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Pros and cons of steroids

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Posted 12/4/2009 12:49 AM (GMT 0)
I am currently on a cocktail of pills and enemas that seem to work most of the time but am now flaring again, partly due to stress, for about the last three weeks. anyone taking steroids have any personal info for me? i am a left side sufferer.
Posted 12/4/2009 1:32 AM (GMT 0)
what meds are you taking?
Since last Thurs I've been on 80 mg prednisone. Right now I have to focus my breathing because my heart feels like it's going to beat out of control. I get night sweats, I shake, I get frustrasted easily, quick to anger and quick to get sad, my wife said my skin is thinning, I sleep 2-3 hours/day, I feel fair for 2-4 hours then seem to crash and feel awful for 8-10 hours (it's like an internal pain all over where I wish I had access to morphine)...other than that it doesn't bother me
These symptoms happen when I get over 60 mg. I would be fine on 20-30 mg. How much are you taking?
Posted 12/4/2009 2:21 AM (GMT 0)
i am currently taking balsalizide and a mesalimine enema, no steroids yet. doc said if conditiions don't improve within the next two weeks he may have to put me on them. just wondering what other peoples experiences were.
Posted 12/4/2009 2:58 AM (GMT 0)
Start VSL#3 (look the data up online). Your GI can write a presciption for VSL#3 DS or you can buy VSL#3 through a pharmacy over the counter. It's a probiotic that has been written about with some successful double blind studies in medical journals.
Some in here prefer to always have mild symptoms over using steriods to clear everything up entirely...reason being may be because one's body seems to adapt to the seriods where it could take more to fix each flare.
Not to scare you though, many folks have one to two flares without ever having another UC problem.
You may want to try some of the other non-prescription things people are doing...they didn't help me but some swear by them.

Get that stress under control is the best thing you can do! If you have to take something for it then it could be worth it in the long run.
Posted 12/4/2009 5:39 AM (GMT 0)
^^ I would say that's a little close-minded and a very large blanket statement.

Steroids do obviously have some pros or they would not be used so often. They saved my life when I was first diagnosed, no question, and I'm sure a few others can say the same. They do have some unfortunate side effects, but sometimes it is the only thing that will work for people.

Are there other options? Yes. Is it a good idea to keep your options open and try other alternatives before resorting to steroids? Sure. IT's always a good idea to try as many ideas as possible. For long term, steroids are not good for you. But none of the drugs we're all on come with no side effects. Steroids can help get your body out of a flare. Each person reacts differently to different drugs and different dosages.

80 mg is a LOT to be on at once, so I'm sure once you taper down a little your side effects will stop being so awful. Hope you both feel better soon!!

Posted 12/4/2009 5:49 AM (GMT 0)
Hi...what means not improving? What exactly are your symptoms at this time?

Is Colazal the first oral 5ASA you've been on? or was it a switch from another such as Asacol?

How many Colazal are you using?

How often are you using the enemas....nightly?

I've never used systemic steroids, and you have alternatives before you need to resort to them unless you're getting worse than you've ever been.

Part of the problem could be the Colazal....maybe try another oral 5ASA

quincy
Posted 12/4/2009 8:00 AM (GMT 0)
The preference is to avoid steroids, if possible, but they scare me less than cancer meds scare me.
Posted 12/4/2009 1:44 PM (GMT 0)
I feel the need to balance out my earlier post...

 

At 18 yrs old my GI used 15-20 mg prednisone to clear up my first flare (which was a little bleeding and cramps with bm's). 1-2 weeks after starting prednisone my symptoms were gone. Any side effects were all positive back then (maybe felt a little flush but had an increased appetite and increased energy level).

 

Over many years GI's have tried other meds to clear up my flares but I get so bad it forces them to use steroids. Over time more dosage of steroids is required to get the same affects on my symptoms. So 80 mg is a lot; they would not likely put you on that much.

 

Don't be afraid of steroids. If they are trying other things first and you're not getting better the steroids are a good choice in my mind.

 

When someone says they would never use steroids, it’s probably because their condition is kept tolerable with other meds. If their condition eventually became severe and their current meds no longer helped, would they choose removal of their colon versus taking 15-20 mg of steroids for 1-2 weeks?

