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Looking for Answers about UC and Prednisone...Any advice helps!
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Ulcerative Colitis
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James77
New Member
Joined : Jun 2012
Posts : 12
Posted 6/8/2012 3:30 PM (GMT 0)
I was first diagnosed with UC in April of 2011 and I am looking for answers from fellow UC sufferers as I cannot seem to get the answers I am looking for from my GI doc.
Had a colonoscopy on April 21st 2011, which showed mild, mostly left-sided Colitis and no polyps. After my diagnosis in April of 2011, GI doc prescribed Asacol HD. Flare cleared up in 3 days but then started flaring again in a month. Medication changed to Balsalazide Disodium 750mg (Generic Colazol) x6 per day. Again, this med cleared up the flare until October 2011. Experienced a flare for 2 weeks. GI doc upped Balsalazide to 9x per day. Flare cleared up and was fine for 7 months until May 15th, 2012.
Current flare started with bloody stool, however I was only having 1 bowel movement per day (In the morning). After 2 weeks, symptoms were not going away, but not really getting any worse. At this point, I contacted my GI Doc and he immediately prescribed 40mg Prednisone for 7 days then taper down 10 mg every 7 days (40mg x 7days, 30mg x 7 days, 20mg x 7 days, 10mg x 7 days). At first, I thought this seemed a little excessive considering I was only having 1 or 2 bloody bowel movements per day and I had never taken Prednisone before. I spoke with my family doctor, who also has UC, and he too thought that may be excessive. So I held off a couple of days and continued to take Balsalazide and high doses of VSL#3.
2 days later I started to develop high fevers during the day that would brek with night sweats every night along with painful joint aches(knees, ankles, elbows) and my bowel movements started to increase to 3 or 4 per day. So I caved in and started taking the Prednisone 3 days ago. I take 40mg once every morning at 9am. Today is my 4th day and I have seen no improvement which really scares me because it seems everyone else sees improvement immediately. I currently am experiencing bloody bowel movements that wake me up about
4 or 5am and will then have 2 or 3 more bloody BMs until I take the Prednisone at 9am. I am usually OK after that until it all starts over the next morning.
Any advice helps. I really appreciate having this forum to converse with others going through what i am going through. I was afraid to start the Prednisone, but I am petrified of the next steps after that (ie. Imuran or Remicade). Please let me know if I am over reacting and should give Prednisone more time or if i am right to be worried that it doesn't seem to be helping.
------------------------------------------------------------------------------------------------------
34 Years old
Diagnosed with UC in April 2011.
Currently taking Balsalazide Disodium 750mg 9x/day, VSL#3 Capsules
Prednisone started 6/5/12 at 40mg
fruitgirl
Veteran Member
Joined : Feb 2009
Posts : 7164
Posted 6/8/2012 3:35 PM (GMT 0)
I think you need to be on rectal meds (preferably mesalamine enemas) and should have tried them LONG before you started pred, given how mild your symptoms were. It's definitely NOT too late to add the rectal meds, but it is too late to stop taking the pred cold turkey.
Jay79
Regular Member
Joined : Jun 2011
Posts : 183
Posted 6/8/2012 3:42 PM (GMT 0)
James77,
Sorry to hear about
your recent flare.
As far as your high fevers, night sweats, and painful joints, those are all common side effects of Prednisone. If those are the only side effects you are experiencing, you should count yourself fortunate.
I do agree that jumping on Prednisone when you were only have 1 BM per day seems a bit hasty. I would have thought a prescript
ion for cipro would have been more in line. That's what I was prescribed for my first flare which was comparable to what you are currently experiencing.
For me it takes Prednisone up to a week to start kicking in, just remember each of us are different and we all react to medications in an individual way.
Are your BM's long and thin? If they are then your colon is inflamed, Prednisone helps to bring down that inflammation.
Keep taking the VSL, and might want to try a low residue diet for a period of time. Reduce your gluten and dairy products as they are know to cause inflammation. Keep away from red meats, raw foods and especially fried greasy foods.
kazbern
Veteran Member
Joined : May 2010
Posts : 8384
Posted 6/8/2012 3:43 PM (GMT 0)
ITA w/fruitgirl. Sorry you are struggling and I hope you feel better soon.
sherbear46
Veteran Member
Joined : Jun 2011
Posts : 3316
Posted 6/8/2012 7:04 PM (GMT 0)
Yep yep rectal meds should have been prescribed before the stupid pred. I hate that doctors just rush to the pred. I can understand the need for it but I would try everything else before taking it. And by the way, not everyone feels better fast from taking it.
