Prednisone tapering

[AIjen]

prednisone tapering

I am discovering that as I taper off the Prednisone (I started at 40 for about 4 weeks, then went down to 30 for 2 weeks, and am now on 20 and will have been on 20 for 2 weeks, then down to 10, etc) the pain is coming back. Not necessarily the pain of a BM (though a little of that is coming back as well), but the pain from my fibromyalgia and probably pain from my other autoimmune stuff. I'm assuming this is normal? Anyone else notice that their "feeling" came back as they tapered off? Well, it was good while it lasted anyway.:smile:

 

[teeny5]

Tapering off Entocort has caused much of my pain to come back. I miss the month I had that was pain free.

I would assume it is totally normal for this to happen. Sucks doesn't it?

 

[soupdragon69]

Yep my skin flares with sebhorreic eczema and itching, my joint and muscle pains return. I also have a period where each time I reduce my gut and asthma flare for a few days then settle again.

So you are not alone!

 

[Colt]

Wow soupdragon, you've got a skin condition too? We're like twins I tell you. Mine's flaring now that I'm down on my pred. Quite embarrassing really. Where is yours? Mine's on my face. It's part of why I always keep a beard (to cover it up). It still shows flaking off of my nose and between my eyebrows though.

 

[My Butt Hurts]

I wonder if going down by 5mg instead of 10 would help you any?
Ask if you can try something like 40 mg for 4 weeks, then 35 mg for at least 2 weeks, then 30mg for 2 weeks etc. Sometimes it seems to help if you come off of it slower.
All of my pred tapers were 1 week at each dose (staring 40 and dropping 5 mg) , but I stretched my last one to go 2 weeks at each level. They all worked really well - but I was also on other meds at the same time.
Good luck - I hope you feel better.

 

[soupdragon69]

Erm I have FIVE skin probs Colt lol

Roseca, sebhorreic eczema, folliculitis, steroid induced acne (the joys of pred and IM injections over the years) and hidradenitis suppurativa.

The first affects my face only, the second my upper back up into my scalp, across my upper chest below my collar bone, and the sides of face and forehead. The third is where the hair follicles anywhere in the body can become infected and irritated but usually where my eczema is and areas us women deplete! The fourth is back, face and neck. The last one is thighs, underarms - again womens areas lol and across my chest. Had a cyst removed from a breast last summer due to it constantly reinfecting.

I cant shave or use depletory creams as they make my skin so much worse. I wax instead LOL The hair regrowth then is slower and also tapered as opposed to blunt so less likely to cause me problems. I did go for laser hair removal a couple of years back before all the crohns meds and cant do it now but it did help.

I have a topical antibiotic for when the 5th skin problem flares as it causes abcesses and boils that are excruciating and need surgical drainage. So although I dont have abcesses gut wise I get my fair share skin wise and have had them since my late teens but only diagnosed 07 finally thanks to Dan Bergy here.

Dermatology have left me with an open appointment so that if I need review I can just ring and ask for one. Otherwise I just manage it all myself via various creams, lotions etc etc.

I agree with you MBH about slowing the taper down and it helping reduce side effects withdrawal wise. It does help at times. I am hoping to stop my pred Monday week - fingers crossed....

 

[Wolfie]

I've been off Pred for almost 3 weeks now. I tapered very slow.My problem id my hips and knees are killing me!! The last time I tapered my knees hurt , but the pain went away. Now my hips are just killing me,I feel like an 80 year old man.I don't know whats going on and how to get rid of the pain.

Help this 40 going on 80!:

 

[cheeky]

how come my tapering is gonna be quicker? maybe because i'm on a dose of 40 mg for only 2 weeks? then after the 2 weeks, i'll be tapering off by 5 mg a week, til finished... hmmm, hope it doesn't 'shock' my system to decrease the dose each week instead of every couple weeks.

 

[Colt]

There is no official rule on how quickly to taper. Your doctor is supposed to be monitoring you and slowing or speeding the taper depending on how your body is responding. Few doctors are as diligent as medical guidelines tell them to be though. Instead they pick a dosage change and how often they change the dosage just based on what sounds good to them. There's a huge variation in that.