 

 

Posted 12/4/2009 2:12 PM (GMT 0)
I have been on pred twice. Both times we tried many other drugs first without success. The highest dosage of pred I have been on is 40mg. I have experienced very few side effects. The pred has been the only thing that got me into remission. I have not had to be on it longer than 9-10 weeks. I have had VERY few side effects. The few side effects I did have were much easier to deal with than the effects of being in a bad flare. For me it is worth the risk when my flares are not responding to anything else. Many people do not experience the terrible side effects that some do...it is a very individual decision. I have no doubt I would have ended up in the hospital if I had not taken pred. My mother has also taken it off an on over the years for asthma. She also has very few if any side effects from it. I always continue to work-out and eat healthy while on pred. I also take extra vitamins and cut down on salt. I would try other drugs first but if they are not working then I would follow your doctor's advice.
Posted 12/4/2009 2:15 PM (GMT 0)
Steroids are great anti-inflammatory drugs . I was put on them 23+ years ago because other than sulfasalazine there weren't other options - and they did get me out of a horrible flare. I bacame steroid dependent and was on pred for 2 years, and I'm paying for that with some joint problems now - but as I said, there were no other options, so I harbor no ill will.

My son suddenly developed pancolitis at age 13 and was put on pred - 40 or 60 mg? and was off in less than 3 months and has done fine so far since (this was 2 1/2 years ago) - so for him it was a good medication. (He's on Asacol now.)

I would definitely try probiotics, but before doing oral prednisone I would ask the doc about trying steroid enemas - since your issue is in the left side, they might do the trick! There's a lot less systemic absorbtion than oral steroids. Your doc may point out that they won't reach up the whole left side, but if they really heal up the bottom, the rest might heal, also. Since my initial onset flare, I've ONLY used steroid enemas for bad flares - even when the inflammation has gone all the way up into the transverse!

So, I'd bargain with the doc: let me try these for 3 weeks or 4 weeks, and if there's no improvement, we can do the oral steroids.
If I were to do oral steroids again, I'd ask about entocort, since it's supposed to activate lower in the system.

Good luck and keep us posted!
Posted 12/5/2009 12:32 PM (GMT 0)
     My GI doctor hated me being on steroids but it seemed that prednisone was the only drug which helped me achieve remission.  However, over eleven years of on again, off again prednisone, it has given me osteoporosis, high blood pressure and high glucose levels.  I am off the 6MP and on Remicade weaning off the prednisone (today I can go to 15 mgm down from 20).  Doc said the list of adverse effects from prednisone is tripled that of Remicade.  I noticed a significant improvement in my condition two days after my first infusion.
Posted 12/6/2009 7:44 AM (GMT 0)

Burli said...

When someone says they would never use steroids, it’s probably because their condition is kept tolerable with other meds. If their condition eventually became severe and their current meds no longer helped, would they choose removal of their colon versus taking 15-20 mg of steroids for 1-2 weeks?

Hi Burli,

People are different. When I say, I would never use steroids, I mean I will never use steroids again for reducing a flare from colitis. I used them once when I was first diagnosed and did not know what I was getting into. I will never use them again for my colitis.

Choosing between removing the colon and 15-20 mgs of steroids for 1-2 weeks is not a realistic option:

1. If someone is flaring so badly that they might have to get their colon removed, then it is doubtful 15-20 mgs of steroids for 1-2 weeks is going to save their colon.

2. Taking steroids for one flare is not going to reduce the risk of getting another flare. This time, it's 40 mgs, next time it's 60 mgs, next time it is even more or it is some other strong medication.

The only way I would take steroids again is if I have something like asthma or chron's and the damage being done to my body from the disease is worse than the damage from taking steroids.
Posted 12/6/2009 7:17 PM (GMT 0)

None of us should take steroids - prednisone in my case - lightly.  We should research and ask about all the other options.  I already knew about prednisone when my gastro doctor prescribed it.  I had problems with a dog that took it and my husband has taken it for COPD a couple times.  I knew what I might be getting into.  For almost 18 months I had bleeding, diarrhea, cramping, left-sided pain, 2 scopes and a sigmoid.  I took all the mesalamines and found them all to work a little but my body could not tolerate them.  Then on to steroid enemas, etc.  Still no significant improvement.  I do believe Align was the best help from the beginning - or any good probiotic you can take. 

