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Posted 1/3/2008 12:41 AM (GMT 0)
I have been on prednisone solid for almost 1 1/2 years.....a long time.  Every time I get to 2.5-10mg then I flare (alittle blood, loss of appetite etc).  I have been on 60mg once and the rest of the time pretty much 20mg and then taper down when I flare.  My doctor wants to do surgery but, of course, I don't.  But, I am pretty tired of this.  My question is:  Can I stay on a low dose (5-10mg) of prednisone for life or is that really risky?  I have never had a bone desity test done and, right now, have no side effects so it is tempting to me.
Posted 1/3/2008 12:44 AM (GMT 0)
Have you considered Imuran or 6mp? I was steriod dependent and Imuran helped me get off pred. I am pretty certain that long term pred. use is not recommended due to bone loss.

When I taper I usually see a surge of symptoms as my body adjusts. What does your doc say about it?
Posted 1/3/2008 12:57 AM (GMT 0)
Thanks for your response.

I had allergic reactions to imuran and 6mp according to my doctor so that is not a choice. I have choosen not to try remicade because I am too scared of the potential side effects so he has recommended me for surgery. Thanks for the suggestions and I wish they were a choice for me.

As for what you said that you saw a surge of symptoms.......does that mean that it eventually settles and it goes away......the symptoms? I usually breakdown and increase my prednisone back up because that is the only "cure" to feeling better. I have ended up in the hospital 2 times with unexplained nausea and vomiting. They finally just increased my prednisone and I felt better. I feel like a drug-addict that is addicted to prednsione so I need my "fix" daily. So do you think that I might be able to "ride out" the symptoms and then eventually I would be off prednisone? I often have felt like the nausea came from the prednsione withdrawl and not the UC.

Thanks again for responding. The last time I posted I got frustrated because one of the members that responded kinda "fussed" at me that I posted a topic that must have fairly recently already been posted. Tough to sound not nice in a post but they made it clear that I need to pay better attention. Just fyi.
Posted 1/3/2008 1:05 AM (GMT 0)
I can tell you this from my experiance:

When I tapered Pred, I always had some blood, mucus and even some mild cramping for a few days on the adjusted dose.
For me in 3-5 days it would go away. The hardest jump for me was from 15 to 10mg. After that it was smooth sailing. I was on pred for about 9 weeks as high as 40mg.
Good luck
Posted 1/3/2008 1:18 AM (GMT 0)
I am definitely sorry if another member (or me for that matter!) fussed at you. Please feel free to alert a moderator by sending them an email. We all have our emails posted in our profiles. We try to ck all the posts to make sure everyone is playing nice but we usually miss some:)

That being said. That stinks you are allergic to Imuran and 6mp. This has been my experience w/ tapering. I have been on pred twice for approximately 3-4 months each time. Each time I tapered, whether it was by 5mg or 10mg, I would see 2-4 days of urgency, mucous and some blood then things would go back to normal. BUT I couldn't get completely off pred. my last flare and that was why I went on Imuran.

I am scared to tell you to stop and then you go into a flare. Do you like your GI? Feel like you need a second opinion. No one should be pushed into surgery if they are not ready/don't want it. Any luck w/ rectal meds?
Posted 1/3/2008 1:19 AM (GMT 0)
I was on Pred for almost a year, then on Entocort for about thred more. The entocort is "supposed" to have fewer side effects. In addition to the dreaded moon face and belly fat, I got
- type II diabetes
- osteoporosis, resulting in a stress fracture of both the bones in my lower leg. It took a huge surgery and 3 months recuperation to repair, and I still have a big metal plate in my ankle.
- trigger fingers in both hands
- avascular necrosis in my shoulders. This is a very painful condition which causes the bone to dissolve. It required two painful surgeries and more than a year of rehab.

