Prednisone question

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BWS1982

BWS1982

Joined
Jan 8, 2008
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I just thought I'd like to get an idea of the consensus on those who did taper off pred and see how long the horrible sides took to subside. More importantly though, did you have to actually stop the pred completely to see a difference, or just get very low on it (sub 10 mg/day)....I was on it for 6 weeks in 2006 when first diagnosed, but not long enough to see any major sides...now I've been on it for over 5 months.

Sides I'm speaking of include (but are not limited to) hair thinning/loss, acne/milia, racing heart, sleeplessness, appetite, joint/muscle issues, and the worst one MOON FACE/SWELLING OF THE CHEEKS....

From most of what I've seen, seems to be a few weeks and most sides have subsided
 
I tapered off very quickly when I was on it. I was only it it once though and I have heard that the second taper is much worse.
 
I am tapering right now - just down to 30 mg, from 35, previously on 40 for 6-7 weeks and 50 for 2 1/2 weeks before that. No noticeable side effects are gone yet, and I, only after about the 5th week at 40, noticed the swelling (although my mum says I look way less gaunt and finds it positive), but the other things - heart races (esp when I go to sleep),, night sweats, *hot flashes* and incresed joint pains ( I have previously unrelated joint issues so it's hard to day if they are aggravated by the pred), and sensitive teeth have been there since day one. No appetite really changed, but I am force feeding myself cals or I drop weight really fast and have some wacky other issues, but I have managed a gain of 10 lbs over the time - and it all came back on the tummy.

My biggest issue is that even at 30, I am having a lot more pain again, and while I know I need to taper (I want to for sure!) for upcoming surgery too...I am becoming a strong believer it has masked oh too well my symptoms, and possible worsening condition of late....I never got rid of the pain entirely for sure but even at 30, it seems worse than it should be.

Good luck!
 
My mom and others feel that way too, makes me want to kill someone, I mean about the swelling cheeks having a "healthy, full" look....no people it's bloating and it's horrid and I want to die because I look like a chipmunk hording food for the winter ahead.
 
I was on 40 mg a pred for about 6 months. Then I tapered off of it for about 3 months. I've been off of it for about 3 months now. After the first month, the face swell, bloating, and moodiness was pretty much gone. However, 3 months pred-free, I still have acne. Given, it is much better than when I was taking the pred, but is still much more than I had ever had before.

Next time I have a flare, I am going to try entocort instead. I really can't stand the side effects from pred.

-Greg
 
Hi, Ive been on and off pred loads of times. once i was on it for over a year, and almost unrecognisable coz of my face. I absolutely HATE having a moon face so i know how you feel. I think the longer your on it, the longer it takes to go down. But as soon as your stopped completely you'll definately notice a difference within a week! Good luck!
 
Very refreshing to hear how it reverses after a bit....I get these looks from people who haven't seen me in a while, and I guarantee you they think I got fat. One person even told my gf they thought I got fat. :ymad:
 
Let me know who said that and I'll fight them for you.lol

I also hate the puffiness you go through on pred. There has to be something else
 
It actually was my gf's sister, I was ranting to my gf about how I feel like Jared before Subway just because my face looks like a beachball, and I mentioned to her that I'll bet her family thinks I got fat, she told me her sister thought I got fat but my gf corrected her. I can always tell when a person notices the cheeks, they do the double look, or they stare and look at me like I have ET's head growing out of my neck.
 
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I remember that look. I'm so happy I have not had to be on pred in such a long time. I'll be praying for you.
 
Hi Benson,

Best way is to reduce gradually with having been on the pred for several months. Your adrenal glands need time to register the drop in cortisol so they can produce it again. In other words they need to wake up!

Hang in there things will improve as you come off them.
 
yeah I know, it's only temporary, that's what keeps me going...I just fear my body will retaliate once I get low enough, like it did in November last year...and I know that Tammy has had bad luck trying to get off pred...
 
I have had some awful times getting off of steroids. I would recommend that once you get down to 10 mg that you take it very, very slow. 5mg for one week, 4mg for one week, 3 mg for one week, 2 mg for one week, 1 mg for one week.
I was told that your body naturally produces about 1-2 mg so that last step is very important. Your body needs to realize that it needs to start up it's own production of crotisol again.
If you notice joint pain and muscle aches you may want to go back up to your former step and try the process over a greater period of time.

Amy
 
I think one HAS to differentiate between crohns symptoms increasing due to a taper OFF pred Versus side effects or pred withdrawal due to a pred taper.

If your crohns is worsening, then you (your doc) will probably ramp up the pred, then re-try the taper approach... perhaps on a slower, prolonged basis.

but if its just the side effects... or bad pred withdrawal (I've experienced all of the above) then continuing the taper is your best choice, even if it means you may have to slow the process... or just plain suffer thru it. These decisions are best made in consultation with your prescribing doc..

I have noticed (purely anecdotal) that pred had lesser effect on me on any subsequent rounds of it; and it was harder to taper off w/o problems/issues
 
ive been off the preds for about a month now and pretty much all of the side effects have gone. it took me 2 attempts to finally get off the steroids but i was determined to do it this time even though my symptoms got quite bad. i know all about the fat cheeks too. several people came up to me at school after the christmas holidays and to put it bluntly said "what the f**k happened to your face????" mmmmm how to reply to that.....

my worst problem was getting to sleep and i found that within a week of getting off the drugs i was sleeping better than i had in months. i think different side effects take different ammounts of time to wear off but this is only what happened to me it may differ for other people.
 
