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Crohn's Disease Forum » Treatment » Methotrexate » Worried about taking my Methotrexate.


07-11-2012, 04:44 AM   #1
Joleen23
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Worried about taking my Methotrexate.

Hi eveyone .
I just really want to see if anyone feels the same as me.

I take Methotrexate (tablet form) and have for about 7 months with no side affects & my crohns was really good, I recently had a flare (i think triggered by a stomach bug) and am starting to feel better after a 4 week pred course.

My doctor is now upping my metho dose too with the view to go back on remicade in Oct , then medication Free by April when myself & husband would like to start considering trying for a baby.

The problem is , i am terrified of taking my methotrexate! I have been talking to some people i know , who for various reasons there Doc has wanted to put them on Metho and they have refused to take it. When i have asked them why & said thats what i am on , they have freaked out & told me to come off it ASAP ! It's now worrying me to the extent , that stupidly i am purposly missing my medication & am now starting to flare again.
I know im being silly & i really don't want to be ill again , but im scared
Does anyone else feel this way , Do you just take it ?
I have previously been on Asacol,Aza,6Mp,Remicade.
I have monthly blood checks currently on my Methotrexate.
Any advice or support would really be appriciated.
Many thanks
Jo x
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Meds :

Methotrexate 20mg per week
Omeprazole 40mg per day
Ferrous sulphate 3 x tablet per day
Folic Acid 1 per day (5 days a week)
Ranitidine
(trammadol & Paraccetamol for painrelief

Diagnosed Nov 2010 - Crohns Colitis
(bowel problems since 16yrs) 29 Yrs old now
So far tried Asacol,Aza,6mp,Remicade
07-12-2012, 05:04 PM   #2
KayleighMeek
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I am currently on methotrexate and yes there are some scary side effects with this drug but there are with any for treatment of crohns disease. Did the people say why they thought you should come off methotrexate?
If you are still worried about it speak to your dr about it they may be able to reassure you about the drug, but it sounds like you have been ok on it so far and your dr would have said it showed in your blood tests. Hope you start to feel better about it soon x
07-28-2012, 03:44 AM   #3
Squadinho
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You're always going to get horror stories from people about Methotrexate. I've been on it for around 2 months and have had no problems.

I think alot of the stories come from people who have to take it more than once a week, but I know several people who take it and it has changed their life. Your doctors should be monitoring you whilst you're on it closely. I've been given a little booklet where I have to record all my blood results and dosage.

From what you're saying you've had a positive experience with the drug before, there is no reason why that is going to change.
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Diagnosed July 2010

Crohn's disease in the Jujenum, Terminal Ilium, Caecum, Sigmoid, Descending, Transverse and Ascending Colon.

Current Meds
Remicade / Infliximab Infusions
Methotrexate

Past Meds
Azathioprine 150mg
Prednisolone
Calcium + D3 Supplement
08-02-2012, 04:59 PM   #4
BadGut
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I know what you mean I have been on it for about a year now and am currently trying to get off myself, because of the horror stories. I have had several people tell me how they went blind, and well that just scared me...because I haven't been able to get a correct eye prescription since on this medicine. I have also noticed that my headaches are worse. My doctor says that I'm not on a high enough dose for any of that to affect me BUT all my doctors refer to me as the "exception"...
I am also on Cimzia but that didn't control my Crohn's by itself, but can NOT go back to Remicade because I got MRSA from it.
08-05-2012, 02:28 AM   #5
SandyUte
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I'm not the IBDer in my house, my husband is. However, I have taken it myself while I was mistakenly diagnosed with MS (I had had a stroke instead). Just before I was put on it, I was told I would never be able to stop using a wheelchair because I had been dependent on it for so long. During the time I took it, and not until I started taking it, I improved little by little until I barely use a cane today. I consider it a miracle drug for me. I took it for several months. Everyone is different though, and I say if it is working for you great, and if not, get off of it. I also have had no side effects, then or several years later
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Last edited by SandyUte; 08-10-2012 at 08:45 PM. Reason: typo
08-10-2012, 07:02 PM   #6
crohnic
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Hi Jo

I have recently started taking MTX, due to my pancreas failing to tolerate aza. The options the doctors said were infliximab(remicade) or MTX suggesting I tried the remi in 8 weeks... Anyway a few days later they called me back and said they wanted me on the MTX ASAP?? So I started taking it, without really having a chance to make any sort of informed decision. I had my second dose of 25mg yesterday and I really don't like this stuff I find it kills my appetite for the few days, and the sun made me feel a bit woosey :-\ and I very rarely get headaches but now :-( so I thought I had better do some research into what I was putting in my fragile gut and what I learnt scared me! Something developed for cancer 70 odd years ago that jus so happens to help with crohns, psoriasis etc. :-\ so I'm going to look for other options!
Peace <3

2
08-11-2012, 12:18 AM   #7
Patricia56
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My honest opinion - ignore those horror stories. My son's been on it for 3 years with no problems and I know a number of other kids on it who have had not ONE serious side effect among them. But I know you're scared so here's more info for you to chew on.

Methotrexate is indeed used to treat cancer - usually in much, much higher doses than it is used for rheumatoid arthritis, lupus and IBD. You may have noticed your GI refer to your treatment as Low Dose Methotrexate - for that very reason.

Methotrexate kills certain kinds of fast growing cells - among which are some kinds of perfectly normal non-cancerous white blood cells. Those same cells are the ones that cause so much trouble for some people with Crohn's.

Saying you won't use this drug because we only recently discovered that it was useful in treating Crohn's seems very short-sighted to me. Would you say the same thing about Xifaxan - an antibiotic originally used for traveller's diarrhea that is being used with great success by many GI's to treat Crohn's and a variety of other GI conditions? I doubt it.