Not everyone gets a lot of side effects. But be warned, some of us do.
Posted 1/3/2008 1:43 AM (GMT 0)
my GI considers blood during a taper a sign that the body will flare if the taper continues, so I actually have only been allowed to taper when I can do so without the blood. I too am steroid depressant and switched to Imuran, but actually i NEVER bled when tapering on pred (though I have only been on it twice). but man, within just two weeks of getting off it I was sick again.

as for long term pred use, my GI (who I REALLY respect), is strongly against it not only because of the long-term effects, but also because science indicates that the drug eventually stops being effective. I know that it what you want to hear right now, so I apologize for being the bearer of bad news, but I think you should be aware of the fact that it is likely the pred will eventually quit being effective anyway. It could be years - who knows - but really, that, combined with serious consequences of continuous use, even at low doses, is something to seriously think about.

did you try both 6-MP and Imuran? I ask because some people can't tolerate one but can tolerate the other, so if you only reacted to one, it might be worth trying the other.

hope this helps and that you feel better soon.
Posted 1/3/2008 5:27 AM (GMT 0)
I would give Humira or Remicade a try first. Surgery is such a big step, and Remicade works for some people. I just had a reaction to it after almost 3 years on it, I swear it was cause they raised the dose. Anyways, I went through A LOT of pain recently but I would do it all over again if it meant I had about 2 pretty good years of near remission.
Posted 1/3/2008 12:44 PM (GMT 0)
You have a great GI if he or she is advising against long term steroid use.  I also was steroid dependent and after cycling through all the drugs up to 6mp (remicade was not on the market back then) I opted for sugery due to the fear of long term pred use.  It was the best decision, healthwise, that I have made to date.  Fortunately I did not suffer any long term side effects but I did suffer with painful joints the first year being off the drug.  I think a lot of the classic side effects aren´t even realized until one tapers completely off.  If you are considering staying on the drug long term be sure to get plenty of bone building exercise and take calcium supplements.  My GI thinks the only reason why I did not have bone damage was due to the 25 plus miles per week I walked the entire time I was on it.  I had surgery after 2 years of being on and off prednisone.

Sue

Posted 1/3/2008 12:56 PM (GMT 0)
I have been on and off prednisone for 16 years and during that time i've suffered every side effect that the drug has. But it has been a life saver for me. It will without doubt leave me with problems as i get older but unfortunatly that tis the price i chose to pay.
Posted 1/5/2008 4:23 PM (GMT 0)
I was on Prednisone from Jan 2007 thru November 2007 and that was long enough for me thank you!

I got arthritis, osteopenia (in the 4th month i was on Prednisone), gained 45 pounds, for short term its fine, but long term it is a nasty drug.  plus, not to mention i lost alot of my hair from predisone and gained hair on face and body. it was very nasty to me, i hope it is kinder to your body.

Posted 1/11/2008 3:19 AM (GMT 0)
Fatboyslim,
17 years on off for me. Hips are shot and degenerative athritis of the spine.
Only GOD knows what else.

Chili123,
I CAN NOT taper off pred at 5mg increments. at 30 I start tapering
off at the rate off 2.5. At 20 I start tappering at 1.25.
Yes I cut the pills in half then quarters. Use a razor blade. A doc I had back in early 90's
had me do this and it worked. And I do it SLOWLY. Two weeks on every new dose at least.
Unfortunatly pred stopped working for me for the next 8 years but started working for
me again in 1999?.. I have been tappering off like that for the last 8 years and also
has controled most of my major flares nicely. Good luck!!!

Steve
Posted 1/11/2008 10:17 AM (GMT 0)
Chilli123 - in response to your post question, no. There is no "safe" way to stay on pred for life - even low doses seem to provide serious side effects when used long term.

That however is not to say that Abatacept, Remicade etc don't either - its just they are much newer drugs and the doc's simply don't know. However I really love the prednisone side effects of eye cataracts and death of the hip joint bone. They both scared the bejezzus out of me and helped encourage me to just deal with the pain of prednisone withdrawal. And yes, I was on prednisone for 18 months as well, with a good 6 months of that at 60mg. I also found that a drug called Colazide (in Australia - seach wikipedia) helped me SO much, and the Abatacept I am on can also be credited with keeping my system stable while I got rid of the pred.

Off prednisone now for 5 weeks. I will not lie, prednisone withdrawal is a long hard road, but you don't realise what its doing to you personally and how much it messes up your head until you are off it.

By the way -
My taper schedule was 5mg/month drop from 60mg to 30, then wait an extra month, then another 5/month to 20. After that it was 3mg drop/month from 20mg to 10 (14mg to 9mg was very hard). Then 2mg/month drop from 9mg to 4 (that was not pleasant) then wait an extra month. Then 1mg/month from 4mg to 0.

I will add that I added an extra 1mg into the mix for 2 days at a time when the symptoms became unbearable, but would then drop back to the scheduled dose. That seemed to help. This I used very sparingly.

