Hi all,has anybody suffered with adrenal insufficiency after reducing their prednisolone.I have been on pred for 14 years with my base dose being around 30mg,I am currently on biologics(Tezepelumab) and am due my 4th dose in 2days,I have reduced pred from 30mg to 10mg in the 12 weeks I have been on biologics,the lowest I’ve been on.
For about the last 3 weeks,I have been suffering with severe fatigue and muscle and joint pain and occasional dizziness and nausea,i will discuss this with my consultant when I have my next biologics but was wondering if anyone had suffered with these symptoms and was it A I.
Thanks Mark
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hainsy52
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yes , I have secondary adrenal insufficiency after long term pred use .. I am now managed on hydrocortisone instead of pred .. it’s more similar to the cortisol what the adrenal glands produce ..
So it’s life long steroids for me ..
you will need to have a baseline cortisol taken initially, but I doubt they’ll do that until your down too 5mg of pred , if that is low then it will an sst test and then a diagnosis..
Yes my asthma team checked my cortisol levels a year ago because I was having similar symptoms to you but attributing them all to long covid. My levels were low and I failed the sst when they did that so have been on replacement steroids since then. Had it checked again recently and was even lower so waiting to see endo again. They will only check levels if you have been on dose of 5mg pred for 4 weeks, otherwise test doesn’t work. I feel like I’m dying on 5mg and generally survive on 7/8 but have weened down to do the test again. Apparently 5mg is the clinical replacement dose but I’ve read so much stuff in last year and everyone is different! Good luck AI is the most complicated condition I have come across! Take care.
Yes I have secondary AI due to Prednisolone use - I would say don't taper off anymore until you've seen an endocrinologist or at least discussed it with your GP. Your GP can do a 9am cortisol test - this is when you have a cortisol blood test which has to be done between 8 and 9am before you take any Pred, otherwise it'll influence the result. This can be done in the meantime of waiting to see an endo. 8-9 am is usually when your cortisol is at its height, so a low reading will show AI. You will also need a short synatchen test but GPs can't order these, it's a hospital test, so either your respiratory team or an endocrinologist will do this.
Going from 30mg to 10mg in 12 weeks is quite fast, which may also explain your symptoms. It has taken me two months just to taper from 5mg a day to 3mg. Most people with secondary AI do recover, it just takes time.
The Pituarty Foundation have a nurse helpline who will give more advice, I've spoken to them a few times and they are really helpful: pituitary.org.uk/helplines/ I wouldn't wait til your next appointment, so either try and see your GP this week or contact your respiratory team, however not all respiratory teams are up to speed with AI.
I agree with ccccc and that it is a very fast reduction. It’s taken me six months to go from 5mg to 3mg and I have really bad side effects for the first ten days each time I make a reduction.
thanks,they do seem to like reducing preds quickly,last year they admitted me to hospital for 2 weeks for steroid weaning,I went from 25mg to 10mg and wasn’t on any biologics, I was only out of hospital for about 6 days before I had to increase pred back up to 40mg and it took about 2 months to start feeling better again
I did have it, but my adrenals recovered (helped that I found out pred doesn't really do much for my asthma so wasn't taking it, plus going freelance stopped me having admissions). I'm still on high dose inhaled steroids though. Most people with AI from other causes do not recover from either primary (adrenal gland itself not working) or secondary (pituitary not sending message to adrenals to produce cortisol which is usually the issue with steroid-induced AI) - so you may see a lot of things saying that you can't recover. However, recovery from steroid-induced AI can be possible, especially if the biologic is helping you reduce and hopefully come off pred for asthma.
I agree with ccccc to call the helpline as they are helpful. When is your next bio appointment, and can you contact your hospital team before then? I would ask for a referral to endocrinology - some respiratory teams think they can handle it themselves, but in mine and friends' experiences, they don't understand AI well enough for that.
Thank you and everyone for their views and advice,it’s made me more aware of what needs to be done and what to ask my consultant.I did see my GP but they had bloods done and said my folate was low so told me to take folic acid.I am at Brompton hospital tomorrow for my next biologic so will speak to them, I do have an appointment with endocrine in 3 weeks but for a different problem so will bring it to their attention.
Agree with what everyone has said. Make sure you tell them at your appointment tomorrow and don't taper down anymore without specific advice from respiratory or endocrinology that know your symptoms. It's a whole rollercoaster with these meds and side affects how your feeling better soon and biologics continue working for you.
I have been on and off Prednisilone for almost 50 years due to asthma. I have been classed as 'Brittle Asthmatic' and I have been diagnosed with esonophillic asthma for the past 10+ year. After many years of 5-6 admissions per year I was put on the biologicals (Omalizumab - Xolair) in 2013, it worked well for me for a couple of years by helping reduce some of my meds and not having to have 4x nebs per day. Then after a bout of pneumonia things started going backwards and I was having more admissions and more steroids.
In 2017 I was swapped over to Mepolizumab (Nucala) Since I started this I had not missed a day off of work due to asthma, no admissions, no steroids, no nebulizers, only antibiotics for any chest infections until late September last year , I had a bad chest infection days after having my flu jab, my GP gave me antibiotics and steroids (5 days of 40mg Pred,) as my PF was down to 340 (my norm is 470-520) and after 7 days there was no improvement so I tool myself to A&E and was kept in for 2 nights, I was given IV magnesium, oxygen and about 10 nebs and another course of steroids (5 days of 40mg Pred,) I had a follow up at the athma clinic in November and was told they would discuss swapping me over to another of the new biologicals at my next appointment in May.
In April 2019 I had 2x bouts of Diverticulitis and during a follow up scan they found I had an adenoma on one of my adrenal glands. This was diagnosed as 'HyperAldosteroneism (Conn's Syndrome) which was the reason for my high blood pressure
Nobody has confirmed whether or not this was due to the amount of steroids I had been taking. I then had a Saline Supression Test a few days after which I had a heart attack, This put further testings on hold. Once tests started again I had an AVS to determine whether it was my left or right adrenal gland that was faulty. Once theresults came through they said the surgery team will contact me and book me in for an adrenalectomy. Then Covid hit and put everything on hold again. I finally had my operation in June 2022 after which I was on cortisol tablets until I had a short synatchen test which proved I was still making enough cortisol of my own. Things seemed to settle down until I had asthma problemsin September;
Then I had a bad cold before Xmas and tested +ve for covid. I was bad with asthma again mid January, although I went to A&E I was not kept in but was given a 2nd course of Pred. Then I had a repeat at the beginning of February. At the of April I had another chest infection which agin my GP gave me antibiotics and Pred after 4 days my PF dropped to 300 even after 3x nebs at home, so I called an ambulance and was taken into hospital and was in for 9 days. Again I had IV magnesium, more nebs and oxygen and a 2nd course of pred (tjis time after 5 days at 40mg I was weaned down. They also found I had Parainfluenza Virus so I was kept in isolation. This left me with pneumonia I've now finished the pred and antibiotics my PF is back up to 450/480. I'm planning to go back to work tomorrow, then I'm at the asthma clinic on 15th to hopefully swap to a new biological and hope things settle down again
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