Hi all --
Has anyone successfully gone through a prednisone/solone taper (to zero steroids needed)? While on Xolair, I went down from 20 to 5 mg in 4 months which was relatively easy; they checked cortisol after that, found it was normal, and gave me the go ahead to keep tapering. Within 3 days after I dropped from 5 mg to 4 mg, I am feeling really tired and have to drink 10 espressos to make it through the day. How long does one wait before deciding if it's worth continuing or not?
Cheers!
Unfortunately this is the case , you will have to go cold turkey somewhat , although I suggest you start to taper even more slowly , say 1mg every 4 weeks ..P.s… I was on a maintenance of pred 20-25mg every dis for 5yrs .. took me 12 months to wean down to 5mg .. where my cortisol bloods were undetected, so I’m now adrenal insufficiency and have to stay on steroids for life
Thank you, Mark. So, you are now on 5 mg a day? I was on 20 mg for 6 months, and then on 10 mg for another 6 months, so, I was hoping to be able to get off it (weight gain etc has been annoying).
I was maintained on 5mg whilst I was waiting to see an endocrinologist, he’s now switched me from pred to hydrocortisone which is more similar to what the adrenal glands secrete , I take in 3 dosages spread throughout the day and have to carry an emergency injection of hydrocortisone with me everywhere in case I go into an adrenal crisis ..The preds have ruined my body but for me there was no option my asthma is so severe .. but I’ve been on biological injections since 2017 . Xolair 18 months , mepolizomab 12 months and now Benralizumab.. I self administer my injections at home
I was weaned off my steroids as I kept having 5 day courses and then il be back to square 1. I’m week 5 of no steroids but I’m starting to feel unwell again! I feel great on them but I can’t stay on them
Casey -- was this the 20 mg 5-day course? I am on day 8 after going from 5 to 4 mg, and today was the first day I was able to make it through the day mostly OK. I hope I can stick with it!
The rule of thumb is with us, who use prednisone for polymyalgia rheumatica, is not to drop more than 10% of the dose- especially around 5 mgm and below at one time. The adrenal glands need time to wake up from prednisone suppression. There are some tapering schedules on the Prednisone Pharmacist website.
Retired nurse-anesthetist US here.
Thank you, Karen! It's been 10 days since I went from 5 to 4 mg. I now realize that it might have been too fast, but I only have 1 mg tablets -- so, should have alternated 4 and 5 instead of dropping to 4 in one step. I might be getting OK-ish sleepiness-wise, but still chest-tighter than on 5 mg. Stupidly, I ran 30K in 4 days (thought I was over the hill); that might have been pushing it.
I use a pill cutter to cut the 1mg tabs/ to cut the 1/2a into 1/4 at the lowest doses.
I used a razor blade, did not work well 
The last bit is the worst. Take it very slowly but you do get there. I know steroids are necessary sometimes but the side effects are long lasting so it is worth getting off them.
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