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06-23-2011, 07:24 PM   #1
radchic
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Join Date: Dec 2010
Location: windsor, Ontario

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Imuran not working?

My 16 year old son started on imuran 4 months ago, but has been on prednisone as well till the imuran kicked in. At our last visit, the doc told us to start weaning down the prednisone. We got down to 5 mg and he started vomiting. The doctor wanted to increase his prednisone, my son refused. So we continue on the wean but he has started with mouth sores and still vomiting occasionally but it is much better. Last month his ESR was 1 and his CRP was.9 This month his ESR is 18 and his CRP is 8.1. Has anyone else experienced these side effects? Could these new values be his new norm, now that the prednisone is almost out of his system? Thanks for listening.
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Rachel
(mom of Lucas 18 CD 12/10)
Imuran 125mg
Pentasa 3000mg
materna
iron
06-23-2011, 08:50 PM   #2
davidr
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Join Date: May 2011
Location: Washington
A CRP of 8.1 is not normal--it usually means you are having a flare. It sounds like the Imuran is not working well enough to put him in remission.
I tried the Imuran + Pentasa thing when I was first diagnosed, and it didn't work for me. You might want to start thinking about other treatments.

----------------
Current meds:
Remicade every 8 weeks
50 mg Imuran daily
06-23-2011, 08:57 PM   #3
Crohn's Mom
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What does his doc have to say about the raise in the inflammatory markers?
IMO that is quite a large increase for such a short time.
From what I have been told by Gab's docs (she was on 6mp), that it has been found that it either works, or it doesn't...there was no grey area here. I was also told that it can take up to 6 months to take affect.
That being said, maybe Lucas should give in and raise his prednisone dose back up; at least for another couple of months until you can truly see if the Imuran is going to work ?
Those are never "normal" levels. again...my opinion on that.

I hope he starts feeling better soon! Those mouth sores hurt and may be enough of a "pain" to convince him otherwise on the prednisone.

hugs
__________________
~T~
Mom to Gab (20)
DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
06-24-2011, 02:43 PM   #4
Jules mac
 
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Join Date: Jun 2011
Location: United Kingdom
Im really sorry to hear this, i am having the same problem as your son. Im on prednisolone and started on azothioprine 2 months ago which is suppose to allow me to get off the prednisolone. Every time i get down to about 20mg of prednisolone ( and 100mg of azo) I have a major flare and been hospitalised twice. My doc said that it would take about 12weeks for azo to really take effect but now im getting down to that danger level again im getting nervous as i dont really feel any better since being on azo and dont wanna feel that bad again as it just comes on one morning and thats it game over for me!! Anyone else been successful with azo taking over prednisolone?
06-26-2011, 02:04 PM   #5
littlemissh
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I have been much the same also. Pred lowering causes symptoms, so that I have been on pred since october and aza since january. My ESR last week was 19 and my hb had dropped again (which is weird because i have never had raised inflammatory markers even when I was at my worst!) I have had my aza increased again and am now on the max dose as my white count is just below normal now. I have been on the higher dose for 1 week now but will probably take a little longer to kick in. My gastro thinks the increase in aza will do the trick. I do feel so much better since the aza started in january and that the increase dose will help me. I too will be glad to get off the pred but am happy to stay on it if I need it.

Is your son on max dose azathioprine ( usually 2- 2.5mg per kg though some can tolerate higher and others cannot tolerate that much)
__________________
Diagnosed Crohns small bowel 2010,Gastroduodenal crohn's Jan 2012. Gastroparesis june 2014.
Duodenal perforation/peritonitis nov 2011. Portacath placed Nov 2013. Gastric pacemaker 2015.
Perforated jejenum/peritonitis oct 2015, PEJ for enteral feeding nov 2015

On Humira every 7 days, intermittent iv iron, regular blood transfusions :faint:
On TPN since March 2016.
06-26-2011, 03:38 PM   #6
MumofOli
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Location: Norfolk, United Kingdom

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Oli was on 50mg of aza but after 3 weeks of taking it he was violently sick every night (GI told us to give it to him at night as it can nausea) they then dropped it to 25mg but he still was really sick. They then decided to stop it completely and put him on Asacol and Omega 3.
__________________
Mum to Oli - age 13

Dx Crohns March 2011

Infliximab Infusion every 8 weeks since July 2013
Asacol 400mg x 3
Maxepa (Omega 3) 1000mg - stopped Aug 2014
Omeprazole 10mg - stopped Nov 2011
15ml Galfer (iron) - stopped Sept 2011
Manuka 20+ honey
No more Pred
Cannot tolerate Azathriopine (Imuran)

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