Question for imuran users

[rollinstone]

Hi guys, so I recently went out of remission w mild flare up, no D or anything just noticed blood again, and some pains, I was doing really well for a while, and have been on Aza for about 5-6 months. I think the flare came from after the last scope which showed only mild inflammation in one spot of the colon. What I would like to know is, have you had flare ups and then gone on pred or maybe EN for 6 weeks and gone back intro remission without adding heavier meds or increasing the Imuran dose? The reason I ask is because I put myself on Modulen to avoid steroids, and I would like to avoid moving into heavier meds and am really hoping once I get back into remission I can stay there.

 

[Catherine]

Have you had your aza levels tested?

We are going through this with Sarah, she has also no symptoms. Her colonscopy showed one small spot of inflammation.

Sarah done pred twice to back into remission as you can see by my signature.

Our current course is to increase aza to get the levels in range.

 

[rollinstone]

thx for the response Catherine, how long has she been on aza for? I havnt had my 6TGN levels tested for ages so the GI will probs request that I hope.

 

[Catherine]

Sarah has been on aza for almost 18 months.

http://www.healio.com/gastroenterol...6-a430-d735ef89a8d7}/how-do-you-monitor-patie

 

[hawkeye]

I went on a dose of prednisone and then back into remission in 2006 (before that I was in remission since 1993/1994ish after an initial diagnosis in 1990), the remission lasted until late 2009 and then things began acting up again off and on.

 

[rollinstone]

Thx for your response, just wondering how many grams per kg ur on? I'm in a flare up ATM and on 100mg for 53kg body weight

 

[Catherine]

Sarah is currently on 150mg and is 62 kgs.

 

[rollinstone]

Thx cath, is she feeling better now?

 

[Catherine]

Sarah is 4 weeks into her new dose of 150mg. She has no symptoms. We will be retesting aza levels in other month.

 

[rollinstone]

Is she handling the higher dose okay? And also did the doctor say how long it takes the increased dosage to be effective?

 

[Catherine]

If anything she is less tired on the higher dose. Sarah 's aza levels are very low. She has had the levels test twice and they actual fell while being on a higher dose. Hopefully they will increase this time.

The first blood test on this dose showed a dropped in lymphocytes to 0.7 which the GI said meant the new dose was working.

Hopefully the current plan will keep her in remission to the end of year 12.

 

[rollinstone]

I hope so, this disease is such a downer, I hope my doc knows what to do w levels and what not I really don't want to have to go onto scarier meds

 

[DustyKat]

Matt has not been in your situation as such Josh but when he was first diagnosed and commenced on Pred and Imuran, and in the ensuing 6 months, neither of them worked to any large degree due to the early development of complications.

As it was he required surgery and that put him straight into remission. He was on 100mg of Imuran in the months before surgery and he has remained on that dose since. He is about the same weight as you. He will be having metabolites done at his next GI consult in October.

Dusty. xxx

 

[Catherine]

Joshua saw your post elsewhere that your GI planning to get your dose up to 2.5 per kg.

How quickly is he planning to move the dose up?

Make sure you get blood tests least every two weeks.

Sarah is now at 2.5 per kg.

Hope this plan works for you.

 

[rollinstone]

hi Cat,

yeah I started tonight, so atm im on my 2nd day of 50mg pred (loving the energy haha) went on to 125 tonight (im a skinny britches only 53kg). Ima get my 6tgn done tomorrow, then bloods in 2 weeks, im seeing him in 4 weeks time so hopefully they review it b4 then. then I gotta go for another 6tgn test a little bit later, apparently it will take another 8 weeks for the 125 to become effective? guess ill know with the 2 tgn tests I do.

 

[Catherine]

It sound like the same plan. Sarah 's levels will be tested again at 2 months on 150mg with standard bloods tests every two weeks.

 

[rollinstone]

Fingers crossed it puts Sarah and I into remission until we can get cured