Hmmm, how well is prednisone at holding off flareups?

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Tensaiga
New Member


Date Joined Sep 2008
Total Posts : 16
   Posted 9/22/2008 12:18 AM (GMT -6)   
Basic background info: I am 20, started feeling bad around the beginning of july this year, took about a month to get properly diagnosed and by that time I was in baaaaad shape. When I got the flexible sig at the doctor's she said the walls of my intestine looked like raw hamburger. Spent a little over a week in the hospital, narrowly avoided surgery, got 2 blood transfusions, and on to treatment. Since that hospital stay I have been slooooowly recovering my strength and sort of wondering what to do with myself now that I have a lifelong disease starting from 20. Oh, I've also had to fight off some anemia issues after the hospital stay, but as of my last blood draw my blood count was at 8 and going up so that looks to be going fine.

Anyway, about 2 weeks ago I pushed myself pretty hard because I had to walk to the store and my body really probably wasn't ready for all that exercise as even though I felt fine energywise, by the end I more or less collapsed. Since then, I have been having some more gut...malaise. Not quite pain, but I was down to a single or two bowel movements a day and now I am up to 3-5. I thought it may be another flare up, but not so sure anymore. It's awfully soon after my very first, and I am on 40mg prednisone. The thing is, even though I am going more often, I haven't yet had pain, diarhea, or blood, the three things I know distinctly would have me worried. Just that weird malaise type feeling that makes me go, although it can be ignored and it will go away...

I am new to the disease and so still have lots of questions and not sure what to make of this, don't know my own body and it's reactions to UC yet. The prednisone is supposed to keep me over untill the Azathioprine kicks in (Got about another month to go), but the doctor is obviously trying to tone it down as fast as possible without me going into remission since taking this steroid sucks badly (Oh god...the worst is the extreme appetite I have. I am hungry while full. Ugh...). I am just worried that this going will get worse if I drop down under 40. Should I ask to go back up to 60? Stay at 40 longer? Drop down to 20 and see what happens?

Two more side questions: First, how important are the colonoscopies? I am really trying to avoid them since I don't have insurance and are already drowning in bills from my hospital stay plus the doctor I am now visiting. And the prep kinda scares me heh...So far I got the doctor to agree that as long as the medications work, she won't ask that I get the colonoscopy but if I get another flareup I really should. Just what is the point in getting them done, assuming that I keep getting better and don't flare up?

Finally...is anyone else on azathiprine? How much are you taking and just how effective is it? Knowing that I am going to be taking these every day for the rest of my life is...a bit daunting. And the pricetag isn't very kind either. But if they work at holding off flareups pretty well, I can live with it.

Sorry for all the text...Been healthy all my short life so it just takes some getting used to this whole "being diseased" thing.

tums
Regular Member


Date Joined Apr 2008
Total Posts : 128
   Posted 9/22/2008 4:58 AM (GMT -6)   

Hi, maybe you should get back in touch with your doctor as to be starting to flare again at 40mg in my experience should not be happening. Although saying that it might not be a flare. I have periods when I go once or twice per day and then all of a sudden I start to go more with urgency and think darn it I'm heading into a flare. I start to worry, shed a few tears and then it kind of sorts itself out.  Lots of things are factors, you might have eaten something that didn't agree, you might have a bug, I think the azathioprine can cause diorrhea (could be wrong on that one tho!). Always around my time of month I seem to flare a little (although if you are male obviously this will not affect you!)

I am on azathioprine and have been for about 5 months and although I don't really see any difference my doctor thinks it is helping and I am also told that it can take a good 6 months to get into your system. As well as that I am on 5mg pred and also supposed to take prednisolone enemas nightly although I am slacking on that one.

Hope everything works out well for you and it's just a bit of a blip but if it continues or gets worse you should definately check it out with your doctor.

 

 


32 year old female
UC diagnosed 2001
Asacol 6 per day
Azathioprine 100mg started 4/08
Steroids 5mg per day


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 9/22/2008 7:40 AM (GMT -6)   
First, let me welcome you to HealingWell. You'll find a lot of support and ideas here.

Prednisone is not effective and isn't intended to be used for preventing flares. Its use is to quickly stop flares by reducing the inflammation. Taken long-term, Pred has some very horrific side effects.