Hope you find the right combination of drugs and natural remedies to get you through. I'll also mention I was using fish oil capsules from 14 to 0. I found that once I started taking them, the poop symptoms were not quite so nasty. I was taking 6 capsules, 3 times a day as was used in the two studies I was able to find.
Posted 1/12/2008 8:22 PM (GMT 0)

Chili

I fully sympathise.  I have been on pred for more than 4 years now. I am completely steroid dependent.  I have tried so many times to taper off but I always get horribly sick if I try to come off of it.  So, I am now staying at 7mg until a new drug comes along (im hoping to go onto the abatacept trial next month). I have had all the pred side-effects.

My GI has been pushing me to have surgery for years. I have tried every UC drug out there and it is very depressing.  I have always remained adamant never to have surgery but after reading the scary stories on here about pred eventually stopping working, I think it is inevitable.  It makes me really sad. I really hope some wonder drug will put me in remission.

Posted 1/13/2008 3:01 AM (GMT 0)
Steroid dependency is HARD! Without Imuran, I'd probably still be on it :(

Prednisone for ever isn't a good idea. Since Imuran isn't for you and you've decide no Remi, surgery might be worth considering. I know it's tough to get your mind around. Two books helped me to come to peace with the idea - if/when that time comes. I'd recommend you read them. "It Takes More Than Guts" by Philip Van Hooser (sp?) and "bag lady" by Sandra Benitez.

I agree - a VERY SLOW taper is an option. What taper have you been following? I'd always have trouble around 20mg. That's where I'd get stuck :( Once or twice I made it to 10mg only to have to jump back up. I did a 2.5mg taper every two weeks or every four weeks.

One option during a taper is to alternate doses every day. Say you're at 20mg for a month and it's time to step to 19mg (whatever taper you're using) for a week or two you would go from 20mg one day to 19mg the next day. Then you'd go to 19mg for a month or two weeks. Then alternate for a week or two. On and on until you're off.

Good luck with what ever option you choose!
Posted 1/13/2008 4:44 AM (GMT 0)
I've been on & off prednisone for almost 3.5 years. I can't seem to get below 15mg. 6MP & Imuran didn't work for me. Asacol doesn't work.

I just started Humira two weeks ago. After my fourth week I will try to taper off the prednisone.
Posted 1/14/2008 12:51 AM (GMT 0)
I've been on pred twice. This last time for 1 year. I am now on Imuran with no problems. Yes, it's possible to be on small doses of pred for a long time as long as you are monitored. Speaking of monitoring, you should have a bone density test once a year. All the best. Judy
Posted 1/14/2008 1:22 AM (GMT 0)
Hey Chili123,
I can relate to your situation! And I would really, really urge you to seek a second opinion!! Surgery is no small thing, and at least from the drugs you've listed, it seems like there are a whole bunch of others that haven't been tried yet!! Look at the list of what other people have been on from this website--they ALL have merit and you should ask your doc about every single one of them!

For me, I am also steroid dependent (couldn't taper below 10mg), and the one time I did, I flared within 3 weeks (dumbfounding my GI doc). I also had a reaction to Imuran/6-MP--gave me acute pancreatitis (no fun)! My GI doc now (who I've been with for 1.5 years) put me on Prograf. That's his last step before putting patients on Remicade. Prograf (tacrolimus) is an oral capsule, and UC treatment is an off-label usage of the drug. It isn't very well known among docs (my former one didn't know about it), but it has worked WONDERS for me. It is similar to Cyclosporin which is a more popularly known drug--Prograf is a newer drug on the market (specifically for transplant patients). I've had NO side effects on Prograf. It only requires me keeping track of blood levels every month or so.

You are very very lucky to be having an easy time on the pred. I was on it once for 4 months, and this past time for 10 months, and I'm still experiencing the after effects. In my opinion, I'd get off of it if at all possible.

In addition to the prograf, one thing that worked for me way back when was going on antibiotic therapy to kind of 'reset' the GI flora. I was on Ciproflaxin for a few months, and it seemed to do the trick, but the next time I flared it didn't work.

Either way, if your doc is still only giving you the choice between Remicade and surgery...wouldn't it be better to try the injections before losing your colon?! I guess everyone has a different outlook, but I'll try anything once if it will make me feel better.
Posted 1/14/2008 2:44 AM (GMT 0)
Pred should really only be used as a booster for maintainence drugs like asacol, imuran and such, not as maintainance drug itself because of the long term permanant side effects it can cause...there are better things out there than pred for long term use....I strongly suggest you talk to your GI about this.

:)
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