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Crohn's Disease
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Posted 3/13/2015 11:58 AM (GMT 0)

Hi there, Am new to the site and have several questions about Methotrexate. I was recently diagnosed with small bowel Crohn's disease, which I supposedly have had for quite a while. I was originally put on Imuran and tolerated it on a single dose for two weeks. My GI upped the dose to 3 a day and thats when all went haywire. Felt like I had the worst flu ever/ hit by a bus reaction. Came off of that and went onto Methotrexate injection. Am on my 3rd week and feeling almost live-like. Having some issues though. My foot, especially my big toe feels numb most days. Itching and red patches on my scalp and leg are driving me nuts. Also, my gums are receding, which just started to get really bad the last couple of days. Have had really bad migraine headaches as well, but that could be due to the severe weather changes this past week. Dizziness is another issue, but that comes and goes as well.Some eye pain as well but that's off and on. Am always cold, especially my hands and feet. And am really TIRED.

Anyone else had these type of reactions?

Am currently on Methotrexate 2.5ml injection, folic acid, Align probiotic, vit B12, Vit D, Calcium, multivitamin

Posted 3/13/2015 6:59 PM (GMT 0)
I was on Methotrexate for about 3 years. One year just on its own, and two years combined with Remicade. I don't recall having any really dramatic side effects from it until I added Remicade. I do however remember hive's from time to time but nothing major. I do recall getting some pretty intense headaches though throughout the entire period of time. They have since disappeared but have retuned on occasion while on Imuran now.

Everyone is going to be a little different in their reactions to meds.

I think cold hands and feet are essentially a symptom to many with Crohn's. And tiredness is especially an issue with a vast majority of us so I would perhaps separate these possible disease symptoms rather than med reactions.

Sorry, I have no advice... wish I could be of more help.

What about hydration? - in regards to the dizziness and tiredness... you could ask your doctor to check your electrolyte balance and find out if it's low/high. Might be a good starting point for that aspect. When you're dehydrated or you're electrolytes are off you can feel dizzy, tired and have some muscle cramping type symptoms. A lot of diarrhoea can lead to this.
Posted 3/13/2015 8:29 PM (GMT 0)
Thanks for the advice on hydration. I don't drink enough water now that I am at home.

The cold hands/feet only started when I went on Imuran, as well as the numbness. Headaches started about a week ago(on my 3rd injection now).

Anyways, thankful that I have normal bowel movements now and less stomach pain. Never thought I'd say that to a stranger blush .

Just don't care for the side effects that creep up unexpectedly. Today it was 2 blister -like bumps on my face. Go figure.

I'll check with the doctor, next time I see him. Thanks again

 

Posted 3/13/2015 10:47 PM (GMT 0)
Are you taking Folic Acid with your methotrexate? My doctor said it's really important to do so. I've also read that it can really help with side effects from the medication. Might help with some of those things, although not too sure about the toe. I would probably get the checked out.
Posted 3/14/2015 1:15 PM (GMT 0)
Hi Jennifer,

Yes, I am taking folic acid, every day except the day i get the injection. I am also taking fish oil(Super EFA), Vit D, Vit B12, multivitamin and Calcium.I have changed my diet to include healthier choices(saw a dietician, although I don't think she was very familer with Crohn's)

I too tried the Imuran and my pancreatic enzymes were elevated, so had to get off that. Horrible stuff.

Also when I was in my late 20's(I'm 60 now) I had a twisted bowel and had surgery to cut out that section of bowel. I was just recently diagnosed with Crohn's but have been suffering with bouts for the last 2 years.

I have noticed that alot of the emails I've looked at, that people are on various combination of drugs. Does One drug not work for that long? That has me a bit discouraged.

Thanks for the advice blush

Posted 3/14/2015 7:13 PM (GMT 0)
Glad to hear you are taking that. The Imuran did the same thing to me. After only a week sent me in to the hospital with pancreatitis and an inflamed liver. So that's why I'm on the Methotrexate now too.

Yes, sadly sometimes they only seem to work for so many years, when they do work. It is very discouraging. I've bounced through quite a few drugs just over the last few years. But that's because they either didn't work at all or I had that lovely reaction to the Imuran. I've gotten quite frustrated looking for something that works. I'm hoping that the Methotrexate and Remicade combo works for me. I'll take a few years of remission if I can get them.
Posted 3/15/2015 1:24 PM (GMT 0)
Thanks for the reply. Some of the emails I have read have been so heart-breaking. I've had bad bouts of diarrhea for about two years off and on and have lost about twenty lbs. Immodium always sort of kept it bearable and more under control, but those attacks of it were so urgent, that I barely made it to the washroom on time(especially when driving to work-Yikes). I've always sort of had bouts of the runs, but thought it was just eating the wrong types of  foods and anxiety-related. However, now it's attacking other parts of my body, like my eyes, rashes, joint pain, mouth cankers, hemmoroids, and now my gums(receding gums). Quality of life isn't as good, but compared to some of the emails I have read, I'm lucky. I guess the main thing is to be hopeful and try and stay positive.

Anyways,again... thanks for the reply. Hope the combo below works for you.

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