Azathioprine works wonders for some of us with UC, not so much for others. It does take 3-6 months to kick in usually. While it may seem expensive, it in fact is one of the cheaper drugs we can use.

Colonoscopy is important for an accurate diagnosis. There are a number of types of colitis (UC, Crohn's, collagenous, infectious for example,) and it's difficult to be sure of the diagnosis without the scope and biopsies. The accurate diagnosis can affect what treatment is used. It sounds as if your doctor is trying very hard to help you yet stay within what you can afford.

Good luck, and I hope things settle down for you soon.
Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 9/22/2008 7:32 PM (GMT -6)   
I feel your pain, about the Pred. and the fear of what is to come.
My daughter is fighting the good fight, but is not winning. Perhaps you will fare better. The Asacol and then Colasal have not stopped the flare, and the side affects of the Pred. keep us from wanting another trial. Some find this a miracle drug, so you have to do what works, but she had every bad affect on the label. The 6mp seems to help, and allowed us off of the Pred. No side affects, other than some hair loss. Hang in there. Keep up on this site for info. and see your doc again. At 40mg., you should be more stable.
Daughter,14 diagnosed 1-08 w/ UC .learning from you all.
Asacol, Prednizone 50mg, major flare, now off!, Hosp. @U of C, Comers twice this yr. Low residue diet still
began 6MP, ,horrible acne, and fearful of future.
trying probiotics, Omega 3, and keeping up with doc visits.


MemphisMarine
Regular Member


Date Joined Aug 2008
Total Posts : 26
   Posted 9/23/2008 8:06 AM (GMT -6)   
Hey I'm 24 and was newly diagnosed this year. I am currently tapering down from 60 mg. I am at 30 mg with only 3 more weeks to go!!! The side effects that I've noticed in myself are acne, more body hair, increased appetite, insomnia, and moodiness. But, I am only going one time a day. Sometimes I go more often. The thing that I've noticed is that when I have a big meal or I eat a lot, I go a little more. I might experience a total of 3 BMs during the day if I eat a lot. I mean, what goes in must come out somehow.

As to staying at 60 mg or 40 mg. Not worth it. Your doctor will strongly discourage a prolonged use of pred. The long term side effects are pretty bad. Another note is that I seem to experience the side effects of acne, insomnia, moodiness within 2 days of tapering from a higher dosage. Told my doc and he thought that was a little strange. Most people experience the side effects at the higher dosage. The only thing I had at 60 mg was moodiness. But, I'm only going 1-3 times a day and I have no blood or dia. so I am going to continue tapering.

Colonoscopies aren't really all that bad, its the prep work that sucks. I have had 2 colonoscopies already and will probably have a third one after I get done tapering. I am in the military and need to have confirmation that I am indeed in remission so that I can continue training. Also, the before and after pictures will tell a great deal about how things are really looking down there.

A trick that I learned about a food that will fill you up for a snack that has almost no calories is to eat rice cakes. They only have around 50 calories and are very good. I eat the caramel or the apple cinnamon flavor. If your wanting something with a little more protein, put some peanut butter and bananas on top. It tastes great.
Diagnosed with UC protosigmoiditis: May 2008
Didn't believe it so I got scoped again in August, definitely have UC
Current Meds: 4.8 g Lialda, 1000 mg Mesalamine suppository, 40 mg prednisone
No longer in a flare, but tapering!!! I'm only going once a day and crapping logs!!!


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 9/23/2008 1:24 PM (GMT -6)   
Colonoscopies are extremely important in getting a correct dx, but without insurance it will surely be really expensive. Think about this though...how expensive is another hospital stay going to be if your symptoms continue to get worse? The prep really isn't that bad, but it certainly cleans you out! I'd bite the bullet and get the c-scope just so you know exactly what it is that you are dealing with. I just started on prednisone for the second time in my life with UC, and I hate the stuff. You described my appetite perfectly, as well as the other normal side effects, which is why I'm tapering as quick as possible now that things are under getting under control...it didn't take me very long on pred to regain the 15 lbs I lost when flaring bad.

