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Off the Pred

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Ulcerative Colitis
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Posted 6/21/2017 6:36 PM (GMT 0)
Well, after being on Pred for nearly two years, I am finally off it.

However I feel like crap. I am so tired, grumpy and achy.

I am still waiting for the aza to kick in after a dose increase about five weeks ago. Its hell! I still have lose stools, frequency and blood.

I am trying to remain optimistic but feel anxious that aza isn't working. Can't have biologicals so it would be surgery.
Posted 6/21/2017 7:09 PM (GMT 0)
Surgery is a viable option. All you can do at this point is give the Aza a fair wait and go from there.

Your circumatances are specific as what you cannot use. The determining factor is your tolerance of symptoms.

I'm realllllllly happy to hear you're off the pred. Have you had a bone density test done?

q
Posted 6/21/2017 7:24 PM (GMT 0)
Hi Q

Yes I had a bone density last August and it was fine. Have been taking calcium and vit D supplement.

I think I could possibly e suffering withdrawal symptoms. Wonder how long they last. I did taper slowly reducing by 5mg every 14 days.

Symptoms are tolerable most of the time but I want to be better as we all do.
Posted 6/21/2017 7:29 PM (GMT 0)
I bet a lot of the fatigue is from pred withdrawal. Hang in there, at least you are off that drug finally.
Posted 6/22/2017 11:57 AM (GMT 0)
Hey Martha,
Yes I'd say you're having pred withdrawal symptoms. I would imagine you're going to feel like crap for awhile, since you were on it for 2 years. I have pred withdrawal symptoms too, even reducing small amounts slowly. I take tylenol and epsom salt baths to combat the aches and pains. It's tempting to drink coffee to combat the exhaustion but I find coffee makes me feel much worse overall, so I try to take naps instead or just rest throughout the day. I'm also trying to stay away from eating much carbs and sugars (breads, treats) as those will also drag your energy levels down. Glad you are off the pred! I'm now at 35mg but with a very slow taper it will be awhile before I'm done (God willing). I'm planning on surgery if my current treatment plan fails. Best wishes to you.
Posted 6/22/2017 9:25 PM (GMT 0)
Thanks for your replies.

Plucky. I hope I don't feel like this for too long. Hope you to manage to get off pred and that you reach remission before the need for surgery.

Waiting to see if the azathioprine works is stressful. If this fails then I think it is surgery for me too.

I am trying a low residue diet at the moment to see if that helps my symptoms.

Post Edited (Mad Martha) : 6/22/2017 3:29:20 PM (GMT-6)

Posted 6/23/2017 4:28 PM (GMT 0)
Words are beyond me at the moment.

I feel so frustrated, angry and disappointed.

Got to stop aza cos my blood **** is1.7 (neutrophils) and go back on the steroids.
Posted 6/23/2017 5:23 PM (GMT 0)
Oh no! Sounds like you have Neutropenia with a consistently, very low count of white blood cells (neutrophils) and therefore your gasteroenteroligist had a complete stop on the Azathioprine. Sometimes they can simply reduce the dose of Azathioprine and have your numbers come back within range, I take it that is not offered?

Your neutrophil numbers should come back into a normal range about 6-8 weeks after ceasing Aza. I had low neutrophils at once point, and a simple dose reduction was sufficient (going from 75mgs a day down to 50).

In the meantime be more careful around those who are sick as with low neutrophils you are more prone to get a flu or cold. Be more vigilant with hand washing and avoid those who are sick. At least it isn't currently cold and flu season...

What does this mean for you longterm. Without the AZA does that mean surgery is all but inevitable for you with steroids as a holdover until then?
Posted 6/23/2017 7:47 PM (GMT 0)
What annoys me is that haemo says I am ok if my count is above one, which it is 1.7. Gastro are panicking. my white count has never been in normal ranges and goes up and down in a cycle. I have been told I can have GCSF to boost my white count. I have tried to speak to haemo and my gi secretary but of course everything happens on a Friday afternoon and you cant do anything.

I have no idea whats next
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