I am 69.  I truly don't worry about my bones too much although they are fine.  My blood pressure is already regulated with pills and only went up slightly on 40 mg. of prednisone.  When you eat too much salt (and I craved salt and sweet) my ankles were swollen.  I got moonface and some insomnia but Xanax helped the sleeping. I LOVED what it did for my skin and my arthritis and my increased enery (wish I could find that again)  My joint pain nearly gone and I could walk great.  I knew that would not last and indeed got worse when tapering. I took prednisone for 5 months, tapering the last two to 5 mg. every other day.  The aches and pains that came after were and are no fun.  It is better since stopping in August but still there.

Bottom line with me is without prednisone I might still be bleeding - lots of mucous - daily diarrhea - and living on Imodium and pepto bismal.  Because of have IBS too I still have bad days - don't know enough to not eat that hotdog because they always bother me!  Today I would take prednisone again under the same circumstances!  I sure hope I don't have to though. I have been in what I call 90% remission now since August.

ElaineNY

Posted 12/6/2009 11:40 PM (GMT 0)
Pros: can quickly stop a flare and kick-start a remission for many people

Cons: (short term) moon face, weight gain, increased blood pressure, difficulty sleeping, mood changes, acne, high blood sugar

Cons: (long-term) type II diabetes, osteoporosis, osteonecrosis, glaucoma, cataracts, adrenal failure.

Use with caution.
Posted 12/7/2009 1:36 AM (GMT 0)
Steroids for the short term and especially if you have never used them can be great. Normally the first time you use them ( and they usually start you at 40mg/day) they will kick the crap out your UC and halt it in it's tracks. In the short term (usually 2 weeks at 40mg and then taper by 5mg/week) side effects are mostly cosmetic (moon face), increased appetite, sleep problems and mood swings. The problem comes when you flare badly more than a few times a year. It is very common that if you use them repeatedly they work less and less well and have more and more side effects. Long term the side effects can be terrible. Our docs described it as anything that happens to a body as it ages can and will (to different degrees for everyone) happen with prolonged prednisone use. The real problem is we never know when it changes from our friend to our foe. Most doctors will tell you that if you need it more than two cycles a year that it is time to look at different options. Personally I think that is even too much.

All this said, you must realize that there are a lot of people out there that have a bad flare, are treated with prednisone and then do not flare again for a long time. For these people prednisone is a god send.
Posted 12/7/2009 7:57 AM (GMT 0)
I don't think I've read too many people whose flares have been stopped quickly having their taper method easy-peasy without having setbacks and the need for going back on to a higher dosage.

Some things need steroids, but I don't think it's a viable continued option for UCers/CDers with chronic flares. What needs to be done is developing a better option with the topical steroids that can be released in a smaller amount that's time released and the use of the rectals in a smaller amount but maybe more often.

There is supposed to be a new steroid UC topical oral med coming out soon (no, can't remember the name)....

q
Posted 12/7/2009 2:39 PM (GMT 0)
Quincy, I have a good friend who is a GI at one of the best hospitals in Toronto and he treats multitudes of UC cases. There are actually a lot of people with UC that have a flare every so often and are treated very well with prednisone....and yes, tapering easy-peasy. You do not read about these people since they are not on this forum due to the fact that their UC does not control their lives. They are out living their lives and not looking for answers here. The problems come when flares are happening frequently or continuously. Not sure what you mean by a topical, oral med?
Posted 12/7/2009 5:12 PM (GMT 0)
I've got to say that pred stopped my flare quickly and I did taper easily...given that, I'll use it again if I'm flaring and not getting better by upping my 5ASA's. Honestly, I think that allowing a flare to get really bad and stay really bad for a long time does more damage than using pred. However, if my flares come too often, and if I have to use pred to get out of each, then I'll try different maintenance meds to see if I stay in remssion for longer periods of time.
Posted 12/7/2009 7:47 PM (GMT 0)
I personally think the goal is to NOT use pred, and I again personally think it's remiss of a doctor to use that process for patients.