This forum has been invaluable to me since my dx. There are a lot of caring people here who are always willing to help. Good luck.
Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06 - currently flaring
Asacol, Florastor 3/day, VSL#3: 2 caps 3/day, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda 2.4mg 2/day, Prednisone 15mg, Colocort retention fluid


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 9/23/2008 2:05 PM (GMT -6)   
Pred is a funny med...in the beginning when I took it, it worked fantastic, but each time I went on it, it was less effective, now it doens't do squat for me...you can become pred-dependant very easily so I'd be careful with that drug...it's the devil in disguise.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Tensaiga
New Member


Date Joined Sep 2008
Total Posts : 16
   Posted 9/27/2008 12:14 AM (GMT -6)   
Thank you everyone that responded smilewinkgrin

tums said...
Hi, maybe you should get back in touch with your doctor as to be starting to flare again at 40mg in my experience should not be happening. Although saying that it might not be a flare. I have periods when I go once or twice per day and then all of a sudden I start to go more with urgency and think darn it I'm heading into a flare. I start to worry, shed a few tears and then it kind of sorts itself out. Lots of things are factors, you might have eaten something that didn't agree, you might have a bug, I think the azathioprine can cause diorrhea (could be wrong on that one tho!). Always around my time of month I seem to flare a little (although if you are male obviously this will not affect you!)

I am on azathioprine and have been for about 5 months and although I don't really see any difference my doctor thinks it is helping and I am also told that it can take a good 6 months to get into your system. As well as that I am on 5mg pred and also supposed to take prednisolone enemas nightly although I am slacking on that one.

Hope everything works out well for you and it's just a bit of a blip but if it continues or gets worse you should definately check it out with your doctor.


Yeah, I am waiting for it to pan out more before I start to panic. Right now it really hasn't affected me too much, just have to go a bit more often. Even better, I can ignore the urge at a bit of a cost (discomfort til it passes) if I can't go right then. Until I get pain, blood, or serious diarrhea, I won't bother doc.

Judilyn said...
First, let me welcome you to HealingWell. You'll find a lot of support and ideas here.

Prednisone is not effective and isn't intended to be used for preventing flares. Its use is to quickly stop flares by reducing the inflammation. Taken long-term, Pred has some very horrific side effects.

Azathioprine works wonders for some of us with UC, not so much for others. It does take 3-6 months to kick in usually. While it may seem expensive, it in fact is one of the cheaper drugs we can use.

Colonoscopy is important for an accurate diagnosis. There are a number of types of colitis (UC, Crohn's, collagenous, infectious for example,) and it's difficult to be sure of the diagnosis without the scope and biopsies. The accurate diagnosis can affect what treatment is used. It sounds as if your doctor is trying very hard to help you yet stay within what you can afford.

Good luck, and I hope things settle down for you soon.


Yeah, the thing I worry about with Az is that...it's so hidden. It costs a lot (At least for me, $2 with no insurance sure feels like a TON. It's an actual "needs to be accounted for" bill, not like the cheap $4 scrips.) and it takes an indeterminate time to kick in, and even when it does there is no way to tell it is working except not getting a flare, which could be luck for all you know. My doctor keeps asking me if I have any nausea and vomitting and after a month and a half of it at 100mg I haven't, so I hope that is a good sign that it will work!

Katmom said...
I feel your pain, about the Pred. and the fear of what is to come.
My daughter is fighting the good fight, but is not winning. Perhaps you will fare better. The Asacol and then Colasal have not stopped the flare, and the side affects of the Pred. keep us from wanting another trial. Some find this a miracle drug, so you have to do what works, but she had every bad affect on the label. The 6mp seems to help, and allowed us off of the Pred. No side affects, other than some hair loss. Hang in there. Keep up on this site for info. and see your doc again. At 40mg., you should be more stable.


Oh my, you have my best wishes for your daughter. Just how bad DID she react to the pred? The side-effects for me have been incredibly annoying, but they must've been devastating if switching to a med that causes hair loss is a step up. I'm so sorry.

MemphisMarine said...
Hey I'm 24 and was newly diagnosed this year. I am currently tapering down from 60 mg. I am at 30 mg with only 3 more weeks to go!!! The side effects that I've noticed in myself are acne, more body hair, increased appetite, insomnia, and moodiness. But, I am only going one time a day. Sometimes I go more often. The thing that I've noticed is that when I have a big meal or I eat a lot, I go a little more. I might experience a total of 3 BMs during the day if I eat a lot. I mean, what goes in must come out somehow.

