Difficult Pred Taper Need Input

Back in June I started 6MP.  At the time, I started with 50 mg and was then on 15mg prednisone daily.  My doctor wanted me to stay at 15 pred for a month to give the 6MP time to get into my system.  For 6 weeks, I felt the best I've felt in a long time.  Almost normal bowel, etc.  Then I started to taper on the prednisone.  I tapered very slowly at 2.5 intervals for 2 weeks as I had been on prednisone for 8 months.  I was still okay at 12.5mg.  At 10 mg. I started having some bad days.  It was at that time that I increased my 6MP to 100 mg day per GI's plan.  When I upped my 6MP, my D became worse to the point where I was  going 10 times a day and it was water. 

Then I went to 7.5mg pred where I am at now.  The only way I can run my errands such as grocery shopping, etc. is to take immodium.  That will work for a day and then I have a day when it doesn't  I have an appointment with my GI on Oct. 4.  My questions are these:

Is the 6MP causing the D or is it the tapering of the prednisone?  I am worse now than before I started the 6MP and was just on the pred and the lialda, but my GI wants me off the pred.  I am miserable.  Any advice would be appreciated.

Are you still on the lialda, too, or just pred and 6mp?

I think you have the key question lined up. I would ask about how long the 50mg to 100mg switch should take. Or the total startup time needed for 6mp to kick in. There is some amount of time that the 50mg started working for you, so I would imagine the bump to 100mg doesn't kick in overnight. Is 100mg your ultimately level based on your body weight or are you going to go even higher?

I don't have the 6mp side effects with me, but in my recollection, every CD med I have taken, including 6mp, has a list of side effects that sounds very similar to CD symptoms. "This drug may cause nausea, D, C, vomting, headaches, fatigue", etc, etc.

No, I don't recall having issues with D while tapering off pred.

I would ask your GI if you could increase Pred back to 12.5 or 15mg. Once your BMs stabilize could you taper by 1.25mg. I know the docs push to get off Pred quickly, but sometimes our bodies have different ideas. Hopefully, your GI will have some answers for you.

Heya,

The pred roller coaster ride.

The pred conspiracy, three days of the pred, Final Destination pred, oh wait these are stupid pred jokes.

Ok 3 Years on and off pred for me, 20 mg a day, when tapering, same as everyone else, 2.5 down every two weeks.

Every year, every 3 to 6 months we try and taper, usualy with an alternate med, like entocort, remicade, pentassa, humira, now immuran.

Every year when I get to 12.5 I begin to get sick, intestinal pain, massive bloating (bowling bowl shape stomach when eating, after clearing my bowels over night, flat again, D begins). By the time I reach 10 mg the pain is so intense, eating is no longer an option.

I call my GI, he calls back a week later, says "Up your pred to 30 mg for a couple days then go back to 20mg"

I know he wants me off it, I know he is frustrated as am I. He knows how much pain I am in and even though he wants me off the pred badly, I just don't think

A) He can stand to watch me in pain, so continues the use of Pred despite it's long term effects

or

B) It may just be the only drug that helps me, that may just be the way it is for me.

Currently tapering again, this time though, tryng to counter with immuran.

Screwed this one up already, only been on immuran 2 months and got down to 12.5 mg Pred.

Backing up a little:

So I went to 17.5 pred for the first month (normally it would be every two weeks,, so now every month each 2.5,  but the gi wanted the immuran to kick in), then 15mg the second month ( again, strechting out the taper) Then started 12.5 just last Saturday, by Tuesday I was in so much pain, I did something some may consider tabboo, I upped my own pred back to 20 mg for wednesday and thursday. I am felling better. Now I will drop back down to the 15 mg pred I was at before saturday when I went to 12.5.

This could just be a simple math problem, my GI and I both underestimated the pred tapering catching me before the immurran kicks in, and as said before, It could be up to 4 to 6 more months before it makes a difference large enough to notice off pred.

This boat I am in, and I am trying so hard to follow the Gi's instructions, but this is a dance my GI and I are very familliar with, if it was "dancing with the pred" I would win that stupid mirror ball trophy.

Yeah, of course I am going to update my Gi that I cant get past the 15 mg mark just yet, and I'm pretty sure he will agree to extend the 15 mg pred longer to give the imurran more time.

