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Tapering

Is it normal to feel a little worse when you taper of pred? My doc says the Imuran doesn't start working for a couple months. I've been on it three weeks and tapering my pred and haven't felt as good as I have the first couple weeks since leaving the hospital. Is this normal? Is it a bad sign?
 

Angrybird

Moderator
Location
Hertfordshire
Hi there:bigwave: It is definitely possible that the Imuran still needs to fully kick in, what dose are you on for this? What increments are you coming down on for the pred? It may be that you need to lower the dosage at a slower rate such as 5mg a week etc. If problems persist the docs may decide to increase the dose of Imuran that you take, based on personal experience I would prefer this than to having to stay on the pred. At this stage I wouldn't panic yet as there are options to get this sorted,
 
I'm tapering off of pred right now as well. This is about my 5th time tapering in 2 years and I learn something new each time. You can most definitely feel worse. You might consider watching what you eat to help with pain. You may have been able to handle raw fruits and vegetables while on pred but now that you're tapering your body might not be able to handle them so well.
 
I am just starting my taper. I have cut back 5mg for the last two weeks. I am going all the time and stomach cramps are starting again. Also I am up about 6 times a night and have to go. I am taking 50mg of Imuran. But this has only been for two weeks as well since I started my taper.

Just going backwards is frustrating. I was in the hospital for 5 days with my flare and diagnosis and was actually getting better the first week. Went to the gym a couple times. Now I am drained and feel crappy all day. I was hoping I would not have to go the Remicade route just yet, but I need some relief.

Will docs usually wait to see how you do for a while for tapering. Is it something you just have to tough out?
 

Angrybird

Moderator
Location
Hertfordshire
Hi, I would say you need to let docs know or if you have one your IBD nurse - at my hospital there is a number I call and leave a VM, I will then get a call back within 24hrs. Do you have anything like this? I would hope they would want to change something to help with the symptoms and not just leave you to tough it out.
 
I called the GI doc on call yesterday, weekend so I couldn't reach mine. And he told me to eat soup and mushy foods and give my GI track a break. I see my doc on Wednesday. Although that seems like a long time off right now. Hopefully I will be better tomorrow. Extra Strength tylenol helps but I'm saving it for when I go to work. I don't want to pound that crap in me for four days.
 

Angrybird

Moderator
Location
Hertfordshire
Fingers crossed you will start to feel better, it's hard when you are making a concerted effort to try and get to work when you are feeling so rubbish. Luckily I am in an office enviroment so I have an option of 3 toilets in a fairly close vicinity so I can 'manage' until I can talk or see somone who can give me help on what to do. Let us knowt what the doc says on Wednesday.
 
It's still very early days on the Aza: can take up to 3 months to kick in. They might suggest upping the Pred dose again to give the Aza a chance. Have you been long on the Pred? I know it feels awful when you think you're slipping back again.
Hang in there x
 
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