Hi everyone, I a am newly diagnosed 39 year old woman; I have crohns in the small bowel and my consultant started me on 40mg pred 5 weeks ago, currently tapering down over 9 weeks.  I felt much better initially but as dose has come down my symptoms are returning, also finding the side effects very difficult.  Doc is putting me on an imuno suppressant shortly.  Has anyone had similar experiences with pred and will I have more success with the imuno supp?  How long after finishing the pred can I start the imuno supp? Any advice is appreciated - thank you

Hi there, You can be on pred and an immo suppressant, so you could start it as soon as, yes i have the same problem, as soon as i get on a lower dose of pred (10-15mg) then i seem to flare up again. Good Luck

Ditto, although Prednisolone usually works for me, giving remission for some weeks after the end of the course this is not always the case and the last time I had it the symptoms returned before the end of the course. Apart from the first time, I have stayed on my Crohns treatments while taking Pred so don't worry, it's not a case of one or the other.

Nigel

Thanks to you both, it's reassuring to know it's not just me. The consultant did mention that he felt I will need to start a drug called Azathioprine in the near future. Has anyone had luck with this drug? I believe fatigue is a major side effect initially and I'm worried about this because fatigue has been an overwhelming symptom for me, so much so that the doctors where convinced I had ME! I really appreciate all advice, it's great that places like this are here for support. Crohns seems to have such a varied array of symptoms and it's difficult at times to believe it's ever going to get under control! Thanks again.

Hi, I was diagnosed with crohns two years ago and I was put on Prednisolone. I tend to get bad flare ups every three or four months, usually after the prednisolone course has finished. I also feel very tired all the time and I am struggling to come to terms with the fact I can't do everything that I want to. I used to walk for miles with my dog but I just can't manage it any more. I am starting on Azathioprine on Friday so I will let you know how I get on.

Thanks for your message Dawn. I know exactly what you mean about the fatigue, I used to be so fit! I have a gym at home (no longer in use) I exercised daily and loved long walks. Now I feel exhausted all the time, not sure I've been out of a flare up yet, it's been a long journey getting diagnosed and it's really took it's toll on my overall health. I can't imagine ever having the energy I had before crohns but I remain as positive as I can. I wish you the very best of luck with Azathioprine and please do let me know how you are getting on.

I haven't found fatigue much of a problem until recently but then I was always a bit of a couch potato! I'm not sure if it was the strange combination of Mercaptopurine and Allopurinol that got me or whether it was the anaemia sapping my energy but either way I struggle to stay awake past 9PM now and it's a race between my 9-year old and I who gets to bed first. I am hoping that coming off those two drugs will solve the problem shortly and allow me to return to my late-night Internet surfig and TV watching .

Hi, I have been on Pred, tapering off, since November and on immuno suppresant, Methotrexate, since January.  Things have been better but I'm not sure if that is due to the steriods or Metho.  I still have bad 'loo' days but not so many. I am also following a low fibre diet (boring) so that also may be helping. The only thing I have found since starting the Metho is that I am very tired, hardly up after around 9pm and when I get tired I get a sort of fluey feeling with aches and pains.  I also think it has made me feel cold, not bad considering I am of an age of 'personal summers'.   Not sure what the future will hold when I come off the steroids but am hopefull, it would be good to have a 'normal' life and be able to go out for a day without worrying.  Anyone remember what that is like ?

I do not believe anything can prevent the lethargy and tiredness (It's a part of the condition). My consultant informs me that Prednisolone helps reduce inflamation and a (good) side affect is increased energy levels. Long term use of "Pred" prevents your body from producing its own "steroids" hence the tapering down. The problem is that the steroids mask inflamation over your whole body and so when tapering down (stopping) steroids your body has to get use to producing again, hence the aches and pains and onset of more tiredness and lethargy. Now I know why steroids are banned in sports.  

Smurf

Hello again, thanks for all your comments. Went to see consultant yesterday, wanted to admit me for I.V steroids but I was reluctant. As a compromise prednisolone lifted back to 40mg and started Azathioprine. Back next week for review, already improved on higher dose of steroids. Hope you are all doing ok.

Quoted from Chihuahua

Hello again, thanks for all your comments. Went to see consultant yesterday, wanted to admit me for I.V steroids but I was reluctant. As a compromise prednisolone lifted back to 40mg and started Azathioprine. Back next week for review, already improved on higher dose of steroids. Hope you are all doing ok.

So hows it going now.
I was on drip steroids last time in hospital.
They worked well.
How long would you have to stay in for.

hi i was put on 40mg pred on march and 100mg azathioprine.  When i was admitted to hospital in march i was diagnosed with crohns in small bowel and put on IV steriods for 7 days, i returned home with 40mg i got down to 30mg and ended up back in hospital for 2 nights in terrible pain i was put home back up to 40mg.
I then got down to 30mg again about 3 weeks ago but to get symptoms returning was put back up again to 40mg.

Yesterday i was down to 30mg and today not feeling terribly sore but notice the difference compared to few days ago, feeling tired and the growling and cramping in my stomach is intense and unconfortable more than painful.  The plus side is the azathioprine has been fine so far and should hopefully be into my system end of next month.  And hopefully i will gradually wean of the pred.  

xx

Hi, I was on just 40mg pred initially to control symptoms when I got diagnosed, then put on to Asacol when they finished.

I've been back to the colitis clinic again this week as a flexible sigmoidoscopy showed I was in flare.  They've put me on 30mg pred and Azathioprine, stopped the Asacol.

I've only been on the pred 2 days but I can tell it's already working its magic - I'm 'hyper', with the shakes, and my diarrhoea has already considerably settled!  The Aza makes me nauseous and gives me stomach pains, back pains and stomach growling (apparently very common side effects) but these symptoms should settle.

I seem to have a not so common side effect to the pred though.  I already have joint problems, mainly in my knees, and they are killing me!  I got this last time I was on the pred.  I have supple joints so they overflex and starting yesterday I have to go upstairs one step at a time as my left knee will not support me.  My right knee aches too but not as bad.  I dug out my knee support this morning so that helps.  Also my lower back especially on the right side gives me stabbing pains when walking.  Dunno whether this is because the meds are trying to make me better!  

Also started Citalopram this week for depression, I've checked with the doc and there's no reaction with the pred and Aza, but been told the Citalopram can also cause joint pain, and while this is an 'uncommon' symptom it's not gonna help!  I hope it settles down for next weekend as I'm going to London on Saturday to the Allergy UK show and then doing the NACC York walk on Sunday!