didn't mean to scare you. I've come to learn that just because something has an effect on one person, doesn't mean it will have the same on the next person. I could of also had this reaction because of other reasons too. I have heard though that the injections are a lot more effective, and I'm telling you I'm the biggest baby when it comes to needles. I did the injections myself and I'm telling you, it does not hurt.
11-22-2011, 08:15 PM   #8
KWalker
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PS

I'm done having children (had 4 beautiful, healthy babies with this illness ) BUT the fact that it can cause such defects etc wonders what else this drug may be doing to my insides.
This is the exact reason I am so hesitant to go on medication
11-22-2011, 08:43 PM   #9
PsychoJane
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Oups, I just realized about the UC part. I did not know they were also using methotrexate for UC. I think it's rare, isn't it? That said, if your diagnosis is UC and that you don't respond to treatment well... considering the surgery is a "cure" to UC, I would think about it even though its not fun on every aspects, it has some great advantage.
11-22-2011, 08:45 PM   #10
PsychoJane
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Did you try anti-tnf? I suppose so?
11-22-2011, 09:05 PM   #11
jaggartini
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No what is anti-tnf?

I think that might be the drug that we can only get in Australia if I suffer from Chrons NOT UC. God knows why, otherwise it will cost me a bomb.
11-22-2011, 09:19 PM   #12
PsychoJane
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Anti-TNF: the most common are Infliximab (Remicade), Adalimumab (Humira), and certolizumab pegol (Cimzia). I do believe that only Remicade is recognized for the UC though. And yes, it does cost a lot if it is not covered by the govmt or private insurance...
11-23-2011, 11:50 PM   #13
LuckySeven
 
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Hey there! I've been on methotrexate for 8 months now. I have injections of 0.6 mL every week. I am taking MTX with Humira. In my case, this combination has been incredibly effective. My doctor had explained a few side effects of the MTX but I had to way to pro's and the con's. Bottom line is that I'd rather risk it and feel better then not risk it and feel like crap. Till now I have not experienced any side effects. I usually take the MTX on wednesday's and it does not fatigue, I feel perfectly normal afterwards. I take a folic acid tablet every morning with breakfast. The only downside to MTX is that my immune system is weaker. I've had a few infections and needed to stop the MTX for a few weeks to let my body rid the infections. If you are considering Humira (TNF inhibitor), make sure you have good health insurance and talk about it with a gastroenterologist. Humira pens come in packs of two and are 1600$ CAD per pack, one dose injected every two weeks. Hope this helps!
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