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Crohn's Disease Forum » Your Story » Prednisone not working?


10-30-2012, 03:58 AM   #1
vetnurse
 
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Location: Gold Coast, Queensland, Australia
Prednisone not working?

Hi Everyone

I'm new to the forum

I'm 17 and was diagnosed with crohn's disease on the 8th of June 2012 after 6 years of symptoms and having a colonoscopy. My GI started me on MP6 and prednisone, I have now been on the pred for about 4 months, started at 40mg and got down to 25mg and then I started to flare so my doctor put me back up to 50mg I then got down to 2.5mg. I saw my GI again today and he has put me back up to 30mg because I haven't been feeling too good for the last week, but I just don't know why I am still on the pred when it is not working for me?? I also have been feeling a bit depressed lately, all the symptoms are just starting to get too much for me I think. Another thin is my GI said the MP6 is affecting my bone marrow, but supposedly not anything to worry about, anyone else had this problem??

I guess my main question is does the pred work for everyone??

I think I just need a little support

Kim~
10-30-2012, 08:09 AM   #2
Angrybird
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Hello Kim and welcome to the forum.

I am sorry to hear you are having problems with the meds I have heard that for some the pred doesn't always do the trick or it has to be at a higher does to keep things settled. One thing that may be worth looking into is enteral nutrition, I have seen mention that it can have as good a result in inducing remission as the steroids without the side effects. With regards to the 6MP is sounds like it could be affecting your neutrophil or lymphocyte count - these are part of the standard blood checks that get done whilst on this med. I would want the doctor to explain further why he feels it is safe to continue if it causing this issue..... When I was on the 'sister' drug to this (Aathioprine) I had this problem and they stopped the med. Also I would say it is worth asking to have a full vitamin panel check, it is common for people with crohn's to have deficiences in this area and could in part be contributing to how you are feeling at the moment, the Pred also can have an effect on your mood as well.

Will be keeping fingers crossed that you can be feeling better soon, please keep us updated on how you are getting on.

AB
xx
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DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
10-30-2012, 09:07 AM   #3
katiesue1506
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Hi Everyone

I'm new to the forum

I'm 17 and was diagnosed with crohn's disease on the 8th of June 2012 after 6 years of symptoms and having a colonoscopy. My GI started me on MP6 and prednisone, I have now been on the pred for about 4 months, started at 40mg and got down to 25mg and then I started to flare so my doctor put me back up to 50mg I then got down to 2.5mg. I saw my GI again today and he has put me back up to 30mg because I haven't been feeling too good for the last week, but I just don't know why I am still on the pred when it is not working for me?? I also have been feeling a bit depressed lately, all the symptoms are just starting to get too much for me I think. Another thin is my GI said the MP6 is affecting my bone marrow, but supposedly not anything to worry about, anyone else had this problem??

I guess my main question is does the pred work for everyone??

I think I just need a little support

Kim~

It actually sounds to me like the Prednisone IS working for you, but you just can't get off of it due to the level of flare you get into at the lower doses. It just sounds as if you need a better maintenance med to switch to. Usually they will do a combo with Pred and whatever the maintenance med is and once that new med starts taking effect, they can effectively taper you off of the steroids. I would look into the biologics (Humira, Remi). If 6MP is affecting bone marrow, maybe they could switch you to Azathioprine (I don't know if it would make a difference).

I hope this makes sense.
10-30-2012, 04:58 PM   #4
Johnnysmom
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I agree that the Pred is working for you, you are just having a hard time getting off it. My son had bone marrow suppression from 6mp and they adjusted his dose and we got through it. His white blood cell count was at 3.7 but his neutrophil count was at 1.9 so Dr. said he wasn't worried. It took about 5 months to get the dosing right but we did and he is in remission. If your Dr. mentioned it, he must be on top of it. My son's white blood cell count went down 3 months in a row and I was freaking out. The Dr. was nice enough to call me at home and spent a lot of time explaining everything to me. I still ask questions but I do have more patience now. I wouldn't give up the 6mp till you have to but I think it is worth having the conversation with your G.I.

Good luck Kim. (((((hugs))))))
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10-30-2012, 06:54 PM   #5
vetnurse
 
Join Date: Oct 2012
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Thanks for your replies everyone

I guess I'm just having a hard time dealing with it at the moment. I went 4 weeks completely symptom free while I was on holiday with my nan (no running for the bathroom, no pain, I gained 5 kilos, etc), I got home and the symptoms came back within 3 days, including losing 3 of the 5 kilos I gained anyone now why I could go symptom free like that and then as soon as I get home it all comes back??
10-31-2012, 02:24 AM   #6
Angrybird
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Were you lowering the dose of the pred at all during this time? What dose of the 6mp are you on?
10-31-2012, 02:44 AM   #7
vetnurse
 
Join Date: Oct 2012
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Yep, I tapered from 30mg to 15mg. I'm 75mg of the 6MP

Last edited by vetnurse; 10-31-2012 at 10:01 PM.
10-31-2012, 02:45 AM   #8
Angrybird
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It could be down to the tum feeling the effects of the lower pred dose, especially if the 6mp is not fully kicked in yet.
11-06-2012, 11:10 PM   #9
tots
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Durnig my first round of Prednisone I had alot of trouble tappering off the meds. I had to go to a low dose with a very slow taper.

I think it is working for you- what might not be working is the meds you are taking along with it to maintain remission.


Lauren
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Ok, my family Dr told me to cut down on the stress- a husband, 3 kids, and 3 dogs!
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