Prednisolone tapering advice for Crohn's

[sam235corner]

My son has recently been diagnosed with Crohn's. He began taking 8 tablets and started tapering on Friday to 7 tablets per day.
The last 24 hours the stomach cramps have returned, he thinks it is the tapering. Should he stick with 7 tablets as requested or go back up to 8 tablets until the cramps have subsided and then start tapering?
He's very down today. Thank you.

I sympathise. Getting Crohn'd into remission can be tricky but there are various options.
I'd seek advice to be honest. Did you get an IBD nurse or IBC contact at the hospital?

Maybe ring out of hours for advice, or the Crohyns and colitis line. You should've been given leaflets and things with numbers on when he was diagnosed. There's no guarantee that going back to 8 will cure the pain so I would stick to 7 today.

Thanks for your replies. We didn't receive any leaflets (I was there at the consultation), or information if the Preds stopped working.
Hopefully the pain will subside in the next day or two. His next appointment with the IBD Consultant isn't for another 3 weeks or so.

I would stick to the 7 and try to get advice from an out-of-hours service or 111. Steroids can be dangerous so I wouldn't use them off-label.

I had the same problem after being diagnosed with Ulcerative Colitis two months ago. It turned out that the steroids weren't really effective for me and I have now been prescribed biologics and immunosuppressants, which have had a magic effect. Since taking them I have been able to taper the steroids successfully am and now down to 10mg.

I can't say what your son should do as everybodies case is so different, but your hospital should have a dedicated IBD nurse who is the first point of call for questions like this. Another source that has really helped me is Crohn's & Colitis UK a charity who were recommended by my IBD team.

Wishing your DS the best of luck, I know how depressing it is when you think the treatment isn't working.

It can be difficult trying to reduce steroids without relapsing. What dose are the tablets?

Hi there. I'd ask advice before upping the steroids as tapering down of steroids I think is quite precise. Does he have an IBD nurse that might be more accessible? Or you could call the secretary to pass queries onto the consultant until the next appt.

My son was diagnosed 12 months ago. We left with an armful of booklets. His treatment was a liquid-only diet for 6 weeks then onto steroids; 8 steroids a day, on a tailing dose over 9 weeks (I think). It took sometime for his pain to completely subside. As the steroids were tailed off, immunosuppressants were started (azathioprine), and now is also on immunotherapy which has been really effective. My son was 14 so we had a lot of support from the hospital over the first few weeks particularly the IBD nurse. Other parents find the CICRA charity helpful

I sincerely hope his pain subsides and his Crohn's will be pushed into remission. Wishing him and the PPs with UC/Crohn's all the best.

Things have got a bit worse for my son. He's had watery diarrhoea for 24 hours and sickness.
His consultant is away until the end of the week, i've got no other point of contact. I'll make an appointment at the doctors this morning because I'm going to presume he won't' keep the steroids down today.
At the moment we're sticking to the dose he's been told to take.

Your poor son.

If I were you, I would phone up the hospital and ask to speak directly to the consultant's personal secretary to explain he seems to be getting worse.

The consultant must have a team he/she works with and maybe someone else can see your son.

I there, just seen the update, hope the GP was able to help.

Agree with Molly, the consultant probably has a registrar to answer queries in their absence or ask if the med sec can ask another doctor.

Also, try and find out who the IBD nurse is as the first few weeks/months of being diagnosed can be rocky as they find out what medication works best for him. Some offer a telephone helpline.

Paracetamol and a hot water bottle really helped my DS with pain.

Thanks to everyone's advice and support, it means a lot. My son contacted the IBD nurse at the hospital and she was super helpful, very relieved!
He seems to be getting over it now, we think he picked up a bug from somewhere. He's hardly been out but unless it was some dodgy food it definitely seems a stomach bug is the likely reason.
He's probably lost all the weight he gained last week (he's lost 10kg in total). But onwards and upwards!

Hi there. Glad he is feeling better and he has a name and a point of contact at the hospital for any questions/help.

Hopefully the steroids will boost his appetite and he can regain his lost weight.

One of the problems with IBD is that every tummy bug/virus that anyone else, without IBD, would ride out can be thought of as inflammation/relapse when it can be something completely unrelated. He will learn to understand and manage his IBD.

Hope he continues to feel better.

Glad your Ds is feeling better, OP.

I’ve been down the steroid route and always take them by the book. Would never up the dose again.

It’s good you’ve got the IBD nurse as a contact now. My IBD nurse has proved invaluable and even though I sometimes have to leave a message she always gets back to me.

I have Crohn’s and unfortunately the steroids only worked as a sticking plaster for me. I’m currently taking the biologic route.

Good luck for your son and I hope he manages on the steroids and has good results, they really do work for some.