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Back on prednisone...boo hiss

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Posted 9/25/2008 7:32 PM (GMT 0)
Well, it was short lived folks, but I managed to stay off the prednisone for a whoooping two weeks.  Will wonders never cease?  Bad symptoms started Sunday...several bms, bleeding, whole nine yards.  I try to suck it up and not go back to pred...watched diet faithfully, took all other meds...6MP, Colazal, Cort enemas and Canasa.  A tad better on Monday, pretty good on Tuesday, yesterday was a horror. Today had the blood actually dripping out my butt...urgency in addition to it.  Oh well.  Called the GI doctor he put me back on 40 mgm of prednisone for five days, then down to 30...you all know the drill.  I see him on the 6th of Oct.  Feeling a bit punky today.  We were down Atlantic City yesterday afternoon and scheduled to go to Borgata for tonight, a place I love to be, but guess it wasn't in the cards.  I HATE THIS DISEASE!!!
Posted 9/25/2008 9:03 PM (GMT 0)
i feel your pain.
Posted 9/25/2008 9:17 PM (GMT 0)
I'm sorry you had to miss your AC trip- I too absolutely love it there! Next time, next time...

Posted 9/25/2008 9:51 PM (GMT 0)
Ugh, I know that feeling :( Every time I've taken pred I end up back on it within the same month I stop, which is why I'm reluctant to start ever again. My new doc actually said I really need to be on pred to get this flare under control as it's obviously progressively getting worse, but I just can't do it. I FINALLY got rid of the pred-weight and moonface, I'm not ready to go back!
Posted 9/26/2008 3:26 AM (GMT 0)
Just wondering how long it took you to lose your prednisone weight and how did you taper? I am currently at 5mg and I am suppose to go to 5mg every other day. did you start flaring at a certain mg?my doctor felt like if I was going to flare I would have already showed signs;
Posted 9/26/2008 3:06 PM (GMT 0)
Guess I am the oddball.  I never gain weight on prednisone.  As a matter of fact, I lose weight.  Now that my heart doctor put me on a water pill, I will probably lose more.  He did that because my BP always skyrockets when I am on pred..  I already take two BP pills but the doc explained to me that pred makes your tissues retain fluid, therefore the increase in BP.  Maybe the doc can prescribe a water pill for you when on high dosage of pred?  It is only 12.5 mgm and worked wonders already.  My pressure was down to 122/66 this morning!   The pressure along with the inflamation put me in the hospital in May.  To tell you the truth, I was more concerned about the pressure...it was 216/98 and even my doubling up on the BP meds ..refused to come down.  Just make sure you have enough potassium.  I eat two bananas daily when on this water pill.
Posted 9/26/2008 4:15 PM (GMT 0)
I agree about the potassium.. I never had any problem with it before but on my last course of pred I ended up having to get a prescription for potassium supplements because it was WAY too low and even eating potassium rich foods wasn't helping. I was kind of freaked out. When I stopped the prednisone it went back to normal though. My sodium was also out of whack and I think that had a large part in the weight gain, so try to avoid eating too much sodium! I got to the point where I was reading the labels on everything before eating it- you'd be surprised how much sodium some things have!!

The weight came off gradually just from stopping the pred but I also tried avoiding sodium even after stopping and just watched my calories. It took maybe a few months to get back to where I was but it will come off.

Also, I think I usually started flaring at 10 or 5mg, but sometimes I'd be fine until about a month after stopping it all together and then the symptoms would return. This doesn't happen to everyone though so you could be in the clear, just try not to worry and hope you stay in remission! :)
Posted 9/27/2008 4:42 AM (GMT 0)
I'm only on 20mg per day of Pred, but I'm pushing to go back up because I'm desperate to stop the urgency and pain. The asacol is nice but it's not enough. The other reality is the food has to be basic, otherwise that Large Intestine isn't going to heal with all that 'traffic'.
Posted 9/27/2008 7:32 PM (GMT 0)
UC fighter,

     How long have you been on prednisone?

Posted 9/27/2008 11:16 PM (GMT 0)

Prednisone sucks!!!! I am no longer on it since switching to Remecade. *So far so good*

I can't beleve you don't gain some weight. Lucky...lets see last time I topped out at 140. Now i am back down to 120 =) All this weight loss came durring the summer and when i stopped prednisone. How i hate that drug!!!And i am still trying to regain my mind. *stupid* smhair   HoPe YoU get better. wink

Posted 9/28/2008 1:09 PM (GMT 0)
I weighed 141 at the beginning of this flare back in April.  With all the prednisone, only being off of it a total of 4 weeks total in six months, my weight is now 122.  The only reasoning I have is that I watch everything I eat, very little salt intake and I poop like six times a day!
Posted 9/28/2008 5:25 PM (GMT 0)
I have been on an off prednisone a few times over the past 3 yrs but even though I hate GETTING OFF of it, I can't lie and say i hate BEING ON IT. Its been about 16 months since the last time my doc put me on prednisone and I just started back on it last week (40mg/morning) and I have never had so much energy. I gained 3 pounds since then and have had the energy to run/workout/eat/go out and do whatever! I know its only a temporary fix but I might as well enjoy it while I can and just hope in the meanwhile the 6-mp will help (it takes 3months for it to work...)

For those taking 6-mp...does anyone else take Allopurinol to inhibit the TPMT enzyme?
Posted 9/28/2008 5:28 PM (GMT 0)
Allopurinol?  Never heard of it.  Doctor never mentioned it to me and I have been on 6MP for at least four or five years.  Sometimes I think we are just guinea pigs.
Posted 9/28/2008 7:35 PM (GMT 0)
well there is this enzyme TPMT that metabolizes the 6-mp into another chemical called 6-mmp. that can cause toxicity and will not enter the cells of the body. Allopurinol, which is normally used to treat GOUT inhibits that enzyme so the 6-mp can enter the cells of our body.
Posted 10/22/2008 9:19 PM (GMT 0)

Sorry Christine1946, I've been away...

 I've been off/on it (mostly on) for a year and a half. Right now I'm up at 60mg per day to control the disease and it's helping. Can't get the thing to go in to remission though. I may be switching to Imuran next month.

Christine1946 said...
UC fighter,

     How long have you been on prednisone?

Posted 11/5/2008 2:23 PM (GMT 0)
Looks like my days on Prednisone are numbered. As I mentioned above, it helps but not enough to go to remission. Looks like I'm going to be switching to Imuran. Yay, another drug to try and understand. (I hated Chemistry).
Posted 11/5/2008 2:33 PM (GMT 0)
HI,

     We were away too.  In the meantime, I went into remission..yaaaaaa!!!  Took my last 5 mgm of prednisone on Sunday.  Today is Wed and I am enjoying normal poops.  Ah...doesn't that just feel great?  No bleeding, no urgency.  This disease is soooo weird.  I am taking 75 mgm of 6MP.  My next GI appointment is Dec 13th.  It was scheduled for the 1st, but I have to have a blood test the first week in Dec and I know the doctor wants to see the results.  I have to mention to him about the Allopurinal.  But I really don't want to take another drug.  I noticed I feel more tired taking the 75 mgm than the 50 mgm.  I had my CBC done on Monday.  If it is out of whack, I am sure my doctor's office will call.

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