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Crohn's Disease
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Posted 10/18/2010 3:52 AM (GMT 0)
I have another follow up with my GI dr tomorrow. I don't know what to really tell him when he asks how I'm doing. I'm down to 5mg of prednisone, just started that Saturday night. My moods have leveled out (thank goodness!) but I am really feeling the exact same, if not worse, than when I started the prednisone. I don't think it helped me at all. Before he put me on it I was going about 3-4 times a day with semi formed stool, there was rarely blood, but I did have constant cramps. Now I'm going 6-10 times a day, 90% of the time it's watery D and there's been a lot more blood and the spasms have been more and more frequent, not to mention the sudden urgency (almost had a mess on a few occasions) and the cramping has been about normal, but really bad before needing to go. Only upside is I've had 3 days of energy when before it was maybe one day a month. I haven't lost weight, but have stayed the same.

idk what to tell him. I'm afraid he'll increase the prednisone dose and I really really really do not want to go through the emotional roller coaster again. I know you can have increased symptoms while tapering, but these symptoms have pretty much been since day one.

I believe our next step is to try Pentasa again, my insurance is going to start covering it so I will only need to pay 74 a month rather than the 300 or so.

Oh and now to top everything, my insurance is going up 100 a month due to decreased funding. We're already tight as it is, 300 a month for just my insurance is not helping things.
Posted 10/18/2010 1:01 PM (GMT 0)
Sgirl,

I think you should tell him just what you told us.  It sounds like your D has gotten worse as you taper, and that's not what you want.  Not to say that you should go back to a higher dose of pred, but clearly you need to find a way to treat the illness.  Personally I have had good luck with Pentasa.  I'm glad you're insurance is now going to cover it (I pay $200/month and I have great insurance - lucky you to only have to pay $74!) - you should absolutely use that insurance to cover this med if that's what your doc thinks will work for you.

{{{{HUGS}}}} and I hope you feel better soon.

Posted 10/18/2010 1:08 PM (GMT 0)
I agree tell him just like you told us. I think you need to be on some other type of med along with the Pred in order to adequately control your Crohns. Good luck!
Posted 10/18/2010 4:26 PM (GMT 0)
Not really appropriate or helpful to you so I apologise in advance :) When my son's consultant asks him how he is doing he aways says "Very well thank you, and how are you?" The look on the consultant's face is priceless :) During the drive to appt I always recap with son what has been going on, as, if it hasn't happened in the past week he forgets about it but he still claims to be 'very well' regardless. One day.........................
Posted 10/18/2010 11:57 PM (GMT 0)
Well he's not happy that I didn't get better while on it. He wanted to put me on cipro and flagyl again, but told him no since I had such a bad reaction to the flagyl last time (could not move and was very weak) So we are going to do Pentasa until the beginning of November, if I'm not feeling better by then we'll start paperwork for Remicade. If I don't have improvement by the end of this week he wants me to up my dose of prednisone to 20mg to help kick start the pentasa. He also wants me off the Sulfasalazine. Let's see how this goes.
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