It was all going so well until today

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

drew_wymore

drew_wymore

Joined
Nov 15, 2007
Messages
1,806
I've been on the regulan for close to a month now and on a pred taper and things were going great until today. I woke up in the middle of the night and threw up grrr.. I'm feeling crampy, nauseus and just all around shitty today. I'm hoping its an anonomly and isn't a precursor of things to come. I'm not sure if its the regulan thats helping or it was the pred that was helping the whole time being masked by the imuran side effects ... :ybatty:

I'm at 10mg right now down from 60mg on a pretty quick taper. I know the last time I came off the steroids I got sick within days. I'm just hoping thats not happening again.
 
I just had a discussion yesterday with my doc about tapering the pred a little quicker due to all my sides (he wants me off badly too), he wants me to go from 2.5mg decreases every 7 days to every 5. This puts me at 0mg as of 4/28/08....I asked him how much the average body produces normally, he said 7.5mg. As you approach it the body will start to "shift" things as it senses the taper more.

Hope this is a fluke and it'll pass Drew.
 
Last edited:
Best of luck Drew. I hope it's just one of those days and not a one of those long times if you know what I mean.
 
Hey Drew! Sorry to hear you're not feeling well today. I hope that your situation is just a fluke. I had a day like that Monday...fingers crossed for ya!
 
Thanks Amy and Lisa. I hope you gals are doing better yoursevles. I know you were having a hell of a time Lisa. I hope everyone gets better. I get some friggin mad when this happens. I was actually feeling like a human being again.
 
Its going downhill folks =( I spent a couple hours last night having the worst cramps I think I've experienced since I've been sick. I'm better now but it feels like I've been doing situps which would be fine if I actually had done them.
 
:( sorry to hear you're having a bad time drew. maybe you could have a word with your consultant, see if he thinks you should continue with the meds regime you've been on. or - maybe its a stomach bug? is there anything going around where you are?

whatver it is, i really hope it passes soon.
 
Aww Drew, this aint fair is it? There are times we would love to kick crohns were it hurts!

Thinking of you. Truly hope things pick up.
 
Drew... Everytime I tapered off pred, seems the withdrawal sypmtoms were way worse than the time before. It could be a pending flare, or it could be withdrawal symptoms... or a mixture of both. Last time they started even before I was off of the pred completely... It evened out/settled down AFTER I got off the pred, but I was in way worse shape OFF the pred than while on it, and I maxed out at 40mg.

you've been up to 60mg, and tapered fast. I was told, and experienced, that any Imuran issues stopped within 48 hours of ceasing to take them. So, I don't think the Imuran is playing a part. I don't have any experience with regulan. I wonder if, between all 3, there are some potential interactions to watchout for.
 
Kev -
Yea I'm thinking it has to do with the pred. I'm pretty sure its not the imuran. I don't think the regulan is playing a part other then not helping much. I'm hoping things will settle down here quick enough. I put a call into my GI to see what he thought about it and I'm waiting to hear back.
 
I thought I read somewhere pred withdrawal and flare up symptoms are sometimes very similar in some people, but I can't find where I saw that. I am getting very close to my time off pred, I've got about 3 weeks and I'm scheduled to be at 0mg. Going slowly according to the dr, as I expressed concern about re-flaring. He's fairly confident in the Remicade taking the wheel from here on out though...

Hopefully it's nothing, just Crohns being Crohns Drew, lets see what the GI says.
 
Welll, I went thru serious pred withdrawal the last time. Felt really, really 'EXTRA' tired... felt down, depressed... Thought at first it was the beginning of a flare.. My GI thought otherwise. We compared notes, and upon examination, none of my 'key' IBD symptoms (those unmistakeable ones) had increased at all. That is what led to the 'conclusion/detemination' that it wasn't a flare, just pred withdrawal of a high magnitude... Vs pred side effects or bad reactions.
I dunno if that clarifies it, or whether that's a hard/fast definition/distinction. Its akin to trying to determine whether one is in the begining/midst of a flare; or if one is 'catching' a bug or something. In my case, my IBD didn't get worse, AND I didn't catch a flu or cold.
 
I'm thinking its the pred withdrawal symptoms now. I'm feeling much better today although I haven't eaten yet either. I saw the GI and he's keeping me on the pred taper yay. I'm taking an antispasmotic though now which has actually helped with the cramping I was having. I plan to see him in a month which will be 2 weeks pred free to see how I'm doing.
 
Thats good to hear Drew. I found the antispasmodic has helped me too. Good to see you have a plan you are happy with too.

Hope all continues on the upward trend for you. Thinking of you.
 
What's the name of the antispasmotic Drew?

For what symptoms I am thinking of, I've got Bentyl (Dicyclomine) that was started in the hospital.
 
I hope you are still feeling a bit better Drew - interested in the thread as I am torn between a plummet taper advice given yesterday to me and a slpw taper advice given to me a week ago but this helps me think a slow taper is better. I never knew pred tapering could mimic the symptoms. Learned something new again, there you go.
feel better!
 
