hey, I have Takayasu’s and 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 taken 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 😊
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KRBcat
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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.
Hi, I agree you need to see someone. Do you have an emergency steroid injection at home? I have one prescribed for situations where you cannot keep down the tablets. I’ve never used it, but I would ask your doctor for one to keep in the cupboard.
I would also phone your GP first thing and then then to review you urgently.
It does sound like a crisis. I only found out when I had an appointment with GP as I was feeling awful . She had an idea, did a blood test and the same day told me I was adrenal insufficient.
I have EGPA and have been on prednisone for over 6 years. Due to this my adrenal glands no longer work. This means that I will be on prednisone for the rest of my life. My endocrinologist impresses on me how important my need for prednisone is every day. However, last year I started to feel a bit flat. On checking my blister pack of meds I realised that the pharmacist had not included any prednisone. I had missed it for about 10 days so just doubled my dose for the next week and felt fine. What I’m trying to say is that I don’t think your illness was caused by going down from 7mg to 6mg for one day but you should speak with someone about your symptoms. Harry
Hi, Harry, sorry to hear about your Pred journey. It’s defo not an easy one! Going to stay safe at 15mg until I get some sort of answer (hopefully) from my Rhuemy, thank you for your reply ☺️
Hi there. I’m sorry I can’t really answer your question as I’ve never had that experience but just wanted to say how scary that must have been for you.
I’ve been on pred for 13 years, my dose has been up and down and at one time I got right down to 2mg, I was due to see an endocrinologist as I felt I was adrenal insufficient but by the time my appointment came round my dose was back up and they couldn’t test me. So I have no idea, I’m sure I am adrenal insufficienct though and have always tapered much slower than I’ve been advised otherwise it just makes me ill and I end up having to have the dose upped again.
Not a great time for it to happen when it’s hard to speak to your specialist but I hope you get some good advice soon.
When I was first ill, my daughter was really young and I was on my own with her too. It’s very hard balancing it all and shielding them from it all I know, so you have my thoughts.
I hope you stay feeling ok until you can speak to someone and can relax and enjoy Christmas
Hi KRBcat, I had an Adrenal Crisis this time last year caused by emotional stress and the symptoms were just as you described but I didn’t know what it was. Fortunately about 10 days after the Crisis I had routine bloods and shortly after was contacted by the Renal Department to attend ASAP, I attended and was asked about what had caused the stress and they bloods again and fortunately the Cortisol levels had started to recover so I was out of danger. It was a bit of a shock to know how dangerous it had been. I had stopped Pred 18 months earlier but was told I was adrenal deficient and I needed to take whatever steps within my power to protect myself from stress. You really need to get it seen to, self medication may bring temporary relief but can be dangerous long term.Nick.
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Newly diagnosed GPA without renal involvement. Sorry it’s long. 
Ongoing fatigue post chest infection 
Anyone experienced a dizziness episode?
Trying another tiny steroid drop soon
Just diagnosed with GPA and trying to keep positive 