As to staying at 60 mg or 40 mg. Not worth it. Your doctor will strongly discourage a prolonged use of pred. The long term side effects are pretty bad. Another note is that I seem to experience the side effects of acne, insomnia, moodiness within 2 days of tapering from a higher dosage. Told my doc and he thought that was a little strange. Most people experience the side effects at the higher dosage. The only thing I had at 60 mg was moodiness. But, I'm only going 1-3 times a day and I have no blood or dia. so I am going to continue tapering.

Colonoscopies aren't really all that bad, its the prep work that sucks. I have had 2 colonoscopies already and will probably have a third one after I get done tapering. I am in the military and need to have confirmation that I am indeed in remission so that I can continue training. Also, the before and after pictures will tell a great deal about how things are really looking down there.

A trick that I learned about a food that will fill you up for a snack that has almost no calories is to eat rice cakes. They only have around 50 calories and are very good. I eat the caramel or the apple cinnamon flavor. If your wanting something with a little more protein, put some peanut butter and bananas on top. It tastes great.


*salute* I can't imagine being in active duty and suffering a flare. That would be...man. I've heard a lot from people who stay incredibly active while in flares, but my own experience with the first flare has all but scared me away. I still don't know how people do it.

And yeah, I don't fear the colonoscopy itself, I fear the prep immensely. Call me a bit of a baby, and I am, but...drinking a gallon of a foul-tasting liquid sounds like a nightmare to me. When I was first in the emergency room they wanted to do a cat scan on me, but I literally couldn't get enough of the barium in me to do it. I was going to puke about halfway through the first container and they wanted me to drink two of them. Since then the colonoscopy prepwork has just terrified me. I also couldn't do the upper GI study that my doctor wanted to. I will have to man up and do both at some time in the future, but boy, I will avoid them as long as possible, even if it ends up being worse for me. Ironically, the horrible day of sitting on the toilet and emptying my bowels doesn't really phase me much. Guess I have UC to thank for that one.

Thanks for the rice cake suggestion! I will check that out sometime. Right now I have been devouring some really good beef jerky...

beartooth said...
Colonoscopies are extremely important in getting a correct dx, but without insurance it will surely be really expensive. Think about this though...how expensive is another hospital stay going to be if your symptoms continue to get worse? The prep really isn't that bad, but it certainly cleans you out! I'd bite the bullet and get the c-scope just so you know exactly what it is that you are dealing with. I just started on prednisone for the second time in my life with UC, and I hate the stuff. You described my appetite perfectly, as well as the other normal side effects, which is why I'm tapering as quick as possible now that things are under getting under control...it didn't take me very long on pred to regain the 15 lbs I lost when flaring bad.

This forum has been invaluable to me since my dx. There are a lot of caring people here who are always willing to help. Good luck.


Well, I already agreed with my doctor that if I get worse, I will bite the bullet and get it done. But as long as the medication holds off the disease, I honestly don't care if it morphs into "Satan's rupturing bloated leprosy", I'm happy. I do agree that if the medication stops working, that I need a more accurate diagnoses but for now..."IBD, probably UC" works.

And yeah, I got weighed at the doctor's yesterday and I had regained about 90% of the weight I had lost from flaring in just 90 days or so...I am a bit scared that I am going to end up gaining weight due to the pred, and not the muscle mass I want back...

pb4 said...
Pred is a funny med...in the beginning when I took it, it worked fantastic, but each time I went on it, it was less effective, now it doens't do squat for me...you can become pred-dependant very easily so I'd be careful with that drug...it's the devil in disguise.

:)


This...scares me greatly. I've seen pred as my miracle parachute but if it fails...

Tensaiga
New Member


Date Joined Sep 2008
Total Posts : 16
   Posted 9/27/2008 12:24 AM (GMT -6)   
ANYWAY, update after my last doctor's appointment:

My hemoglobin is up to 10 and a half from 6 and a half from the last time I visited. That is very good news. I am also getting stronger gradually as I recover from the flare+hospital stay, although the doctor told me that I should expect a full recovery to take even longer. As someone who has never been sick before, I am used to recovering in a few days from things like a cold and this is much, much more serious.

