adrenal crisis?

[KRBcat]

hey, I have Takayasu’s and have posted on the Vasculitis page but I always read you folks here and know you always have some good advice regarding Pred so hope you don’t mind me sharing my story and asking a couple of questions 💗

I’ve been on several different treatments over the last 3 years. My body isn’t responding to any of them, tocolizumab, methotrexate, adalimumab, leflumenide and I’m currently on my 2nd long term dose of Prednisolone which I started on again at the beginning of 2023. I’ve gone from 60mg to 7mg this year. On Wednesday last week I went down to 6mg. I had a very emotional and upsetting Friday and only slept about 3 hours. I woke around 6am and instantly felt ill. I had the worst headache, severe vomiting, sweats, freezing, I was very ill. Almost delirious at points. After about 6 hours of in and out of sleep(?) and vomiting with crazy head pain, I took 10mg right after I was sick in the hope the time between vomiting would be long enough to get it absorbed. I had not been able to take any of my daily medications. Within an hour I started to feel like I wasn’t going to die and by later in the evening I managed something to eat. It was very scary though. I’ve left a message with my Rhuemy but could be a while before they get back to me. I’ve now had 15mg of Pred the last 2 days and I’m so scared this could happen again. I’m a single mum of a 7 year old (who thankfully wasn’t home at the time!) and would hate her to witness that…

My questions are- was this adrenal crisis? It happened so quickly, how is best to deal with this as I struggled to function? And was it brought on by the emotional stress, dropping to 6mg or both.. just some feedback about similar experiences would be great too. The next step is JAK inhibitors?

phew, that’s a lot so thank you for reading 😊

[DorsetLady PMRGCAuk volunteer]

Does sound very much like adrenals struggling - so maybe have a read of this - and the replies when you feel able to -

healthunlocked.com/pmrgcauk...

- we would say on here a very fast taper which probably didn’t help, and certainly the events of Friday wouldn’t have either.

Now you have gone up to 15mg, if it was adrenals, then it shouldn’t occur - you need to be lower - usually nearer 7 or 8mg, but sometimes as high as 10 or 11mg.

Hopefully your Rheumy will get back to you soon, and please let us know what the advice is…

[KRBcat in reply to DorsetLady]

Thank you, your responses are always helpful. I have this very post from you saved already 💗 I had no idea about adrenals until I read it. Never got told anything about them. Not once in 3 years.. so thank you. I will keep you updated x

[SnazzyD in reply to KRBcat]

Neither was I and it is so important to know. I agree with DL that to go from 60-7mg in less than a year is jolly fast. Your adrenal glands need more time to catch up from the sounds of it, even if your condition is under control. A crisis comes on very fast or it can slowly builds over days. Being informed is key to dealing with it but ideally you try to adjust life to fit your lack of capacity.

[KRBcat in reply to SnazzyD]

Thank you, it’s felt like forever on the Pred and I think they would have me coming off them faster. The issue is the condition isn’t under control either and I’ve tried so many drugs. I feel sometimes no one knows what’s going on and reading your posts over the last few years it sound like it has to be down to you which is something I’m just coming to terms with. I guess at 41, Drs always fix things and tell you what to do, now I feel they ask me what I should do??!🤦🏽‍♀️ anyways, again, thank you for all your information x

[PMRpro Ambassador]

AS you know, I replied on the Vasculitis page but I'm copying it here for completeness for anyone else reading:

"Yes, it could well have been. If it happens again, don't wait but call 999 immediately and tell them you are a long term steroid patient and at risk of an adrenal crisis which you think you have been close too before. They should send an emergency ambo on blue lights and the paramedics carry injections for use in such an event. Don't ever wait to get a doctor's appointment or to hear from your rheumy. Get the emergency services."