Tapering prednisone

[Floss]

Hi all,

Recent diagnosis of Crohn’s (Mid January 2024) after being hospitalised a few times since October with obstruction.

Currently 3 weeks out of hospital, on Azathioprine for about 6 weeks, starting Infliximab tomorrow (initial infusion given in hospital on 20/02 but had to wait while application went through) and tapering off prednisone.

Asking how others have tapered the last 5 mg as last time I got to 5mg, I went to 2mg and felt terrible. Aching, tired and generally awful. Then I had another obstruction so that sort of solved the problem…or at least delayed it until now

Since my most recent hospital stay, I have been tapering at 5mg every 5 days and am now down to 5mg per day. However, the hospital hasn’t noted how to manage this last 5mg.

My thoughts are to come down 1mg/5 days to avoid falling off the not enough cortisone cliff.

Does anyone have some experience/insight/ideas to help with this?

Thanks
Floss

 

[Entchen]

Hi Floss: In the past I have simply stopped taking the drug once I reached 5mg in the taper. However, your idea to take your time reducing from there makes sense, provided your medical team knows you are taking it alongside the infliximab (just so everyone is in the know). Your pharmacist is one resource option here; I find they are more familiar with the taper process than most docs. Hoping the infliximab works well for you!

 

[Floss]

Thank you for your reply Entchen I didnt give the pharmacist a thought and I have to go to the pharmacy tomorrow. Will have a chat with them and thanks again!

 

[my little penguin]

Talk to endocrinology
When you have issues stopping a wean at 5 mg
They can help give you instructions on how to wean slower from 5 mg
Abd how to test for secondary adrenal insufficiency which can happen when given steriods and stopping
My kiddo has to slowly wean from 10 mg down
He also had secondary adrenal insufficiency
Thankfully hasn’t had steriods in years

 

[Floss]

Talk to endocrinology
When you have issues stopping a wean at 5 mg
They can help give you instructions on how to wean slower from 5 mg
Abd how to test for secondary adrenal insufficiency which can happen when given steriods and stopping
My kiddo has to slowly wean from 10 mg down
He also had secondary adrenal insufficiency
Thankfully hasn’t had steriods in years

Thank you My Little Penguin, i was wondering if a test was available, appreciate your advice

 

[Guerrero]

Hi Floss, sorry I never been to under 5mg.
Hope you’ll feel better this time.

 

[cheka]

i cut by half mg increments, all the way down to zero. 1 mg prednisone tablets, cut in half. i took 3 months to drop the last 5 mg. was also taking licorice supplement and adrenal supplements to help

 

[Tony H]

It was a while ago now but like Cheka I went down .5mg a week ,took a while but worth it , pred is a devil med but it's also a life saver , any time I got into trouble I upped the dose slightly again and kept going , best of luck and don't give up hope

 

[Floss]

Thanks to all. Ended up with a bit of a hiccup at the start of April and had to increase steroid dose to 25mg per day. Tapered again and down to 6mg as of 2 days ago.

Finished 8 weeks of EEN on 26th March and back on low fibre foods. Loading doses of infliximab complete now too. Bloods all good (CRP <4, WBC <11, Neut elevated 9.1) but Calprotectin increased from 118 in Dec 2013 to 536 in April - that was disappointing. However, I feel the best I have since September last year when I was first diagnosed and that is wonderful!

Spoke to the pharmacist, and as per advice from Tony and Cheka, I will take the last 6mg down by .5 every 5 days and hopefully be free from the steroids by the end of June.

Thanks again to all