I am now down to 20mg pred a day, and will half that every 2 weeks, seeing what happens along the way.

I also am now getting the dreaded acne from pred. I've never really had acne before so I have a question: The little red bumps...is this just the start, or will I stay there? Right now I have little bumps all over my chest, shoulders, and upper back. They don't really feel like pimples yet, from my few experiences with pimples, but they are noticeable bumps. What I find infinitely worse is just how oily my skin feels, especially around my nose. It feels disgusting. Do you think it will get worse? Right now it looks hilariously like I have pimple chicken pox on my chest!

I can't darn the prednisone too hard, I owe the continued existence of my colon to it, so I have to love it. And luckily, I have reacted FAIRLY well to it. The side-effects, while annoying, aren't life-changing. The appetite is only an urge, and can be ignored with enough willpower or saited but countered with more exercise. The mood-swings...well, I am a disciplined person. Every time I have acted out, I make sure not to blame the pill and blame myself, as I can control myself, I am 20. The insomnia is luckily random and not constant, though could be a problem with school starting soon. The heartburn with tums. The acne JUST started, but I can't see it more than being very annoying.

I very much like my colon. And more importantly, I would rather hack off my own left arm than live the rest of my life with a colostomy. So prednisone, you rat ******, I love you.

beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 9/27/2008 12:06 PM (GMT -6)   
"So prednisone, you rat ******, I love you."

I couldn't agree more. It is usually a quick fix for me, high dose to get things under control, then start tapering. The acne is a problem for me as well, especially on my back if I do an extended run on pred. I don't have as much problem with acne at lower doses. It did take awhile to clear up after I broke out though...sorry to tell you that. You said your face feels greasy, I'm curious about your diet. I don't eat a lot of fast food or other greasy stuff, but I can tell the day after I do. It just feels like the grease is pouring out. This might sound weird, but I swear that if I eat italian sausage, I can smell it in my sweat.
 
Have you thought about asking your doc for samples of your meds?  Many doctors carry samples and will give them out to people who don't have insurance/have high co-pays.  Something to think about.

Hopefully things will be under control and you can continue tapering. Good luck.


Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06 - currently flaring
Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Colocort retention fluid, Prednisone 15mg and tapering down


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5968
   Posted 9/27/2008 1:55 PM (GMT -6)   
Quick question.  What is the tapering of your prednisone?  Doctor put me on 40 mgm on Thursday for five days then down to 30 for next five days then to 20 until I see him on the 6th of Oct.  Since I have become pretty much prednisone dependant with this last flare, not being able to be off it for more than two weeks without symptoms coming back with a vengence, I believe when I see him on the 6th he will have me tapering 5 mgm at a time.  I, too, get the little pimples on my face and I am 62 yrs old!!!  But my worse symptom with the prednisone is the insomnia which I counteract by taking ambien cr 6.25 mgm.  Works wonders.   The mood swings are pretty bad too.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Still flaring.   Afraid that I am pred dependant.  Back on Pred 40 mgm for five days, then taper.  Other meds...Colazal, 6MP, Nexium, Cort enemas, Canasa suppository, Benicar, Toprol xl, water pill.
Calcium, Probiotic, Flaxseed oil capsule, multivitamin with Iron
Also have osteoporosis and high blood pressure
Remicade NOT an option. Not a candidate for surgery yet..says surgeon.


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 9/27/2008 3:57 PM (GMT -6)   
My taper right now is fairly quick. I started at 30mg for 10 days, then down to 25mg for five days, 20mg for 3 days, and now at 15mg, at least until Monday. I started hydrocortisone enemas, which I'm guessing is why I am able to taper so quick. The last time I was on pred, I think I was going down 2.5mg every two weeks. Seems to me that it took forever to get off pred last time.

The mood swings get me as well. In general, pred does wonders for my UC, but causes so many other things (mood swings, insatiable hunger, acne, moon face, hair growing really fast, insomnia) that I wonder if maybe the flare isn't better...but I guess the flare was bad enough that I agreed to do the pred again. I tend to forget how bad something is until I'm doing it again..useful habit in some ways, horrible in other ways.
Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06 - currently flaring
Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Colocort retention fluid, Prednisone 15mg and tapering down

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