Still waiting on Imuran

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dreamintwilight

dreamintwilight

Joined
Feb 5, 2010
Messages
2,384
Well, the stinking thiopurine test results were STILL not in! It's been 2 weeks since my blood test. The GI nurse called Quest and was told my results were still pending. Annoying. So, they said they should be ready by Saturday. Of ourse, my GI's office isn't open Saturdays, so they said they'd call me Monday letting me know whether or not I am okay to start taking the Imuran.

In the mean time he wants me to get the prescription filled so I'll have it ready. I think I'd rather wait just to make sure I am able to take it rather than waste a co-pay for medicine I might not be able to use. Especially since I paid for an office visit today that was basically pointless since my test results weren't back yet.

I have a question for others on Imuran. How many mg did you start out on? If I can read my doc's handwriting correctly it looks like I'm starting out on 75 mg. He said it was based on weight and I'm about 105 lbs right now, but I thought I've heard that most people start out on 50 mg.
 
Hey Marisa, hope the results get sorted out soon! How frustrating.

When I started Imuran, I was at 100mg/day... but I was also 200lbs... So, that would make sense if you are 105lbs and starting at 50mg... But I don't know... I guess see what the others have to say...
 
I have been on 150mg for over 10 years now - They put me on that much when I was around 86 pounds, and have never increased it. I don't think it is doing anything any more, but my doc said to still take it, so I do.
 
i am on 150mg daily and weigh 78kgs, here in Ireland they say its a range betwenn 1.5 - 2.5mg per kg, so you are 105lbs which is 47kg so multiply that by 1.5 gives 70.5mg so the closest to that available in tablet form would be 75mg a day which is just right!!!!! Hope it works for ya!!
 
I weighed about 105 when I started as well. I started at 50 mg for two weeks and then went up to 100 mg and have been there ever since.
 
Hi Marisa,
Hope they get your results soon - it's been ages! My doc has started me on 100mgs and I'm 130 pounds. I've been on it a couple of weeks and feel ok so far.
Gail
x
 
I started on 50mg as well. My doctor said it's best to taper up...he explained that it's like turning on a hot water faucet. It's best to start out warm or the shock can be too much. It was a good analogy for me. I eventually went up to 150mg, which turned out to be too much (I weigh 120lbs). It caused my severe nausea and light headedness. However, I was taking them all at once. I learned later through others on the forum that you can split the dosage. I have always had 50mg tablets and I think that's standard. Also, my pill bottle says "take with food to avoid nausea". I always take mine after a meal.

One other word of mention. Don't be surprised if your pee is bright yellow after taking them : )
 
One other word of mention. Don't be surprised if your pee is bright yellow after taking them : )

lol shadycat, so its not just me this happens to then!!!!
 
I started at 150mg and I was 60kg. It's something like 2.5mg per kilo of weight.
 
Yay! The forum finally loads for me. Just in time for me to start my Imuran today :) Alright, well it's good to know 75 mg doesn't seem to be too much for me. I'm thinking maybe he might want to start me on something a little higher than 50 mg since my Crohn's is being kind of aggressive.

Alright, so my next worry is this sun sensitivity business. How has everyone's experience been with that? Is that a guaranteed side effect or something that MAY happen to some people? Like I'm sitting in my house with the window open and the sun is shining in...could I get a nasty rash from the sun if I'm not wearing SPF?
 
Hey Marisa - my brother was on imuran for a while (few years if I remember right) and I don't remember him ever mentioning a sun rash.

I started the 6mp again in Sept and the rash didn't start until the middle of March - I have no idea why the delay: 6mp had to build up in my system? Angle of the sun different in fall/winter? (I was outside a lot last fall with no spf). Right now I wear SPF 70 if I'm in direct sun for more than a few minutes and that's preventing the rash so far. (My GI just said - "well, it's good to wear sunscreen anyway"....) Because of the placement of the windows in our house I don't end up sitting in the sun inside so I'm not sure about that. But I'll be crossing my fingers that you don't get a rash at all!
 
Thanks Sabrina! OH, and I just came up with another question about Imuran as I just took my first dose...maybe I'll post in a new thread. :)
 
I don't necessarily get a "sun rash", but if I am out in the direct sun (summer time) for longer than 20 minutes, I get light headed, nauseous, and go beet red (which then fades after a few days to blinding white!)
 
I've gotten used to it. I picked myself up a nice "tilly" hat a few years ago, and don't go anywhere without it!
 
I work outside all day so I wear a spf40 water resistant and hat anyway. I am not finding any troubles with sun sensitivity at all. I started right at 175mg for about 170 lbs 5 months ago and am still there. feeling groovy.

Hope it helps Marisa.

btw I deal face to face with people all day as well as being outside and I am not feeling fatigue or having any issues with colds so far. If anything my allergies don't bother me as much as they have in past years.
 
dreamintwilight said:
Thanks, Kenny! Hearing stories like yours gives me hope I will tolerate it fine and not feel like it impedes my life :)
Click to expand...

that said guess what I developed on my Calves and back of my knees this weekend :(

Standing out in the tree Nursery 8 hrs a day in 80 deg sun seems to have surpassed my limits.
 
I just read that on the other post! Guess what I just developed?? I weirdo rash on my stomach area that looks like heat rash. It could be because I went to this concert last night and it was ridiculously hot and we were sweating the whole time. Today was the first time I was able to shower, so I'm hoping it could be irritation from the dried sweat. Not raised, but red and splotchy.
 
Well...got my first set of blood tests done yesterday for Imuran and heard back from the GI nurse about the results. Everything seems to look fine so far with my CBC and CMP. I guess I'm metabolizing it alright and my white blood cell count isn't too low.

My GI is off today, so she's going to talk with him Monday to see if he wants to increase my Imuran dosage and/or when I'm coming off of Entocort. Looks good so far! :)
 

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