11 years, no remission, pancreas inflamed again, dancing the pred and immuran at the same time, waiting on my next ercp in two weeks.

Yeah, pile it on baby! So yeah I hear ya. Maybe this time immuran will be the drug that gets me off pred, I just need to wait at 15 pred longer for the immuran to work, I hope.

Yes, to someones question above, the weight gain and loss while being on and tapering off pred is insane, 30 pounds each way per year, on avg.

Anyway, clearly I am hoping the right amount of tapering over the right amount of time while substitutuing the "other" drug will be the trick that works.

I have no illusions, I may end up on 20 mg pred forever, I don't know. I do understand the long term side effects, but for me, the daily side effects of being off pred are too horrible to endure, hence why we always go back to 20 mg.

So once again, like you, I wait for my "other" drug to kick in and am preying we can get the mg numbers right to get me off the pred and stable on the imurran.

Not sure if any of that helped, but I do understand.

Thanks

Jon

 

@minnietoty I gained 30 pounds on the pred when I started within about 2 months. Have had no more weight gain since then. Since starting the taper, my water retention is less than before so that is one good thing about the taper. Don't know what will happen yet if I increase my dose.

@ Blue Velvet It feels like I may be like you with this prednisone thing. Although last night I only took half my 6MP. I remembered that only a year ago I had never taken prednisone before and my D was never like this. It seems to have gotten worse and worse since starting and increasing the 6MP. I didn't have D this morning after only half my dose of 6MP yesterday. Am going to take half my dose today, too. Maybe I have found the culprit after all, but I know it's too soon to tell.

@cindywchrones Funny, but my joint pain has descreased on pred. When I get above 17.5, I have severe hip and back pain that goes away when I get to 15 to 12.5. I think that is the optimum dose for me.

Thank you all for your comments. The problem with this DD is that so many of the drugs we take for it also cause the symptoms of the disease that it's hard to tell if it's the drugs or the disease causing the problems. Sometimes I think the cure is worse.

@Tara28 Unforunately, I have not found any pain pills that I can take. I am listed as allergic to anything with codeine and also with tramadol as the side effects are so severe that I have to be hospitalized. I can take morphine via IV tube, and local novacaine for dental work, but anything ingested via stomach does me in except for Tylenol and nsaids which I can't take because of the crohn's. I am doomed for pain meds except my doctor says I can still try Fentanyl patches or a few others yet untried but not needed as yet.

Heya Old,

Sorry to jump your thread again, but Ha! Ha! Ha! (Like Ming The Merciless)

I mean that in the nicest way, I can not take any narcotics by mouth either, I thought I was the only one. I always chalked it up to weak stomach and my stomach erosion.

I have tried them all, vicodin, darvocet, percocet, dilaudid, morphine, fentanyl patch on and on.

People often say "It is like being sea sick", I respectfully offer another phrase, "It is like being drunk sick from your college days." you know, curled in a fetal position, near the toilet, preying and saying you will never do this again, just get you through this one.

I used to take narcotics, obviously, cause I just thought I would find the right one, preying for a different result, and it is always the same ( I believe that is the definition of insanity), throw up for hours, ya know, preying to God to make it stop.

I would rather eat the daily pain of crohns then ever take another narcotic.

Strangley, just like you, I can take narcotics in the er trhough iv, perhaps cause at that point Im already throwing up and screaming in pain, or perhaps cause they always pre-lace the narc with a some kind of nausea med.

I really thought I was alone on this, it sucks you have that to, pain sucks, I am very tired after 11 years of non-stop pain.

But still ticking :)

Sorry man

Jon

Post Edited (Blue Velvyt) : 9/29/2011 3:26:18 PM (GMT-6)

@ nicecupotea  I do take  Tylenol when I need to.  I guess  I didn't word that  too well.  I can also tolerate nsaids like ibuprofen, but I can't take them because of the crohn's.   

I guess I may be  wrong about the 6MP being the villain.  I haven't taken it for 2 days.  I went 24 hours without taking the imodium and  the water D is back again.  I guess  I will just  have to stay on the imodium until my GI appt on  the 4th.   

Thanks again for all the input.