 

[Chuck2008]

Hi Wolfie,

Sounds like you're in the same boat as me. I am 38 going on 80, or I felt that way before I started prednisone in mid december (been on 40mg/day every since). Honestly I'm loving this prednisone, I've never felt this great in my life. I have a ton of energy (mania I guess some might call it), all day long I'm working on my business, cleaning the house, enjoying my hobbies, eating like crazy and enjoying food like I never have before. I can't sit still anymore! No aches and pains, iron stomach. Back in december (before the crohns diagnosis and prednisone) I was riddled with arthritis in all my joints so that I couldn't even walk up the stairs. I had nightswears, diarhea for 3 months with 30 pounds of weight loss even after eating 5000+ calories a day, it was terrible. The very same day I started prednisone, all but the bowel symptoms went away. 2 days later I was 100% stomach ache free and the diarhea and gas were a distant memory.

I have an appointment with my specialist in a few weeks and I suspect he's going to suggest tapering me off this stuff- but I'm really dreading it since these pills have given me back my life and so far, with no unpleasant side effects except for a bit of insomnia and an occasional/weekly angry outburst against someone who probably deserved it anyway

From reading these forums it doesn't sound like there is anything nearly as effective as prednisone, especially in my case with the less common arthritis symptoms.

My question to you is, did you have the knee and hip pain before the prednisone, and then you're saying it came back when you stopped using it? Thats what worries me, I can't go back to where I was a month ago :yrolleyes:

Chuck

I've been off Pred for almost 3 weeks now. I tapered very slow.My problem id my hips and knees are killing me!! The last time I tapered my knees hurt , but the pain went away. Now my hips are just killing me,I feel like an 80 year old man.I don't know whats going on and how to get rid of the pain.

Help this 40 going on 80!:

 

[cheeky]

guys help! i'm really getting nervous about being on prednisone, i've only been on it for 6 days and i feel fine, but i keep reading about all these crazy side effects and it's freaking me out!!! REALLY REALLY freaking me out, i can't stop worrying (some of you may laugh and think i'm silly cuz i know i haven't been on it as long as most of you and haven't had any bad side effects, but i can't help it - i'm scared!) ... i REALLY don't want to be on this drug anymore! i'm supposed to continue on 40 mg for another 8 days before i begin to taper, but now i'm seriously considering beginning to taper a week early... so that means i'd have only been on pred 40 mg for 7 days (as of tomorrow) then as of friday, i'd like to drop to 35 mg and so on...

do you think this is bad? can it cause a problem?

any advice would be MUCH appreciated, especially prompt replies since i'd like to make this change by friday.

thanks!

 

[cheeky]

i think i'm gonna call the pharmacist now actually... but still, i'd appreciate your feedback!


edit* ok just talked to the pharmacist and was told the main risk is that my symptoms of crohn's may come back... i dunno man, i think my crohn's symptoms were beginning to calm down before this med anyway... so to me, i'd rather go through that than take this drug anymore... plus i have an appointment @ the naturopathic doctor this tuesday anyway... i'm all about alternative treatment... these drugs are REALLY not my thing!

 

[MINI Cooper]

oh great. Side effects from tapering too?? Like the side effects werent
bad enough while on it? ::Sigh:: another thing NOT to look forward to....
:voodoo:
well, after the IV steroids I had HORRIBLE joint pain, but I figured
it was because the IV was more potent.
I start tapering tomorrow. Probably starting Remicade soon.
Stupid Pred....

 

[robbo87]

i was on 40mg for a week, today is my last day of 30 and tommorow i go down to 20 for a week. im in the same boat as chuck, or have been until yesterday. never felt so great, been eating like an absolute pig, really happy and not felt so energetic and good in a long while. i decided to go on a nite out on saturday even and have a few drinks which is maybe why im feeling a bit rough at the moment. i have stomach pains again and im feeling a bit more fatigued than i have, aswell as a dreaded mouth ulcer, but its just one for now and hopefully no more will crop up. could this just be a mini flare maybe due to having a few drinks or could there be more to it?

i seem to be on a much quicker taper than everyone else, and i see the specialist for the first time a week today as ive only just been diagnosed recently so i think i will have my meds changed. not really sure whats going on!

cant say ive had any bad side effects though tbh..bar getting slightly angry over nothing now and again, but i can be like that anyway! lol