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My story and a question

my story and a question

This is my first post and I love love love :wub: this forum. It has been so comforting to read the threads and know that I'm not alone on this journey.

I have had symptoms of IBS since I was a teen, :poo: decades ago. Had a colonoscopy in Oct 2010 and Dr. found ulcers in Terminal Ileum. Did blood test and upper GI also to confirm Crohn's. Have been on Pentasa since then, off a couple of times 'cause I ran out. Was also on Prednisone once. I went to the hospital last month for partial bowel obstruction. Did the NG tube, then clear liquids, semi-solid, then solid food and went home.

Now I'm on Azathioripine 50mg, Prednisone 30mg (Dr says he wants me to be on the Pred for a year) fun, fun, Pentasa 3 gms, and Pantoprazole.
Is it unusual to be on Pred and Aza at the same time?
I am waiting to hear from the Dr about blood test results before increasing the Aza to 100mg.

:smurfin:
:sign0144:
 

DustyKat

Super Moderator
Hi and :welcome:

Why do they want you on Pred for a year? Considering the side effects of Pred I would question the doc about it.

It is normal to be on Pred and Aza at the same time. The idea is that the Pred hits the inflammation hard and fast, then as you taper off, the Aza takes over as maintenance medication. It takes Aza at least 3 months to become fully therapeutic hence why you start taking the two together from the outset.

Good luck and keep us posted!

Dusty. xxx
 

Angrybird

Moderator
Location
Hertfordshire
Hello and welome to the forum :) Dusty has hit the nail on the head as to how the meds work. This is exactly what they did for me many years ago and what they are going to be doing again now. I would really question though why your doc thinks you need to to be on the pred for a year, this is a very long time and if things are settled after a few weeks and the inflammation is gone why still be on it? I am already tapering off it and I haven't even started the Aza yet! Also have they got you on anything like Calcichew D3 Forte? This is really something you should be on when taking something like prednisone. I hope the Aza does the job and let us know how you get on.
 
Thank you all Angrybird, DustyKat, and Artificial!
Sorry, about taking so long to reply... I do not know how to navigate the forum, new to doing this. I've seen the Dr. once since the post about 2 weeks ago. I still have inflammation, burning feeling, pain sometimes (dull ache, also sharp). Have strictures also. Dr has increased the Pred. to 40 mg. and the Aza to 100mg.

Will see the Dr again in March, about 4 wks from now.

Also, I had blood test Dec 29, and it took a month for the Dr to receive the results, before he would increase the Aza.. I'm using a different lab now.

I don't have medical insurance that I can use right now. The dr. is trying to use the most cost effective treatment for me. Maybe I misunderstood him about the Pred? I will ask him.
 

David

Co-Founder
Location
Naples, Florida
Greetings :)

Good for you on the D3. How many IU's are you taking? With those ulcers in your terminal ileum, you may want to get your vitamin B12 and folate levels checked as well. I realize you don't have insurance but I think those would be worthwhile tests if you can swing them.

I agree with Dustykat about the Prednisone. A year is a LONG time to be on that. I'd research and ask your doctor about enteral nutrition which is highly under-utilized here in the states but can have the same remission induction rates as prednisone without the side effects.
 

David

Co-Founder
Location
Naples, Florida
IF you are indeed deficient, 1000iu would likely not be anywhere enough. I'd suggest getting your actual numbers tested to find out if you are indeed deficient and then tailoring your dosage based upon that. :)
 
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