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Ashworthml
Regular Member


Date Joined Jan 2010
Total Posts : 222
   Posted 2/9/2010 2:03 AM (GMT -7)   
I had a flare up a couple of weeks ago and was put back on the prednisone. I went down to one tablet a day (5mg) and now I am off them this week. Whilst I was on the one tablet, I'm sure my flare up came back again, but not as harsh as the start, and now I am off them I am starting to run to the loo again, and keep getting pains, Is it normal after reducing steroids and coming off them to feel this way, or should I still be on a maintenance dose for the time being?? When I was on the steroids and all the other medication I have never felt better in 2 years when the dose of prednisone was at 20mg!
Michelle 40 years old
Diagnosed with CD 2004 (undiagnosed correctly +- 3 years, wrongly diagnosed with IBS)
Bowel resection 2005
medication: pentasa 500mg , Co-codomol 500mg/32mg codeine
loperamide 2mg (prn - take as many as 10-20 a day)
calcium tablets
Ferrous sulphate(anaemia)
levothyroxine (thyroid)
questran light (3 sachets/day)


macmommy
Regular Member


Date Joined Feb 2010
Total Posts : 34
   Posted 2/9/2010 4:38 AM (GMT -7)   
The same thing happened to me when I went off the Pred. Symptoms came back but not as strong as they were. I lasted about five months before it got really bad again, and that's where I'm at now. The doctor warned me that I could relapse when I stopped the Pred.

sickandlucky
Regular Member


Date Joined Oct 2009
Total Posts : 253
   Posted 2/9/2010 5:22 AM (GMT -7)   
I'm down to 3 a day/15 mg, started at 8/40 mg... I am so worried it's going to come back when I'm off in 6 weeks. Please keep us updated and I hope this is just an adjustment thing for you! Feel better!
female 19, diagnosed crohns december 2008
entocort/pentasa previously, now prednisone & imuran, probiotics, calcium w/d3, biotin, folic acid, zinc, omega 3s, digestive enzymes & prenatal multivitamin


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/9/2010 7:54 AM (GMT -7)   
Are you on anyother type of Crohns meds? Usually the docs will put you on Pred until the longterm med kicks in. You really should be taking some type of maintainence med all the time. I see you are using Pentasa, maybe its time for something like Imuran or 6mp. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Ashworthml
Regular Member


Date Joined Jan 2010
Total Posts : 222
   Posted 2/9/2010 8:07 AM (GMT -7)   
The only maintenance drug I am on is Pentasa, except for the questran light which I take before meals and the other vitamins etc.
I have been on Pentasa since I was diagnosed with CD , I keep thinking maybe I do need a change in medication, I know there are some I can not take, I tried azathioprine, which I had to come up as it affected my LFT, which I had to have every week whilst on it.
I am only on the steroids when I have a noticeable flare up, this is the first time I have been on prednisone for over a year, last time I was on it, it was a bigger dose, tapering down a lot slower than now as well, I dont know if that is maybe why I am having the reactions like I am as well.All very confusing at the moment, I dont know what to do for the better.I dont want to have to stay on prednisone for a long period of time but it seems like it is the only thing at the moment that has managed to stabilise anything, because when I was just on the pentasa and all the other meds, I was still running to the loo with urgency basically everyday and numerous times a day.
Also I'm not sure what the doctors are like here in regards of medication, I know they dont like paying out the costs of some of the medications and I think that Pentasa is one of the cheapest in the UK, which doesn't help!
I am however, going to the doctors on friday this week to get the results of my blood tests for this week, and I am going to ask her to refer me back to the gastro specialist as Im sure they know more and would probably be more likely to change my meds if they feel it is needed as well.
Michelle 40 years old
Diagnosed with CD 2004 (undiagnosed correctly +- 3 years, wrongly diagnosed with IBS)
Bowel resection 2005
medication: pentasa 500mg , Co-codomol 500mg/32mg codeine
loperamide 2mg (prn - take as many as 10-20 a day)
calcium tablets, multivitamin tablets, Omega 3
Ferrous sulphate(anaemia)
levothyroxine (thyroid)
questran light (3 sachets/day), 3 monthly B12 Injections


Iram
Regular Member


Date Joined Jul 2003
Total Posts : 145
   Posted 2/9/2010 8:58 PM (GMT -7)   
Hello all,

I have been on and off prednisone for 3 plus years, only thing that works for me, I got on remicade last october; only 4 months and I am not getting much out of it, because it I am currently having a big flare and I had to bump my pred to 20 mg, I had gone to as low as 5 mg on alternate days in December. I am totaly dependent on Pred to keep CD in remission. Nothing else works, since I have diffuse inflammation surgery is not an option in my case. I have asked to doc to bump my remi dosage and probably space it every 6 weeks, let us see if that works. I am allergic to immuran; Pentasa, I am on it, but it is not one bit effective. Pred is doing a number on me, but it keeps me away from the emergency room for now, I am not sure what will happen in the long run.

The lowest I have been on pred is 2.5 mg.
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