Without starting a new thread, does anyone else recall (or currently going through) any issues with feeling, for lack of an easier way of putting it, um, mentally "f'd up"? I mean like you have had a personality shift or something....probably a result of mood swings/changes, but I feel really anxious and "out of place"...it's almost surreal, like you are a different person...I feel so different than I did last summer when I was simply on Asacol. I've been through so much mentally and physically though so that could be it...just really wierd feeling, can't really describe it, kinda like a caffeine high but without the "high" of it (meaning the positive "rush"), just feel really edgy...it's been like this off and on since October when I started the pred, so I've assumed it's the pred and it's effects....
 
I've totally had that feeling Benson. I've found myself angry at people for no reason then totally upset at myself after and wanting to just go sit by myself and cry/blast music to the point I forget my anger at myself over nothing. There are times I just don't connect to the world either and know its the pred because it started shortly after I started the pred and it only happens once every week or two. And I also had the problem with sleeping the first 2 weeks or so when I started the pred. Luckily I got used to it and aside from the hunger issues I think my taper is going well.
 
Oh, yeah, Benson.. Big time emotional roller coaster with the pred. now, I was 'expecting' it after researching it; and from my doc's run thru of potential side effects... But reading/hearing about it doesn't really prepare one for the actual 'going thru' it phase. I'm old school, and getting overly emotional in a public setting is way outside my comfort zone; and mood swings/shifts are soo... unpredictable, and off the scale. Wellll, it took more than a little 'practice' .. 'experience'... oh, I dunno what the right phrase for it actually is.. BUT I eventually got to a point where, whenever I got the 1st sign one was going to hit.. to literally 'hide-out' until I could get myself under some semblance of control... and to 'actually' talk to 'me'... remind myself that it wasnt' really me, it was the pred at work.. So, over the span of nearly a year (48 weeks on pred) I managed to teach me to accept/adapt/adjust... Just glad it all went away once I was clean of pred.
 
Yep have had horrendous feelings whilst being on pred. What was funny last year when I was in hospital was the girl in the next bed to me also had crohns and the two of us used to sit on each others beds and cry turn about and the other would support.

My last morning there I burst into floods of tears because the girl who took my blood didnt use a small needle and told me not to be so silly when I asked. There was me black and blue all down my arms from venflons and blood taking! But it was just that the least thing used to trigger me into floods of tears.

My GP apologises to me when he puts me on pred for my asthma or my gut because he knows the effects it has on me and I go through a "I feel so happy cause I am like my old self and want to do anything" to "there is this big black cloud not just over me but surrounding me". Never mind the muscle pains and the hyperness not being able to sleep whilst still being exhausted. I usually sleep for several days once off it to catch up.

Definately not on your own there.
 
I was told by my new homeopathic GI Dr. that that feeling is caused by a systemic yeast infection that can be caused by antibiotics and steroids. You should get tested- and make sure you take plenty of probiotics!!
 
My GI told me NOT to take any probiotics right now as they can have whacky effects on an immuno-suppressed body...Sorry, my GI trumps your new homeopathic for now, but thank you. :)

Good to know I'm not alone, I'm down to 17.5 mg/day starting today, another taper. YES. Can't wait.
 
BWS1982 said:
Without starting a new thread, does anyone else recall (or currently going through) any issues with feeling, for lack of an easier way of putting it, um, mentally "f'd up"? I mean like you have had a personality shift or something....probably a result of mood swings/changes, but I feel really anxious and "out of place"...it's almost surreal, like you are a different person...I feel so different than I did last summer when I was simply on Asacol. I've been through so much mentally and physically though so that could be it...just really wierd feeling, can't really describe it, kinda like a caffeine high but without the "high" of it (meaning the positive "rush"), just feel really edgy...it's been like this off and on since October when I started the pred, so I've assumed it's the pred and it's effects....
Click to expand...

Yeah, I had a major personality change as well--became very depressed and impulsive too, which wasn't like me at all.

And I think you're right to assume it's pred.

"Corticosteroid-induced psychiatric disturbances are common and include mania, depression, psychotic or mixed affective states, cognitive deficits, and minor psychiatric disturbances (irritability, insomnia, anxiety, labile mood)."

That's what this Mayo Clinic paper says--Psychiatric Adverse Effects of Corticosteroids. It's sort of interesting and explains a lot of what we go through while on pred.

This is also interesting: "Psychiatric disturbances can occur at any point during corticosteroid treatment, including almost immediately after initiation and even after cessation of treatment." I'm off the drug and yet I'm still extremely depressed. I really wish I had never taken it.

I've also read that corticosteroids are toxic to the brain and can permanently damage the hippocampus--what a f8cked up drug. That might be part of the reason at least why a lot of people with Crohn's and UC complain about memory loss.
 
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Yes, I've been off it for nearly 3 months, and still wonder if my fatigue is from the withdrawal...the thing that pisses me off is I NEVER had that great of improvement from it, I would have felt decent about the experience had it been beneficial for my condition, but it wasn't, I had a barrage of sides, and minimal improvement if any. I'm now back at square one and nothing's working still.
 
When I was prescribed it for a renewal after the hospital stay in Jan, they gave me a script for RX-strength pepsid to take simultaneously with the pred, my mom just gave me some Costco "Acid Controller" and said it would suffice.
 
I take one Zantac in the morning to protect my stomach from the Pred.... and yeah Benson, I hate it when everybody tells me how healthy and glowing I look with my moon face; it makes me MAD!!!!!
 

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