Tapered off Pred, feeling awful - is this normal?

[patsworth]

Hi

I was diagnosed last Jan as having Crohn's after years of a diagnosis of UC. After a bit of a rough time and flare in October I started my first lot of Prednisolone.

I began at 40mg for a month, then tapered. I got down to 10mg and symptoms returned so back up to 25mg then tapered again.

I finished Pred last week. Since then, I am extremely tired again. My shoulders, back, hips, neck and head ache. I did do some exercise last week but it doesn't necessarily feel like muscle pain, but more like the aching you get when you have flu (like a weakness?). And over the weekend I have had mucus and blood in stools again.

I've never been on pred. Is this normal? I'm planning on just getting on with it as I don't want more tablets. I'm back to my Gastro consultant in May and he has discussed using Azathioprine although he seems a little reluctant, as do I, about using this long term. I just wonder if others have had the same feeling?

 

[littlefreebird]

....yes, from my own experience and other peoples stories i would say this happens to the majority. its to be expected.
usually, when treating a flare up, the pred is started and just before the pred is tapering off - a maintainence drug such as azathioprine or pentasa etc. is started, the idea is that the maintainence drug is started when you are still well, without leaving a gap for symptoms to return.
you may feel reluctant yourself to add more drugs to the list but think of it as trading one for the other. pred isn't an ideal drug to be on for a longer period of time. and it is quite rare to find a person that has achieved remission and then is completley med free...there's the odd person but very very few, i personally would be wouldn't like to try it.

i really hope you're feeling better soon, sorry you've been having a rough time!
take care.

 

[patsworth]

Thanks for the reply, it's definitely reassuring.

I'm on Asacol but I'm not sure it is enough if a maintenance drug? I'll continue to see how things go and perhaps get back to doctor.

 

[Irene3]

Mid last year I felt the same. I had weaned Pred, and wanted to go 'all natural' to fight off candida. For weeks I felt worse and worse, and eventually I went into hosp, where I found out my inflammation markers were above 130. Below 5 is the norm. I had been on other things like nizoral etc before my natural 'cleans' of candida, but the crohns pain wasn't as bad as every other trip to hospital before hand, and I had no idea my bowels were in such bad shape.

So if it keeps going, at least ask a gp to do a general blood test.
Best wishes, and keep us posted xo

 

[ekay03]

Sorry to say yes. That is normal. Still important to keep your doctor informed. I take azo. Have been on it since 2000. I am still in remission. The trick is to get off pred and stay off it. Sometimes doctor try to tapar people off pred too fast. I kept rebounding until I took matters into my own hands. At 40mg I went down only 5 mgs a week and at 10mgs I began to taper down 1 mg at a time. The doctors said that this was nonsense, but it worked for me. If you continue to feel bad, suggest to your doctor a slower taper. Pred comes in 5 mg and 1 mg pills. Good luck to you

 

[Mendez0414]

unfortunately, yes

I finally got to wean off after being on it for 6 months at 20mg a day. Just dropping 5 caused me to be drained and I had NO appetite what so ever. It went away after 2 or 3 days.