It seems to be up and down and up and down. Just as I think I'm starting to feel better things take a step backward. I'm doing alright today but not great but better then last week.
 
That's how it is with me too Drew, tomorrow night I am officially down to 7.5 mg pred...the only way I can think to gauge things, and even then it's hard, is to monitor how long it goes "up" and how long before it goes "down" again. How much good is mixed with any bad, or something along those lines....
 
I do the same thing Benson. There are better days but its weird just as I string 3 days together I end up in really bad off, then the next day I'm fine argh. I'm down to 5mg of pred myself now and anxiously seeing how i react after I'm fully off it.
 
Well, not to alarm anyone, but it sorta sounds like what I was going thru this time last year. On my diet, med & supplement regimen, I was doing fairly ok up until Nov 06. Then it all stopped working... not in one cataclysmic event, in a gradual process... Like, I'd be ok for a week, then flair for a day, with little/no warning. It would pass, things slowly improve... then I would flare again, this time for 2 days. Everytime I flared, I'd lose a little more of the ground I gained, AND my flare would last just a little longer.. Then there was a year (more/less) of pred.. Every taper off resulted in a bigger flare... I was going downhill at a slow, steady pace... and in partial denial. My doc and I had a 'realistic' talk, and thats when we started exploring AZA... Fast forward from there to LDN. I think it's another benefit of keeping a diary... Sometimes, one can fool oneself to thinking..."it's just another brief setback, things will turn around". But, when you can look back, start comparing notes, durations, extents, you get a better picture of whether you are trending up, staying level, or sliding way downhill.
 
please help

:I have started reducing my pred 5mg a week and am a bit worried because i was dxd with shingles a couple of weeks ago, (this is the second time i have had it in six months)and am going thru a pretty hard time with it as it is on my back this time, i am concerned it will get worse by red pred., and was wondering if many people have problems with there back. i have been doing some research and found that some people with crohns do suffer with bad back problems as i have and never been able to find the problem with it PLEASE HELP !
 
Last edited:
I've been tapering over the past 4 months from 60mg to 40, 20, then 10. A couple of weeks ago I just quit taking it at 10mg. Fatigue was the worse thing I experienced and increase in diarrhea.

Let us know how it goes Drew, I'm wondering what else I may be experiencing that I'm not aware of.

jodes-- I've had acne on my back while taking prednisone but not to the degree of shingles.
 
Sojourn, when you speak of those pred withdrawal symptoms, the worse D and fatigue, at what point did those subside (or did they?)

I'm REALLY noticing fatigue, I'm down to 7.5mg, the level the dr. said the body produces a day normally, but for a week or two have been seeing fatigue issues, although it's slightly welcome after not being able to sleep for 6 months (still wake up couple times a night from "D" but still....)
 
Hey jode.. I don't know if I'm atypical; but pred actually cleared up all my skin issues while I was taking it... dandruff went away, dry itchy patches on my legs too. And a little acne on my forehead that developed with the crohns went away as well. As soon as I tapered off, all of them came back, with a vengence. Go figure
 
Kev, I have psoriasis really bad and while I was on pred it went completely away. That of course was the only good thing that happened while I was on pred. Once I was off it came back full force. Luckily methotrexate is helping but not quite gone yet.
 
BWS1982 said:
Sojourn, when you speak of those pred withdrawal symptoms, the worse D and fatigue, at what point did those subside (or did they?)

I'm REALLY noticing fatigue, I'm down to 7.5mg, the level the dr. said the body produces a day normally, but for a week or two have been seeing fatigue issues, although it's slightly welcome after not being able to sleep for 6 months (still wake up couple times a night from "D" but still....)
Click to expand...


The fatigue was really bad for about a week after I stopped. It's leveling off now. I'd thought the Humira was working, but kind of interesting that the D started coming back once I quit the pred. I didn't think 10mg of pred could have that much of an impact though.
 
I tried going back to work and managed to make it 2 days this week. As of today I'm officially off pred but I've been exhausted and the D is back again ugh. The regulan *seems* to help with the bloating but I don't know yet since I haven't had enough time off the steroids to know for sure what the deal is. I'm so frustrated right now. :voodoo:
 
5 a day

I did a pretty aggressive taper

60 one week
50 one week
40 one week
30 one week
20 one week
10 two weeks
5 two weeks
 
hey Drew... Any particular reason for the 2 weeks at 10, then 2 weeks at 5 versus keep dropping by 10 per week? Was that based on dr's recommendation?
 
Yep that was the doctor's recommended taper. I thought it was odd too but I think it was because they messed up once before and never gave me a taper schedule and I went from 20mg to nothing and got sick (in fact I posted here about it) since I didn't know it would be a problem until you all clued me in that it was.
 
