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Prednisone - the g-d awful *&&^%% drug that i really do love...

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Crohn's Disease
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Posted 1/13/2014 4:17 AM (GMT 0)
i know its been written about many times...prednisone...i hate it with a passion. but i love it as well. my doc and i decided that come hell or high water i am getting off this drug that i have been on literally for years. everyone is mad at me and i hate it, but here's how it goes...i start flaring...usually have been somewhere around 10 mgs or so...so i bump up to 30 mgs or so for a few days, then 25, 20, 15...the bleeding stops almost immedietly. the pain gets better. the br runs stop being desperate sprints to save my pants...and so i keep going down- slowly...9, 8, 7, 6...ususally to 5 mg- then my body says uh uh and i start to flare again so the never ending cycle continues...this time i made it down to 3 mg!!!! i was so happy. i was able to stay there for a few weeks...i was bleeding a bit and the pain was a bit worse but i gritted my teeth and went on- the doc and i decided mildly exacerbated symptoms were worth it if i could get off the pred...then boom - lots of blood, br runs all day that hurt like heck...i was so bummed. so up we went - 30, 25, 20 and now back to 15 - going to 12 tomorrow.

I just can't seem to be able to get off this drug completely. i'm on humira, imuran, asacol hd, and some other tuff...so many pills. oh yeah - budesmide (i think) also...

Any ideas or anyone with the same experience. i want this drug gone forever. i'm not very optimistic that will be the case though...

thanks!
Posted 1/13/2014 2:06 PM (GMT 0)
I am also prednisone dependent. I have felt my best at 12.5 mg but have maintained mostly at 5 mg for a couple of years now. Anything less and everything aches. Occasional bouts I go back up but usually reduce slower than a few days. Right now on 10 mg for another week. At least the hump is gone from back of neck from high doses of pred and entocort. I also take lortab 2 or 3x a day which helps reduce inflammation and D.
Posted 1/13/2014 2:30 PM (GMT 0)
Where's your Crohn's located? And why are you even on Humira, Imuran and Asacol (and possibly Budesonide) if they are doing so little to control your symptoms? It's clear they're not working. You need to have an honest discussion with your GI about treatment.

I was in a similar position for about 18 months. Prior to then, I'd had a few courses of steroids, but I was off them more than I was on them. The steroids never led to remission: in fact symptoms would start coming back as high as 30mg, but I still stuck to the 5mg/week taper and never lingered. This changed in 2011 after a flare-up which lead to a 2-week hospital stay. Subsequent flare-ups were more severe and I literally couldn't function. So yeah, I basically ended up being on steroids all the time.

My sig tells my fate. I think without surgery I would never have been able to get off steroids. Pred = the ultimate troll drug. It heals nothing. Just keeps you trapped in an never-ending cycle of misery.

Like I said above, you need an honest discussion about treatment and where to go from here. If your GI is clueless, seek a new GI who is knowledgeable about refractory Crohn's and treatments beyond the biologics. It might also be time to think about surgery: a colorectal surgeon will be able to tell you if surgery is suitable and what your options are. Finally, you could try a diet like the SCD, although sometimes I suspect these drastic diets do more harm than good (the same could be said about meds, though, to be fair).
Posted 1/13/2014 4:01 PM (GMT 0)
I am in the same long term user..I have done the 1 mg taper thing--been on as low as 5mg--on 10mg currently--I also get bumped with a taper with illness or a slight flare--the taper down is always awful along with any increase--I reacted to all other meds it seemed but some doctors are okay with low dose long term usage and some arent love to get off of it but I am not liking the alternatives--I have been currently functional for awhile where before predisone I reacted to everything and was far from functional??
Posted 1/13/2014 4:03 PM (GMT 0)
Me too. Me too. I've been on the stuff for over 20 years. The lowest I've ever gotten to was 2.5 while I was in remission. But I've had the same experience as you that every time I get to a certain point, usually 5mg, I flare again. I'm also on asacol and have been on other similar meds as you - biologics, 6mp, etc. How long are you waiting to taper in between dose levels? A week? A month? Several months? My only suggestion to you would be to try to get your CD a little more under control through dietary changes (if possible) and then taper SLOWLY! Like literally drop 1 mg every month or two. Have you considered seeing an endocrinologist ? I recently tried to taper too fast -stupid me - and threw myself into an adrenal crisis. It was horrible! You want your guts AND your adrenal glands to cooperate. I feel your pain, I really do. I hope you can get it figured out. There's nothing like the blessing and the curse of prednisone. I know it all too well!

P.S. if you are on budesonide and have any plans of eventually stopping it, I would suggest tapering from the budesonide first before you taper from the pred. I know budesonide is locally acting and not systemic, but it also affects your adrenal gland and because it's in 3 mg increments you won't be able to taper as slowly as pred (1mg increments) so for the sake of your adrenal gland that might be something to consider. This is why an endocrinologist might help. Good luck!

Post Edited (Stef17) : 1/13/2014 9:06:43 AM (GMT-7)

Posted 1/13/2014 6:20 PM (GMT 0)
Thanks for the responses. Overall the Meds have kept cd "under control" for the most part. I'm against surgery unless its last resort. I've seen supposedly the best gi docs in the country. Who knows though. I'm game to try other Meds and we have but maybe there are otgers
Posted 1/13/2014 6:47 PM (GMT 0)
Overall the Meds have kept cd "under control" for the most part.

