Further to my last post, GP went ahead with the endocrinologist plan to taper me off my daily 5mg Pred to try and get my adrenal glands working again! I started to take hydrocortisone tablets 2x10mg a day yesterday and 4mg of Pred. All through yesterday I felt much less tired and washed out and all seemed positive.
Then got to bed time and my asthma flared up quite badly! I'm wondering if cutting down to 4mg is too much too soon - does my asthma need 5mg? or 4.5mg? Would 1mg less really make that much difference? Is it a reaction to the HC tablets? Or is just a shock to my system having been on 5mg a day for two years now? I didn't actually think 5mg was doing anything for my asthma but perhaps it was. I've gone back to my usual 5mg today and no HC. Anyone else had this experience tapering off Pred?
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I haven't been in your situation re adrenals, but I strongly advise you talk with your prescribing doctor before you stop the hydrocortisone and increase the steroids. Any such changes to these meds should be done under medical supervision.
Sadly I’ve learned from bitter experience that the body becomes dependent on steroids and they are very difficult things to get off once we take them over a long period. Unfortunately we are not warned about this when we start taking them.
Hey there! Can you tell me the exact tapering plan? How much pred are you decreasing daily? How long will you be on 20 mg a day of HC? What times of day are you taking the two HC pills? It helps to split it into dosing mimicking the circadian rhythm and since cortisol is highest in the morning a lot of us with AI do a big dose at 8 or 830 am. I split my daily 20 mg dose into 10 mg at 830 5 mg at 1230 and 5 mg at 1530. HC lasts for much less time in the blood so you have to dose it differently than pred-
the plan is 10mg HC, one at 8am one at 3pm, so 20mg overall. This is in conjunction with 4mg of Pred (instead of 5mg Pred with no HC, my current regime). So:
20mg HC, 4mg Pred a day week 1,
20mg HC 3mg Pred a day week 2,
20mg HC 2mg Pred a day week 3,
20mg HC 1mg Pred a day week 4,
then stop the Pred and just carry on with the HC for three months until another synacthen test. I'm doing this as I don't think 5mg Pred is doing anything for my asthma and making me feel like rubbish, so it's currently being used just for AI (I know about sick day rules and not just stopping the Pred etc)
My energy levels felt pretty good on Sunday which was Day 1 of the week 1 regime, must be the HC doing what the Pred wasn't quite doing, but my asthma was pretty bad that night., I had to take a few puffs of Salbutamol in bed. I've been feeling better since I dropped the HC and gone back to 5mg Pred. I know the tendency of the doctor will be to blame the Pred reduction for the flare up but I've cut back on Pred myself before (just cutting small bits off the 5mg tablet to see how I'd feel) and my asthma has never flared up as badly doing that. So I can't help but think it was the HC, which is odd as I know HC is another steroid and can be used for asthma in certain situations. Just feel very frustrated as I felt like the HC was giving me more energy. The endo consultant who put me on the regime I saw privately and will cost to see him again to discuss this (GP has referred me to his NHS clinic but how long will that take...)?!
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