Hmmm, what has me wondering is the hiccup at 10.. then at 5. i'm wondering if there is some clinical or anecdotal info about withdrawal kicking in at that level, or if the doc was just slowing the taper... anyone out there got info/clues on this??
 
The body naturally produces about 7.5 mg of the "prednisolone" equivelent (prednisone without the "L" in there is the pill form, the "prednisolone" is the version the body converts the pred we all take/took into), so once we get especially low, and especially around the 7.5 range, it's recommended to really ease into it as that's the level the body should recognize a "dip" in what would normally be produced. Drew's doc seems right on, the hiccup is between the 10 and 5 because 7.5 is there too.

That's the threshold that the body says, "well this artificial crap that WAS here was at a much higher than normal level, that's why I shut down... NOW, it's lower than the amount I was producing it for him/her, I better turn the gears and get the factory going as it looks like I am re-employed".......

That's the concept that was told to me in an in depth discussion about it with my GI, and that I knew of somewhat because I encountered loads of anabolic steroid info while reading about bodybuilding (even though different 'roids and I am natural)
 
Good info Benson. I'm getting more and more energy each day which is good. I'm just trying to get the backne and other assorted sides to go away now.
 
Sweet news Drew. I hate that fatigue, I can't even sleep through a night, now my body wants a longer night? I've always had backne, it either was decent, or worse, the milia is much more prominent than the backne.

This is sorta random, but you look in your pic EXACTLY like my figure drawing teacher I had in 2001, Bart Woodstrup. I don't know why I now mention it, since I've thought it every time I saw your pic. He was funny, and a good teacher.
 
I don't know either... are they a crohnie singing duo? (and there are no 'stupid' questions - altho some of us are prone to crohn smart ass answers - yet isn't that somehow quite appropriate?)
 
'Backne' is a slang term originating from the merging of "back" and "acne", it simply means acne on your back. Like 'Billary' (Bill and Hillary) or 'Bennifer' (Ben and Jennifer)...pop culture literary creations.

Milia is that crap I have all over my upper body I did a thread on in the Gen. IBD forum like a month ago, they're tiny cists that generally don't go away and often need to be manually drained/removed. They look like the bumps on raw chicken skin sort of, or goosebumps (but a little bigger).

Both are massive issues I have, as I know I shouldn't, but I'm very judgemental about my appearance (but not really of other people's, it's because I feel that's how I get judged on first impressions, people are shallow and cruel many times, lets face it, it's true)
 
Aha, learned something new today - thx!

As for first impressions, I think you're right, but at the same time, the people that turn out to be worthwhile will allow you a second (and third...,) chance to 'impress' them.

I do find that since i've been ill, i spend more time on my appearance and how i dress. I'm usually not that bothered, but at the moment it makes me feel more confident if i make an effort to look nice.
 
BWS1982 said:
Sweet news Drew. I hate that fatigue, I can't even sleep through a night, now my body wants a longer night? I've always had backne, it either was decent, or worse, the milia is much more prominent than the backne.

This is sorta random, but you look in your pic EXACTLY like my figure drawing teacher I had in 2001, Bart Woodstrup. I don't know why I now mention it, since I've thought it every time I saw your pic. He was funny, and a good teacher.
Click to expand...

I get that a lot, I always look like someone's counsins brothers friend! I suppose that I have yet to meet someone who has said yea you look like somebody I know who's a complete douche :lol:
 
Well, if someone did think that I think it'd probably stay in their head, else you'll think THEY'RE a complete douche, lol

I actually get told I look like a couple people, including but not limited to Jake Gyllenhaal (sp?), Tobey Maguire, Adam Levine, Eddie Kaye Thomas, Tom Welling (when I had that shaggy surfer hair a few years ago)...

Not often someone comes up to another and says hey you remind me of that rapist I saw on the news.
 
Yeah, not so good if they say.. "Didn't I see you on America's Most Wanted?" I get the occasional Kenny Rogers comparison.. (which I neither see nor appreciate). And someone sent me a clip on Youtube of a UK TV Gameshow host (OK, so I see a little resemblance there).. I have, on several occasions, been told that I have a 'double'.. I've only ever met/knew one.. Tho no relation at all, this fellow and I bore an 'uncanny' resemblance to each other.. as long as we weren't standing (I'm about 1/2 foot taller). He frequented a bar where I worked.. One day, a regular walked in, waved to this fellow N called him by name, turned 180 degrees and saw me, and did the craziest double take I've ever seen... It was hilarious. Poor fellow thought he had the DT's..
 

Similar threads

thike1966
Little things don’t always matter
Replies
1
Views
151
scottsma
scottsma
V
My Novel, Pain in My 🍑
Replies
1
Views
4K
valleysangel92
valleysangel92
P
Can i test my gallbladder at home?
Replies
5
Views
1K
paddywack
P
D
Questions to ask GI
Replies
21
Views
13K
dynamo83
D
K
Any suggestions? Rough medication past, not sure where to go next
Replies
16
Views
2K
onolox
onolox

Latest posts

Back
Top