Imuran rant.

[EmilyElizabeth]

So I just started Imuran. I'm trying to be positive about it, hoping it works for me and I don't have an awful reaction to it, but I am very skeptical because I am so prone to drug reactions. I know I need to be on something though so I'm fine with it. This is my first real crohn's drug other than antis. I have two beefs though:

1. Why is it that so many people on this forum including grown men have been on 50mg for years and that works fine enough for them, yet my GI says I have to bump it up to at least 100 soon as possible? Actually, he was ready to start me on Humira even though I've been on nothing yet!

2. I know this topic has been beaten to death on this forum...... but seriously the contradiction drives me absolutely mad re. pregnancy and imuran. My GI says: Yes, you can get pregnant on this it is safe, recent studies show it is, methotrexate is the only one that isn't safe. My pharmacist when I filled the prescription says: DO NOT get pregnant on this!! (then I told her what my GI said,) then she shows me the official recommendations and how it's category D etc. and is looking at me like I'm a dangerous crazy person. UGH!!

Thanks for listening. :angry-banghead:

 

[Robert747]

Hey there.

It is curious I agree. I know a girl of 18 and has been on 150mg for some time with no major issues - so when I started on 150mg in April I thought well if she can do it there will be no problem for me (53 - 14st, fit, blah, blah) - but I soon contracted Shingles and I am now down to 100mg. Who can understand the whys and wherefores!

 

[cecilialynn]

Hi i have been on Imuran since mid June at 125 mgs , just pushed me up to 150 last week . It goes by weight. because im still on Preds and am slowely weening off them my weight has gone up so thats why they upped me. I have not had any weird reaction to this med otherwise. Good luck

 

[hawkeye]

Good questions. I was on a lower dosage - 50mg for years and had it upped to 200 mg/day - probably a transition over the years may have worked better.

 

[Catherine]

My 17 year old daugher takes 100mg/day. She dose has been increased with her increase in weight. She started at 50mg/day in February.

 

[D Bergy]

They check my blood to determine the proper dosage.

I was at 125mg with my Iliostomy. Now that it has been reversed, the dosage could change.

I assumed this is how it is always done, but maybe not?

Dan

 

[lola99]

50 mg works for some people but im a petite lady and im on 75mg. You can go higher. From what I've read and heard from doctors imuran is really not all that safe to be on while your pregnant but it can still be safe. Humira is safer and ive recently started the switch (not to get pregnant) just because imuran wasn't working for me. I had no reactions to the imuran what so ever and i was pretty scared after reading about everyones side effects. I didn't get tired, nausea nothing.

 

[EmilyElizabeth]

That's what I was thinking hawkeye, since I'm young I'd leave room to move the dose up over time. Lola, do you really think Humira is safer than Imuran? I thought it was just that there haven't been enough studies on it yet, and that it's more powerful than Imuran..

 

[lola99]

My gastroenterologist told me that it was safe to be pregnant on. There are risks with any medication but a lot of women have had successful pregnancies on both.If you look at imuran and biologics they have the same side effects. Its important to read up on it and to talk to other people who have actually used it while pregnant and also discuss it with your doctor. The thing is even perfectly healthy women who aren't on anything can have sick babies. Pregnancy is a roll of the dice. Luckily both my children came out perfectly healthy and the last one was born while i was in a flare and didn't know it and he was almost 9lbs.

 

[Gra]

I had a bad reaction to Imuran (50mg/day) almost immediately after I started taking it. Night sweats, arthritic pains in all my joints, esp. knees, hips, back (I couldnt even get out of bed without help). Also red spots on my hands, arms and red welts on my head. Plus other symptoms. I had never had any of these symptoms before - in other words Imuran induced a full blown Crohns Flare, which was far more severe than anything I have ever had before.

My GI told me to stop taking the Imuran, within about 3 days of stopping I returned to my 'normal' (if you can use that word for crohns) state of health.

Yet some people are on it for years and swear by it.

 

[EmilyElizabeth]

Lola that is comforting to hear about your experience, and you know, I really do already know everything that you said but I still find it hard getting past the guilt when others don't agree or understand? I'm a worrier. But I guess I'll get better with that over time.

Gra I'm sorry to hear about your bad reaction that is exactly what I have been waiting to happen to me! But it hasn't happened after a few days so maybe I'm in the clear.. bloodwork will tell I guess. Have you started humira or are you trying to hold out/ try something else?