Steroid weaning.

[Johnem]

Hi all,

Saw my Nurse specialist today and when she saw that I had needed to use my rescue pack 6 times since last June she thought that without having been weaned off it, the prednisolone could be the cause of my ongoing exacerbations due to it suppressing my adrenal glands from naturally producing their own. I have just finished the 7th rescue pack.

She now has put me on a weaning process of 6x5mg tablets reducing by 1x 5mg tablet every 4 days, down to 1 tablet...then start over again twice more. I'm certain that many of you know the reason, but for any who don't here is the reason.

Prednisone is similar to cortisol, a hormone naturally made by your adrenal glands. If you take prednisone for more than a few weeks, your adrenal glands decrease cortisol production. A gradual reduction in prednisone dosage gives your adrenal glands time to resume their normal function.

I would be interested if anyone has had to do similar and if it helped.

Best regards and wishes to all.

John.

[Hidden]

No you are lucky..hope it works I have adrenal glands insufficiency because they got lazy so now I am on daily pred but I didn’t have much oral pred before I had a lot of inhaled steroids, still my cortisol got low and my glands lazy..

[Johnem in reply to Hidden]

Thanks, hope I am lucky, I certainly had no knowledge of this problem even though my Doctors, (never the same one twice, mostly locums) have known how many I have taken.

[Hidden in reply to Johnem]

Did you need them? If so there is no point in looking back..

It is not dramatic, I had to do a cortisol blood test and the synacthen injection then they retest your cortisol. In fact I feel better using pred anyway. I was a wreck. It is a low daily dosage, I am on 7.5mg but I must increase when sick according to my action plan or go down to 5 mg if I can.

I only started in September, with 20mg a day I had to get better first. The specialist has assured me that if I keep under 10mg I won’t have long term side effects. At 5mg they call it a physiological dose.

Hope you feel reassured 😊

[Johnem in reply to Hidden]

Thanks again HL,

Yes I needed them, after a couple of days without them, my SOB just couldn't cope with the big reduction in air intake and I was panting badly doing the slightest thing and trying to cope by using PBL wasn't easy and only lasted until I moved again. I had a mucus test for infection and a blood test for cause by heart failure and both were negative, now waiting on X-Ray results for possible? lesion.

[Hidden in reply to Johnem]

Sorry about the hard times..negative is good..ask for a CT scan, xrays are not very conclusive..

As far as meds are concerned if the side effects outweigh the benefits then you can reconsider..

Keep us updated..

Wishing you well x

[Johnem in reply to Hidden]

Thanks for that, I appreciate the best wishes. I'll certainly let you know how things turn out. It might be a while though as the weaning process takes approx 9 weeks.

[Hidden in reply to Johnem]

Yes the slower the better you have a good nurse there..we’ll be still here 😉

[PollyP]

Flippin steroids- they are a necessary evil at times aren't they ?

Last year I got very physiologically dependent on then and it took me weeks/ months to get off them...

So down to 20mg no problem then tapered down 1 mg a week and bingo the job was done- I was off them.

Am very careful now when I have to take a short course 7 days at the most and then short taper off...just work through those horrible feelings of reducing.

Good luck

Pp

[Johnem in reply to PollyP]

Thanks for your reply, appreciated.

I have been told by my nurse specialist that when having to use steroids for a flare up, 40mg per day for 5 days is as good, if not better, than 30mg over 7/10 days and will not require tapering off at all. Having googled this, it is the opinion of many respiratory professionals, so I will be doing that if I need to in the future.

[PollyP in reply to Johnem]

Mmmm, that is interesting John.

I usually do 30mg, over 5-7 days and still have to a bit of a wean !

Keep well.

Pp

[elanaoali]

I have just come across this post. Day 18 and I been weaning off prednisone since Monday from 40mg for the last 15 days til now. (My worst asthma flare up/2 asthma atttacks)and being referred to consultant. A necessarily evil but still struggling with symptoms and needed my ventolin every 4 hours. As of this morning. Keen obviously to get off this medication. Not sleeping and weigh is dropping off me. (Both symptoms not usual), Just plain wore out with it all.

I know I will get there just having a tough time.

[Johnem in reply to elanaoali]

Hi, I can emphasise with how rubbish you feel and keeping trying to get some air into the lungs can be torture. I have been told to use my nebuliser 4 times a day and ventolin as often as required, I imagine that like me, your ventolin dose doesn't work for as long as when things are normal.

Thanks for your reply, hope you are sorted soon.

[Caspiana]

Hi John.

Unfortunately, I haven't been able to go completely off Predisone. But cutting down gave me some side effects. Just to let you know you might get some. But of course not everyone has it.

I hope it gets better for you.

Cas xx 🌷

[Johnem]

Thanks Cas for the info and the kind thought.

John x

[elanaoali]

Thanks for the advice ... today back to doctors today as got another cold which is making my asthma twitch so another day of 20 mg and watch my symptoms. Using my ventolin every 4 hours 4 puffs and back to doctors if can't last. I hope and pray that I am fine...Showing today the gold standard which is Nhs care

[Johnem in reply to elanaoali]

It doesn't do any harm to use your Ventolin more often than every 4 hrs if you need it. A standard nebulised salbutamol dose is like taking 25 puffs of Ventolin.

Hope you get on top of it, if not, do follow up with your doctor. Also, see if they will put you in touch with your Community Matron who can really move things along for you.

[elanaoali]

I know that it doesn't hurt to use it more. I was aiming to use it less to see if I could in line with the reducing of steroids. I don't know what a commuity Matron is but I have full confidence in my excellent GP practise top 2/10 in my city. They are fantastic.

During my appointment this morning at the open surgery the doctor was very through going threw all my history of the last 3 wks. My new respiratory consultant (who called my a bonny lass apparently in description) no I don't that at all. He has ordered a lot of breathing test for me and done a Ige Blood test for allergies. (animals, tree spores, dust mites etc). So everything is in hand.

I just want to get better now and part of that is trusting the NHS to do me right and me to keep my sensible head on. Great support from family and my church family. Keeping a positive mind that all things work for good that love God.

Thanks for the chat from you all too. It really helps to talk to the people who have been there done that got the T shirt.