Christine1946
Veteran Member
Joined : Aug 2008
Posts : 5988
Posted 6/8/2012 7:58 PM (GMT 0)
I agree with above posts. Ask your doctor about
Rowasa and/or cort enemas.
kdragon9
Regular Member
Joined : Feb 2012
Posts : 97
Posted 6/8/2012 8:22 PM (GMT 0)
It took just over 3 weeks for prednisone to start working for me. I tapered off completely by 2 months. Definitely get on rectal meds and don't start tapering down pred until you see improvements.
Pluot
Veteran Member
Joined : May 2012
Posts : 2500
Posted 6/8/2012 8:36 PM (GMT 0)
kdragon9 when you say it took over 3 weeks for pred to start working, do you mean until you started to see any improvement? Or until you saw significant changes?
kdragon9
Regular Member
Joined : Feb 2012
Posts : 97
Posted 6/8/2012 9:06 PM (GMT 0)
When I started pred I was having around 7 bms/day, lots of blood, mucous, urgency. I didn't see any improvement until 3 weeks. First blood lessened, then frequency decreased from 7/day to about
4/day. I stayed on 40mg for a few more days til blood was totally gone, then went to 30mg for a week, then 20 for a week. I dropped down to 10 and had traces of blood so I went back up to 20 for another week. Tapered by 5 mgs ever week after that with no problems. I feel lucky, but I never had any side effects from the prednisone.
Pluot
Veteran Member
Joined : May 2012
Posts : 2500
Posted 6/8/2012 9:12 PM (GMT 0)
Thanks for sharing!! That is so helpful to hear. It seems like most people see immediate results on pred so it's helpful to hear it may still help me yet :)
sunflower8
Regular Member
Joined : Nov 2011
Posts : 164
Posted 6/9/2012 12:12 AM (GMT 0)
Everyone is so different. Agree with those above - try the rectal meds. If it comes to it - Imuran is not a death sentence. Keep working with your GI and you'll get it figured out.
ManhattanMama
Regular Member
Joined : Jan 2012
Posts : 450
Posted 6/9/2012 12:59 AM (GMT 0)
Hi James,
I started having a mild flare in November of 2011 and I continued with my Colazal (2pills/3x a day) and started on Cortifoam. Things slowly got worse. I moved to Cortifoam 2 times a day. Still got worse. Within 2 weeks things went from 2-3 BMs a day with fatigue and some cramps to 25+ bloody BM with pain a day. I started on 40mg of Prednisone in January and stayed there for 8 weeks before I saw enough improvement to start tapering. I also started taking mesalamine enemas nightly. After all of this it took me almost 5 months on Prednisone before I finally resigned to the fact that my disease was no longer manageable by rectal meds and prednisone. I changed GIs and decided to go on Remicade.
The very next day after my infusion the bleeding was gone. After my second infusion I actually started to feel like I had my life back. I am now on 6mg of Prednisone and continuing to taper by 2mg every 5 days until I am done and I can't wait.
The reason I am going into all of this is because the disease takes a different path for each person. Yes the first line of defense is rectal meds and then prednisone and I hope that it works for you. If you do not see improvements within 3-6 weeks please consider other options with your GI. I waited too long hoping for the pred to kick in and I was in denial refusing to take any kind of immunosuppresant.
One note: tapering by 10mg every 7 days seems like a big drop. Most people taper by 5mg until they get to 10mg and then by 2.5 or less. If your symptoms return you may want to try a slower taper.
Good luck and keep us posted on your progress.
James77
New Member
Joined : Jun 2012
Posts : 12
Posted 6/10/2012 12:12 AM (GMT 0)
Thanks to everyone for your thoughtful and insightful responses. It really helps being able to communicate with others going through the same thing I am. I look forward to spending a lot of time on the forum, it's a great help.
Peace&Harmony
Veteran Member
Joined : Jul 2010
Posts : 1155
Posted 6/10/2012 3:05 PM (GMT 0)
I didn't start seeing improvement with Prednisone until I added Low Dose Naltrexone and started tapering. For some it works right away..for others it's a delayed reaction. I would stick to the prescribe taper as the longer you're on Pred the harder it is to get off of it. I was told to stay at 40mg until all my symptoms were gone...well 5 weeks later I'm still at 40mg and my doc (from Mayo Clinic) ordered me to taper as I was on it too long at a high dose. Now 1 year later I'm on my 3rd taper to try and get off this stuff!
Hopefully you can learn from my experience.
TroubledTurds
Veteran Member
Joined : Jan 2004
Posts : 8717
Posted 6/10/2012 3:50 PM (GMT 0)
i would assume the quick taper has to do with the relatively short duration - i think the longer you're on a drug, the longer and slower the taper - just my thinking -
also, like everyone, + rectal meds -
good luck -
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