I realize it's not a perfect analogy but I do think the panic over using chemotherapeutic drugs is just that - panic. It's not based in a clear understanding of the risks and benefits of using these medicines, particularly the risks of NOT using these medicines. We know that untreated Crohn's will destroy your intestines and your life, sometimes slowly and insidiously, sometimes quickly and dramatically.

Before chemo drugs like 6-MP and Methotrexate were used to treat Crohn's, CDer's lives were as much as 20 years shorter than the average person, close to 100% had multiple major abdominal surgeries, most spent years on prednisone. I don't think we want to go back to that because we are scared of the very tiny risk of getting side effects from these meds.

I don't mean to dismiss your worries. It is scary to be faced with these choices and it's unfair that you should have to make these hard choices. Life has handed you (in my case my son) lemons, really stinky ones.

But stopping your meds and putting yourself in a flare without checking things out with your doctor first sounds like you have lost sight of your goals.

If you get so sick you need surgery, develop a fistula or have to go on prednisone and have a major setback - you will not be up to making a baby next spring.

I think you need to call your doc and get back on your meds. You may need a short pred burst to calm things down or you may want to try a short period of EN instead since it will also be good for you nutritionally and therefore move you toward your goal of making a baby.

All the best.
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Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.
08-11-2012, 07:21 AM   #8
KWalker
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I was on methotrexate for a little over a year I believe and it never gave me any negative side effects. I first started taking the pills and got really sick from it and it made me feel terrible when taking it but I switched to the injections and there was a HUGE difference! It bypassed the reactions from the digestion period and for me seemed to be even more effective. Its a very small needle and I injected it myself in the top of my leg and didn't even feel it.

Remicade is much worse, and I believe you said you were on that as well. I would take methotrexate again anyday before going on Remicade again and actually I'd probably say the methotrexate is my "drug of choice". For effectiveness vs. Side effects it was by far the best for me. You will get horror stories about anything. I've been off meds for 2 years now and some people have told me I should be dead by now because of the diarrhea. Just complete nonsense. So just try and stay positive and be aware of how you're feeling and report anything to your doctor immediately.
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Diagnosed:
Age 2 (1992)

Previous Meds:
Prednisone
Remicade
Humira
Methotrexate (oral)
Methotrexate (injections)
Cipro
Flagyl

Current Treatment:
200mg Simponi, Psyllium
08-27-2012, 08:49 AM   #9
jecoll
 
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I've doing 12.5mg injections for the past year and a half and my Crohn's has been under control. When people are doing well on their meds, you don't hear much about it because they're out living their life. But for the small minority of people who have a bad reaction or experience side effects, they tend to be VERY vocal about it - and understandably so; believe me, I've been there. But it is something to take into account when you hear the horror stories.
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Dx'd in 2000/Crohn's
Meds: Methotrexate
Supps: Folic Acid, L-Glutamine, D3, B12, Iron, Veggie Juicing
08-27-2012, 12:44 PM   #10
crohnic
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I guess diet didn't work for you guys? I've been on chemicals for about 8 months now and only just finding about the Wonders/possibilities of controlling my crohns with diet!! Shame on the NHS they told me it was a waste of time, not if it stops the need for nasty chemicals!

2
09-03-2012, 02:58 AM   #11
DevonM
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I used to be on Methotrexate up until not long ago. I was fine for the first few week then I started to get sick for a day before and a day after I took my medicine. The doctors told me it was a quite common side effect of the medication and even things like saying the name of the medicine could trigger a sick feeling. This could be why people are so freaked out when you say your having it as a lot of people experience these side effects, I struggle even taking normal tablets as it reminds me of my methotrexate and sometimes even drinking wter makes me feel a bit sick as I used to take my tablets with it. I have not been off the medicine for long, only about a week now, so I'm sure these little side effects will go away. It is different for everyone and my guess is you have been on it for 7 months and unless you are going up to a drastically higher dose you should experiance no problems.
09-03-2012, 07:39 AM   #12
Aussie
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Hi Joleen, I find it a little odd that you're soon to start a family and being put on methotrexate. Why not start the Remicade now and avoid the methotrexate? Also, why did you stop the Imuran/6MP which you can safely take through pregnancy? The other point I would make is why would you stop your medications (with the exception of Methotrexate) when you get pregnant? The biggest risk to the foetus is a flare of Crohns. Some people would stop the biologic in the third trimester which isn't unreasonable, given that is when it is actively transported across the placenta.
09-28-2012, 11:03 AM   #13
Joleen23
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Hi Everyone , thanks for the reply's , sorry it took so long to get back, Feeling a little less worried now , i suffer with Anxiety and tend to fixate on things. I realise it's silly to not take the medication especially when it is helping so much. Im only going to be on the methotrexate till January , During this time im going to being having Humira(adlimab?) injections as well. The hope is that come January time i may be able to go medication free , then 6 months down the line we can start trying for a baby, but nothing i definate myself and my husband are not in any rush and i would rather be heathy before trying for a child. I was asked above why i was no longer taking 6mp or Aza , the reason i no longer take them was due to the horrific joint pains i got (had trouble walking in the end) and i lost my hair. Im a little unsure about going medication free but my GI thinks its the best option.
09-28-2012, 04:09 PM   #14
Aussie
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Hi Joleen, if your GI thinks going medication free during pregnancy is a good option then I would suggest getting a second opinion from an IBD specialist - biggest risk to baby is a Crohn's flare.

Best wishes.
09-29-2012, 07:46 AM   #15
Joleen23
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Hi Aussie ,

It's something i will look into. Thankyou
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