Whatever it was like in the past, it sounds like it's only the steroids which are having any effect now. I stopped Humira some weeks before surgery, and it made no difference whatsoever: the steroids were the only thing stopping me from relapsing.

I'm personally not too impressed by things like "best GI docs in the country", but I've been soured by my own experience. It's not relevant, so I won't go into it: suffice to say, while I suppose "best" GIs and "best" hospitals have to get their reputation from somewhere, it doesn't always seem to translate into higher-quality treatment for the patient.

Anyway, if there's anything else left to try before surgery, then I really would try it. Personally I'm not optimistic, but then I never am. God, what a choice we have to make sometimes: cutting out our intestines or staying on the world's most awful drug. Dire.
Posted 1/14/2014 12:50 PM (GMT 0)
Yeah that's why I said who knows though. All you can go by initially is docs rep, word of mouth etc. I've been to Hopkins, mayo and have seen some great docs here in az. Some I like/d...some I did not. As long as the doc listens to me and can think outside the box at times I'm game to try. But I also need to do a better job of researching current Meds etc. I know it's a lame excuse but I'm so busy with work I have no time. I'd love to stop all Meds to see what would happen. I guess the only way to tell is to stop one stva time to see. Doc wants me to take humira antibody test but had to wait until after 1st of test.
Posted 1/14/2014 3:43 PM (GMT 0)
I am moving to AZ soon to take another position with having to get another drs take on long term predisone usage--The problem I had when tapering was trying to cut down the pills...with the pill cutter I was unsure on the dosage I was really getting--the lowest I have been on is 5mg and started flaring--I am stuck at 10mg right now--but 7.5 works so I am headed down to that dosage--My doctor told me 7.5 is the magic number to run things with the adrenals shut off--I was hoping for them to give me another drug to ease the coming off with years of my adrenals being shut down--I admit I have side effects but there was a time I was not functional--I just want better drug options without it disrupting my life more than it does--I do think it is important to watch your diet when tapering--I have a problem with any dosage over 20 mg when they try and raise it--I was told to stay on 50mg and taper down last summer during an incident--could not tolerate it all--the gluten free diet cleared up alot of my CD gastritis symptoms--Since predisone, I can eat fruits and veggies as long as they are not too fibrous--
Posted 1/15/2014 3:38 AM (GMT 0)
Hi. Welcome soon to AZ! Let me know if you need the names of any gi's etc. food has never been a real issue other than really spicy which I used to love and liquor which I used to drink my fair share of as well. No liquor in years now. Fruits and veggies are not usually too bad in fact I'm trying to lose some weight and get in a bit better shape so I've been eating tons of carrots cukes and yellow red and orange peppers. Usually twice a day. Are there drugs they can give you to help boost adrenal function? I prob have none at this point along with no immune system. Something else that scares the crisp out of me. I'm going to try getting down again. I've been on 12 mg for a few days now. I'm just going to go slow. I have a HUGE certification exam for work in a few weeks and studying is impossible. I have no memory anymore and no concentration. These Meds have seriously screwed me up. I guess it's better than it might be without but there's got to be something out there Thst will work like pred and let me live my life without side effects. My doc said I'm the poster child of why not to take pred long term. I've got some f'd up stuff going on cause of it. Oh yeah. The paper thin skin is another good one. If I scrape or cut it my skin just splits open. My parents retriever scratched my leg a few months ago and the blood spurted 3 feet in the air and the wall/floor looked like a homicide scene. It's still not healed all the way either. My wife won't let me leave the house in shorts or short sleeves cause she says I look like a drug addict from a of the dog scratches. Yes we have dogs all around and I love em to death-- hopefully they don't kill me. Hahaha. Sorry but I can't stay serious all the time. If I did I'd prob add some anti depressants to the mix as well. So here's a question. How many individual pills do you all take on a daily basis. Not scripts but pills. This ought to be fun. I take...36/40 including probiotics, Meds and vitamins!!! Holy crap!
Posted 1/15/2014 3:24 PM (GMT 0)
Well, it looks like you joined the board around the same time I did...I am 43 and I have no immune system and I don't heal well and seem to catch things easily that is going around--I have had skin changes, memory changes, hair changes, and teeth issues to say the least--I use to take a ton of natural supplements(still have a ton in a box)--I am just taking a large mutli vitamin and liquid B--I am using essential oils at different times of the day so I smell really funky..I am just taking RX predisone, blood pressure med, and thyroid med at the time--I have boxes on RX that I have not thrown out over the years--predisone allowed me to start eating more normally--and gluten free helped my symptoms--I really do better with a more unprocessed diet with more fruit and veggies--got good stuff year round when I was in Vegas hope to find the good stuff again in AZ--headed to Tempe for a new company and position ,which at my worst before predisone I had a hard time with any kind of normal functioning--and could not eat anything but meal replacement shakes and baby food--I did have a tooth pulled a year ago that took months to heal up--along with getting over any infection, virus, and flu--I think the weather should be similar to Vegas--I am in Oklahoma right now--I have not had good medical care since I left Springfield MO and was under the care of an autoimmune specialist. My GI experiences and many pcps have not been good so any help would be fantastic in managing the doctor maze..It is hard to lose weight on predisone. I have had to real serious time off work since 2006-2007 due to this dd--I have completed my degree and made career moves--I do get tired much easier as well--I want to head to 7.5 mgs before I leave--I had two job offers come in at once one local not as good of a position and the other much better position in AZ--had to make a choice--I am not getting any younger either--
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