Of course, in saying that, many patients aren't patient or proactive in their care because having them end up in the hospital without personal continued intervention in an interesting observation.

My doc is well respected in my city and elsewhere.....and pred is far from his first choice of med.

It's great it's easy for your doc friend to have his patients taper off, but what about the next time they feel the need to be admitted into the hospital? I'm talking about the time between hospital visits.

Not all UCers end up in the hospital, and personally....many who do are those who have pred as their first choice of treatment.


quincy
Posted 12/7/2009 7:49 PM (GMT 0)
The topical steroids are discussed continually here. Entocort oral and the retention enemas, either liquid or foam.

I'm curious to know if your doc friend suggests them and if he suggests any 5ASA meds, etc. Interesting how many docs think so differently.

quincy
Posted 12/7/2009 8:01 PM (GMT 0)

fruitgirl said...
I've got to say that pred stopped my flare quickly and I did taper easily...given that, I'll use it again if I'm flaring and not getting better by upping my 5ASA's. Honestly, I think that allowing a flare to get really bad and stay really bad for a long time does more damage than using pred. However, if my flares come too often, and if I have to use pred to get out of each, then I'll try different maintenance meds to see if I stay in remssion for longer periods of time.

This was one thing I didn't understand when I had my second flare. My GI prescribed Colazal. I took that for about three to four days, and it worked. The flare subsided enough for my GI to do a sigmoidoscopy. He diagnosed me with UC and prescribed prednisone. If the Colazal was working, then was it really necessary for him to prescribe prednisone? If I had known was I know about prednisone now, I would not have taken it.
Posted 12/7/2009 8:06 PM (GMT 0)
subdued,At least you learned from that experience. Need I add why didn't he prescribe rectal meds as well? See, not all doctors think alike, to me it's to the detriment of the future treatment and possible flare cycles, etc.

q
Posted 12/7/2009 8:45 PM (GMT 0)
I agree that it was silly for your GI to give you pred in that case, subdued. My GI didn't prescribe me pred until mid-March, so I'd been on oral and rectal 5-ASAs for a month and a half at that point. I had seen improvement, but then a tummy bug kicked things back into "high gear" again. I had a newborn to take care of (and I was weak enough I couldn't get out of a chair while holding him) and an interview to prepare for. I had to get well ASAP, and pred did that for me. I think my doctor and I gave the 5-ASA's enough time to work...any longer, and well, I could have easily ended up in the hospital.

quincy, your ideas that pred negatively influences future flares, etc is just your personal opinion, right? I mean, there aren't any studies to back that up, are there?
Posted 12/7/2009 8:54 PM (GMT 0)
The normal route of treatment is 5ASA type oral drugs and 5 ASA suppositories or enemas first. If that does not do the trick then move onto steroid suppositories or enemas depending on how high up the inflammation is and only then if that does not work then move onto the oral steroids. These enemas and suppositories are topical not oral. Oral means taken by mouth and becomes systemic which means it is in your blood stream. The idea of topical suppositories or enemas is that hopefully very little steroid makes it into your blood stream. Entocort is a type of steroid that is absorbed less into the blood stream than prednisone and this is why it is used topically in suppositories and enemas. My question to you had been what is a "topical oral med"..as far as I know there is no such thing
Posted 12/7/2009 9:19 PM (GMT 0)
The first time I took oral pred I had been on Lialda (four a day), both Canasa and steroid enemas for SIX months without ANY improvement...I was actually getting worse and worse. I was having bleeding daily; not just on the stool but also passing blood without passing stool. I was really sick. I believe that in my case I should have been put on pred. sooner. Like fruitgirl, I had a new baby at home and was going crazy trying to take care of her and myself. I also work full-time. Pred. keep me out of the hospital but it was not the first thing my doctor tried. I am currently tapering off pred for the secong time. This time I tried cort enemas, canasa and Lialda for three months with no success. I started pred earlier than I did last time but I still did not use it first. I also agree that if you wait too long for the stronger medications you can (as I did) just get sicker and sicker. I did not have to take a higher dosage of pred or take it for a longer period of time the second time around...it works for me sometimes when nothing else does...call it the lesser of two evils if you will.  I have very little side-effects however and my tapers are pretty easy.
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