Prednisolone Side Effect Tapers for Crohns Disease
Posted , 5 users are following.
I have been locked in vicious circle of taking pred for crohns disease for the last four years. I would get down to under 10mg and then begin to get symptoms and would ramp back up again to 40mg and start to taper down week by week.
The symptoms I had were gut pain, extreme tiredness, headaches and my eyes would always flare too.
I recently had another resection and then the decision to have a stoma was made to give my large intestine a chance to rest. I was still on steriods as I had the surgery and was told to taper off gradually after.
I am now on 4mg pred and whilst my gut is generally better I'm having real problems with my eyes and tiredness. I know if I bumped the dose up to 10mg again this would stop but I want to know has anyone experience the eye problems with pred? No one on these forums seems to have the same as me. It's really knocking all my confidence down because the first thing people see when they see me is a very tired looking, red eyed mess. Will this ever resolve and is it the pred withdrawal making this happen and is there anything I can take to help it?
I just want to get off the steroids but they've been the only thing that has relieved the crohns symptoms, any advice would really help as doctors dont seem to have a clue!!
Cheers
0 likes, 4 replies
EileenH AJS1984
Posted
Have you discussed the eye problems with your optician? Maybe you have dry eyes? That can happen with autoimmune disorders and with pred.
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
is a slow way of tapering and it might help you get lower and possibly even off pred.
It isn't really pred withdrawal - that is when you try to reduce the dose in too big steps - but it is due to reducing the dose of pred. After you have been on pred at above 10mg for any length of time your adrenal glands slow down and stop producing cortisol because the body knows there is plenty of corticosteroid in the body.. It needs the equivalent of about 7.5mg of pred to function properly, it is essential to life. As you reduce the dose of pred, the adrenal glands have to start producing cortisol again. but that is a slow process and slower in some people. It is easiest if you reduce really slowly but steadily - the only thing that triggers the production of cortisol is there not being enough. Not enough often causes fatigue - and that is probably what you are experiencing. If you can get to 5mg and stick there for a few months before continuing to a lower dose it sometimes makes the rest easier. Just reducing 1/2mg at time should also make it easier. So I'd suggest going back to 5mg if it helps the fatigue and wait a few months and then try a slow slow step down.
Once you get to 3mg you can ask your doctor for a synacthen test which will show if your adrenals are capable of working on their own - if they are it is just a matter of patience. There is no other way, just sit at a dose that s a bit too low and wait for things to start up again on their own.
AJS1984 EileenH
Posted
I've gone to eye specialists about this and no one gives me a definite answer on it. Some have said it's linked to other inflammtion in the body, I've heard episcleritis, I also have tried drops for dry eyes too, I just dont know what to do anymore.
I'm tapering down by 1mls a week at them moment hopefully once i'm off these pills things will improve
peggy_56092 AJS1984
Posted
Dropping 1 mg a week is too much. Reducing by 1/2 mg, taking about six weeks or more to accomplish, and then staying there for a week or two. Otherwise you will start the yoyoing up and down with the pred. I use the Dorset Lady's reduction method shown in the online address offered in ElaineH's response.
I too have dry eye. My eye dr gave me a mask to heat up in the microwave to put on my eyes for five or ten minutes and then adding lubriquent eye drops after once or twice a day.
EileenH AJS1984
Posted
If you are on pred because you have PMR then reducing at 1mg per week is just asking for trouble. You aren't reducing to zero - you are looking for the lowest dose that works as well as the higher doses. At 1mg per week you will have no idea where you reached that - because it often takes a couple of weeks for the flare to develop as the inflammation builds up far enough to cause symptoms.