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Posted 4/12/2010 12:43 AM (GMT 0)

blksteeda said...
I will say I was full of energy today despite the sore throat...I was up walking around the hallways and felt really good. Appetite is insane, probably as I think I mentioned earlier from the steroids. Word of advice, don't watch the food network when your starving and on a low residue hospital diet

LOL-I agree!! For some reason I watched a lot of Food Network in the hospital as well, and it was a bit tortuous!

I hope you get sprung soon-and I am glad you are getting some energy back! Just be careful not to overdo it...
Posted 4/12/2010 1:50 AM (GMT 0)
I hope you have success on this like alot of us have.  I started remi in July of 2009 and it has worked wonders.  I have my life back in alot of ways.  I do have a few reactions but nothing to bad.  I went from severe uc throught my whole colon to mild uc.  I only hope it gets better.  I wish you the best and the infusions really aren't that bad.  Hey, I look at it as a break from my kids loltongue
Posted 4/12/2010 2:24 PM (GMT 0)
Excellent! I hope the Remicade continues to provide you relief! I totally understand about being on Pred and starting to feel better. My last colonoscopy showed a clear colon; no polyps or ulcers. Also, I just had a blood test a couple of weeks ago, and my WBC was down to a 7; when I first started Remi it was at 13. Good luck, glad to hear you are improving!

Posted 4/12/2010 2:53 PM (GMT 0)
He's putting me back on the Colazal and Rowasa every other night. He doesn't want me back on 6MP as he said it will really make me too immuno-compramised. He already said I can taper the prednisone every 7 days by 5mg. From what I heard this morning my WBC count was great
Posted 4/12/2010 3:12 PM (GMT 0)
Good to hear things are going well for you Gordon!
Posted 4/12/2010 3:15 PM (GMT 0)
Yes, I was on Imuran and the doc took me off of it too. I'm not on any other meds right now but the Remi -- and continue to feel great. Oh, and you might have those aches from tapering the Pred. It took me about 6 months to actually feel like my old self again after tapering Pred; the moon face and aches finally disappeared.  

Posted 4/12/2010 3:24 PM (GMT 0)
One thing I am so thankful for is that I have been on Prednisone many times and never got any serious or visual side effects :knock on wood: I had a bit of depression on a couple occasions and my face slightly filled out but no moon face.
Posted 4/12/2010 3:27 PM (GMT 0)
That's awesome Gordon! So the other Pred stuff won't be too much of an issue for you....I think I'm a little vain in that I hated the moonface! Ha! I was so glad when that disappeared!

Posted 4/12/2010 3:31 PM (GMT 0)
my sister had horrible moon face many years ago before she had the J Pouch...she was on 100mg for a LONG time to try and control it...took a long time for her's to go away
Posted 4/12/2010 4:05 PM (GMT 0)
I dont get why y'all have had bendryl with remi? I was on humira for a long time and never had such a thing
Posted 4/12/2010 4:45 PM (GMT 0)
they only gave me the benedryl just before the infusion into the IV...it's just to control any allergic reactions I believe
Posted 4/12/2010 6:13 PM (GMT 0)
That's right.  Benedryl is just a precaution.  I'm always given Claritin before my infusions.
Posted 4/12/2010 6:37 PM (GMT 0)
Krissy-I was surprised too-I was on Humira for almost 2 years and never had benedryl or anything. Maybe it isn't as much medication? I am not sure. But they did watch me for over an hour after my first loading doses on the Humira-after that they didn't.

Gordon-I am jealous you don't get the moonface!! Mine is terrible, and my neck is thick, and I am so tired of my skin touching my other skin. Yuck. I can't wait to start deflating...
Posted 4/13/2010 3:58 PM (GMT 0)
Well, I still notice a bit of a minor sore throat, nothing too severe, had some congestion last night and this morning a bit of muscle soreness in the back of my neck around the back of my ears mostly and some occasions of shortness of breath. I'm scheduled for my second infusion on the 26th. My GI's office needs to get insurance approval for me to have the infusions done in their office...if not, I go to the hospital every time.
Posted 4/13/2010 6:38 PM (GMT 0)
I don't understand at all...my morning BM today showed small signs of blood after not seeing ANY after my week long stay in the hospital and my BM I just had showed even more blood...I don't know what's going on anymore
Posted 4/13/2010 10:39 PM (GMT 0)
     Gordon, call your doctor.  If you have shortness of breath, make sure you notify him.   
Posted 4/13/2010 11:00 PM (GMT 0)
I mentioned that to him in the hospital actually that I was having a tightness in my chest and my heart would pound harder but not in a fast racing way for my pulse never goes up when it happens. I have read that shortness of breath is a common side effect along with the tightness and sore throat which I'm still having. I truly wonder if just stress has caused me to bleed again? I'm closing on a house next monday and I have a ton to do and that is all I can think of. Being fine for five days then bleeding again the first full day back home makes no sense to me. This afternoon I started the probiotics again (VSL3), I'm sticking with the low residue for at least a few weeks and I'm going back on my Rowasa tonight.
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