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Finally off pred!

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Ulcerative Colitis
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Posted 3/27/2008 2:32 AM (GMT 0)
After 5 long months on prednisone.. I have tapered completely off of it. I haven't taken it for about 4 days now. I am soooo hoping I lose the weight I gained fast.

I was supposed to be on Entecort as a helper to taper down, but I lost the prescription and then my dr didn't call it in when I asked them to. I was doing fine so I figured it wasn't a huge deal.

Now I have a bit of the urgency back... formed stool and no blood. I'm scared though that the urgency means somethings wrong or that being off the prednisone isn't working. I told my friends at work that if I have to go back on prednisone I'd probably have a complete, total and full blown break down. I am wondering if it's the food I'm eating.. my mom swears up and down that it is. I'm not eating horrible though so I dunno. What causes the urgency??? Especially without D or blood?

Posted 3/27/2008 2:49 AM (GMT 0)
Kara, the urgency is caused by inflammation in the rectum. Remember, that will be the last area to heal and healing doesn't occur overnight. I'd suggest talking to your GI about some rectal meds - Cortifoam or Rowasa perhaps - to help heal the rectum and try to prevent it from going into a full-blown flare. Treating as soon as you have symptoms usually works better than waiting until you're really sick.
Posted 3/27/2008 2:56 AM (GMT 0)
thanks I'll do that. I'll have to do it soon too I suppose. My insurance only lasts for another month... my hubby just got laid off... fun huh?? lol
Posted 3/27/2008 2:58 AM (GMT 0)
Kara, congratulations on getting off prednisone. Hallmark really needs to come out with a card for that one. It's such a big deal. I agree with Judy, you might need some rectal meds to get you through. Saw that you'd been alternating from 5 to 7.5 mgs of prednisone. Did you go down lower to about 2.5 before you got off? That can make a difference for a lot of us. But ask about the rectal meds.
Posted 3/27/2008 8:53 PM (GMT 0)
Sweetmelody, no matter what you do with your budget and whatever you have to sacrifice, make sure you get COBRA coverage before you lose your husband's coverage. With UC you can't afford to have a gap in coverage or the next insurer probably won't cover your pre-existing condition. The Lialda is very pricey and you're likely to flare again if you go off. If you flare again and various other meds don't work for you and you want to try Remicade at some point, it's also very expensive. I asked at my hospital during my last infusion and was told it $4,000 an infusion for me, and I go every six weeks!

Please make sure you keep insurance coverage!!!

Meesh
Posted 3/27/2008 11:08 PM (GMT 0)
Call the doc for rectal meds!

I second the COBRA coverage. Don't want to go down the pre-existing road...

So glad to hear you're off the pred! I hope things go well :)
Posted 3/31/2008 3:23 AM (GMT 0)
yeah but COBRA is super expensive... we dont have that kind of money
Posted 3/31/2008 10:05 AM (GMT 0)
If you think COBRA is super expensive try paying for your UC meds.
Posted 3/31/2008 10:29 AM (GMT 0)
Congrats on getting off of the Prednisone!

I am NOT qualified to advise you on the insurance issues, but I sympathize with you on the weight problems. I went from being 30 lbs underweight (meaning: I had lost 30 "good pounds" due to the bowel problems) to forty pounds OVERWEIGHT by the time my flare had ceased. What I did to correct it:

I ate about 6 times a day that summer:
Toast (no butter) and fruit (banana and grapefruit) in the morning before work
Baby carrots mid-morning
Turkey or chicken breast cold-cut sandwich and grapes for lunch. Celery if I was hungry.
Pretzels late afternoon for a snack.
Dinner (whatever mom would cook; I had her push protein and veggies)
9PM snack of broiled chicken breast

I'm no nutritionist, but that diet worked all of last summer and helped me get back down to my pre-UC weight in about 2 months. Along with multivitamins and iron supplements, I felt well-nourished. Just be sure to stay awake as much as you should and keep your metabolism cranked-up via many small meals.

Take advantage of this time of year. Get out in the sunshine, walk around the block before you go to work, then walk around the block when you get home to wind-down before your evening activities. Walk your pet or your spouse (are those the same thing? haha) at sunset and you will feel GREAT. Mother Nature does wonders for the soul, which do wonders for your body. Eventually, as your muscles and energy come back, try to do whatever exercise you were doing before your flare.

The prednisone effects were gone for me in about 2 weeks, I think. Be cautious of the sun for a bit, though.
Posted 3/31/2008 8:07 PM (GMT 0)
Hi, I came off Prednisone about 3 weeks ago. In the first few days of coming of the steriods I also had the urgency feel, however for these days I used Colifoam which has stoped the urgency and I am feeling better then ever since I got diagnosed in June 2007. I strongly reccomend you get your Doctors to prescribe you something like this (better then going back on Prednisone). I have also lost the moon face look and I have started to loose weight. I do not eat any differently then I did before I got the illness, but I do always make sure I eat lots of fruit. Good luck!!!
Posted 4/1/2008 9:17 PM (GMT 0)
Went to dr today... he precribed me proctofoam and gave me 24 days worth of lialda samples... he said that i could call and they'd supply me with more since they get so many and since the insurance thing. He wants me to do more blood work too so that i can figure out why the f im so tired all the time.
Posted 4/3/2008 12:20 AM (GMT 0)
The fatigue can be anemia, especially if you were on Prednisone, so the blood test would pick that up. Just dealing with the inflammation tires your body out, so that could be it as well. I find even after being treated for anemia I still need a nap most days and really HAVE to get a good eight or more hours of sleep. I used to leap out of bed in the morning and do just fine on six hours or less ... oh well.
Posted 4/3/2008 8:01 PM (GMT 0)
Kara, congratulations and good luck with staying off prednisone, it
was a medicine that made me miserable. I ended up going with an
organic drink called Haldi, and have been off ever since, and the one
time I stopped with the drink, I flared again, I think it has something
to do with its anti inflammatory actions, etc.


-----------------------------------------------------------

yuckygut
diagnosed 1998
now off prednisone and colozal
drink 1 Haldi daily
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