coming off prednisolone

mini5

hi all

just wondering has anyone any tips for coping with prednisolone withdrawl. I am on 20mg now from 40mg (and 2 weeks of IV steroids in hosp) and am really feeilng it. apart from my colitis starting to get worse i feel really achy all over, sometimes my body is freezing but my face is really hot (but i don't think i have a temp). I am going for surgery in a few weeks so have to get off it...i am looking forward to no more pred after surgery...

anyone have any similiar experiences?

thanks

dloob

I've never had much problems comming off it. I'm comming off it at the moment as well I'm on 10mg down from 20mg and a week of the IV steroids, no problems so far apart from the colitis making it's presence felt now and again.
I've been reducing by 5mg every 2 weeks.

I have had problems going on it, especially the first time when I would get cold sweats and insomnia, waking up freezing and soaked with sweat doesn't help you sleep, I also had really bad knee pain for a while, I'd be barely able to walk after getting up and it would only go away after taking the steroids.
I always seem to get some acne on my back and chest while on it as well but it dissapears as the dose goes down.

I've seen advice to take the dose first thing in the morning as that's when your body would be producing the most cortisone, don't know if that is much help when comming off it?

I guess all I can say is stick with it and you'll get free of them. The side effects are pain but they do work.
Good luck with the surgery.
I was almost going to be having it myself for a while there, but I'm going to stick with the medication for now. I started on Imuran a few weeks ago and hopefully it can keep thing in check.

angeldelight

I'm not sure how long you have until your surgery, but could you speak to your docor about the possibility of coming off it more slowly - it could help to reduce symptoms a little if you have sufficient time before you need to be off it..

best of luck with the operation

The_Conductor

Its difficult coming off it.
I'm on 20Mg myself at the moment (down on a tappered dose from 60Mg). I can relate to what you're saying about about temperature fluctuations, feeling really hot, aches and pains all over, bloated etc.

I don't think there is a secret formula- its a case of what works for one person may very well not work for others.

I'm drinking as much fluid as possible, and trying to make sure that any solid food I eat is easily digestible. I still am running to the bathroom every 40 minutes or so, and getting up during the night- feeling that I need to go, whether I do or not. I am taking Panadol to try to control the worse of the temperatures (102 is about normal for me at the moment- which is difficult when you have to try to get work done).

Outside of that- simple little things help- a small table fan to cool your face, extra sleep if possible (or even lying down and resting if you can't sleep).

One thing I have noticed- is if you take your prednisolone in the afternoon- after perhaps 3.30 or 4PM that its almost like taking a double espresso- it makes it extremely difficult to sleep at night.

Another thing- I seem to be very very tetchy while on prednisolone- simple little things that I'd joke about normally turn into squabbles very easily. You just feel under the weather and cranky as hell

Nalz

Rather old thread but reopening out of curiosity. Have a rare disease which can be very manageable most of the time called Churg Strauss Syndrome... with the aid of prednisolone.

Having said that I find it very hard to come off it and have been taking it constantly for 3 years now. Currently attempting 10mgs p/d having had a recent flare which caused me to take 40mgs one week and 30mgs for two weeks.

I find it v difficult to come off it and its keeping me alive to be honest! I also find the side effects (mood, weight gain especially) annoying.

Anyone experiencing anything similar or have any tips? The net is full of ideas from drinking water to staying active as much as possible but these are the cure for everything!

Thanks,
Trilla

The_Conductor

You really need to talk to your consultant about a management regime other than longterm corticosteroid use- Imuran and other common Crohn's medications are often used in cases like yours- but you really need to get an appointment to discuss this with your consultant at as early an opportunity as possible.

With respect of problems coming off the Prednisolone- its a nightmare trying to come off (I've been on 6 separate courses this year so far, and its only April yet). If you've been taking it continuously for a number of years- you may need hospitalisation and assistance with perhaps hydrocortisone while adjusting to a new regime sans prednisolone- but once again- this is something that you really need to sit down and discuss with your consultant.

I'm not trying to use scaretactics- but you do not want to be a 37 year old with osteoarthritis of the knees, ankles and fingers........ You *need* to get an appointment with a consultant asap.

Nalz

smccarrick wrote: »

I'm not trying to use scaretactics- but you do not want to be a 37 year old with osteoarthritis of the knees, ankles and fingers........ You *need* to get an appointment with a consultant asap.

I have been, monthly and bimonthly for years in Connolly hospital. I have been on imuran and taken off it again... I've been down to as low as 5mgs pred p/d at one point but get constant relapses if I go that low for a period of time. My blood results, symptoms and tests have been referred and discussed in many hospitals.

It can get a bit depressing I won't lie. From the small things like I notice on the very rare occasions the past 4 years I'll snap at people or just get a bit pissed off for no reason, or my appearance due to increase in weight, tor the relapses and asthma/rash flare ups which need to be constantly dealt with using steroids.

I hear what you are saying, I wish there was better alternatives. I think I'm doing my best to stay positive and to a lot of people they think nothing is wrong with me (apart from being a nark now and again). In fact I'd say the odd think I'm faking it all or playing on it a little. Its the opposite I missed over 40 days work in 4.5 years in my current company, not good.

Maybe the answer is to go abroad and get better assessment.

Thanks for the reply btw!

The_Conductor

There are new treatments out there- if you have a look at the general autoimmune field, medications for one disease/syndrome very often are at least as beneficial for another (Humira for example).

I was on prednisolone for years too- but only use it for occasional flareups now- though longterm usage unfortunately has many side-effects that weren't properly explained to me at the time.

I understand that your condition is incredibly rare- but would it make sense to get a fresh assessment from a consultant elsewhere (maybe London for example?)

Nalz

smccarrick wrote: »

(maybe London for example?)

Will need to do some research. I have been meaning for years to do it, just kept faith in the current people overseeing it all.

Thanks again.