Hello everyone, this nightmare journey just seems to be never ending and I am so in need of some advice....... 8 days ago I took my last 1mg of Prednisone after being on it for 12 months starting at 65mg plus weekly Actemra injections. It seems that I have done well being able to get off Pred after just a year but it has not been without its very debilitating horrors, full on psychosis, 75% hair loss, 12 months loss of appetite and more !!!
Now I am finding that I keep getting bouts of unexplained horrible Nausea....no vomiting yet, dizziness, spaced out feeling and legs that refuse to move and feel as though they belong to a baby and not a 71 year old. These sessions happen randomly and last for 2-3 hours, at least once every day if not more. I have had the cortisol and ACTH blood test....waiting for rheumo to inform me if they are OK. Is there anyone out there who has experienced these same very debilitating sessions and if so did you find anything that helped cope with them? I must also say that when I am in these 'states' my mind gets very depressed and I start to have bad thoughts....this is not me ! So my mind and body are both being affected.
Thankyou for reading, fingers crossed someone can help me. x
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I had similar problems caused by my sleeping adrenals. I just stayed in 5mg until it improved. You may need only 1mg as you got there with no problem. I should wait for your cortisol test results, in case it is nothing to do with your adrenal glands!
Thanks Piglette..I got my blood results and they seem ok.. Cortisol 290 our ref here in Oz is: 138-650 so on the low side of normal but OKish. ACTH is 7.3 My rheumo said both are OK. My GP thinks it could be low blood sugar so we are going down that road for a few days and see if that may be the reason.
Being in the normal range is one thing - but it is whether the whole of the rest of the feedback set-up is functioning if you are subjected to the slightest bit of stress of any sort. An artificial metaphorical kick of the adrenal glands is not entirely representative of reality. And as I said somewhere else - adrenal insufficiency can lead to hypoglycaemia.
I can’t say your exact cause but just dropping from 1mg to zero would have done that to me! Please go to the right of this page and look in the FAQ’s under A for adrenals and all may become clear. Just because the Actemra is quelling your inflammation it doesn’t help your adrenal glands to work properly after being suppressed by the Pred at higher doses. This takes time and only time, nothing else. A good ACTH result will be a great start but it only tells you if your glands are capable of working if they are given the right stimulus. What it doesn’t tell you is if all the feedback parts and the role of the brain are working properly to provide that stimulus reliably. If they aren’t, the glands are not sent the ACTH and will sit there waiting for the memo while you feel dreadful. Or the whole system is ok until a bigger demand is made like, sweeping the yard, an extra hot day, upset, a busy day out and it can’t cope so you go into adrenal insufficiency. It took me a good 18 months after stopping Pred to be reasonably certain I wouldn’t hit the skids and I took a year to get from 1mg to zero. That last bit is perhaps a bit extreme but the point is that many people take almost as long to go from 5mg to zero as they did on the rest of the dose ladder.
Have you tried giving yourself say 2mg and seeing how you feel?
Thanks SnazzyD for your experiences. I just got my blood results Cortisol is 290 (138-650) and ACTH is 7.3 (<12.1). My doc feels this is ok and has suggested my symptoms could be low blood sugar ? so we are going down that track for a few days and see if I improve. Watch this space...😁
my cortisol was in the 200’s when I first had it tested. The Endocrinologist didn’t see that as a home run and recommended a repeat test when I got to 1.5mg (from 4mg) and a diary of symptoms. Low blood sugar can be a sign of poor adrenal function and I remember one person on this forum had a terrible time with their blood glucose and low adrenal function. If I were you and funds allow, I’d buy a blood glucose meter from the pharmacy and check your sugars when you feel off and ok. The meters aren’t too expensive but the testing strips are more but you get a few free with the machine. You need to follow the instructions to the letter, especially washing your hands first and not squeezing the digit you’re pricking for the blood.
Also, I’d make a diary of when you eat and what you eat relative to the alleged hypoglycaemia attacks and times the episodes occur. Does eating make it better and if so, how quickly?
Thanks SnazzyD I have just bought one and will start monitoring. I felt fine all morning then just had lunch (very healthy one oatmeal fruit yoghurt etc) and I am just starting to feel wierd again. I tested before lunch and it said 5.2. I will test again in an hour or so. The attachment is very interesting and also rather scary. Thanks for all your advice. x
Oatmeal, fruit and yoghurt may be healthy - but it is also fairly carby and enough to set off the roller coaster of BS levels. Have you tried adding more protein to such a meal?
It's strange but the thought of eating protein is something that adds to the nausea...I swear that in the 12 months I have been on Prednisone it has changed soooo much about my enjoyment of food and eating. I can no longer stomach lamb and beef avocados sweetcorn mushrooms to name a few...I used to love these foods. A bit of positive news is that the last 36 hrs has been nausea free and I am now thinking it could have been caused by the drug Metformin. I was on a low dose because I became pre diabetic about 5 months ago. My doc said to stop it and see if that helped...whilst checking blood sugars which so far are in the low range. A few more days will be the test I guess but no nausea is wonderful...like winning the lottery 🤗
It is all very well using Actemra to get off pred quickly - but a few months at high doses of pred will have suppressed adrenal function and that has to recover. It doesn't do that overnight, Actemra does nothing to replace inadequate adrenal function - only time does that. 2mg, even 1mg pred can be plenty to allow you to function on a daily basis. What you describe has all the hallmarks of adrenal insufficiency.
Thanks PMRpro for your advice and info. My bloods have come back pretty reasonable so she suggested it could be low blood sugar causing these 'episodes' so we are going down that path now. I will let you know how it goes, fingers crossed it's just mild low blood sugar plus mild Adrenal Insufficiency causing the problem. Thanks again for helping me out on this one.
Even before GCA I was borderline Diabetic. Never so bad that I needed meds for it but doc was always in tune with it. Since GCA nothing seems to have changed re my bloods for diabetes, still borderline. I must admit this blood sugar thing, hypoglycemia etc etc is something my brain refuses to understand ? And along with real brain fog from Pred and Actemra I'm not about to improve on that level, so any assistance is greatly appreciated.....😇
If you are borderline diabetic, then I find suggestions of hypoglycaemia a bit weird without a cause. And adrenal insufficiency would be a potential cause.
When you are on pred, the pred triggers the liver to release random spikes of glucose into the blood from the body stores - that, in turn, trigger production of insulin in expectation of a meal on its way. There isn't food to use it up and the blood sugar level plunges to too low a level and you crave carbs to bring it back up. Eating carbs adds to the effect. That is one possible explanation. You can smooth it out a bit by cutting the dietary carbs and we encourage that - it also reduces the risk of developing steroid-induced diabetes.
At the start of Actemra I found I was hungry and I thought I was gaining weight - don't think I was really but I haven't lost despite being at a much lower level of pred than I was. But pred never was a massive problem for me in that way.
I am struggling too in ways like you. Blurred vision, legs very weak, sometimes not moving. Worst of all balance.....I am either using a sti ck around the house, or gripping onto anything to keep upright!.....this brings a horrible sadness over me.....I have been on 5 mg for several months and will not attempt to lower till next year My ACHT test was mid range, but who knows what's going on with them. Wish I had the answers for us.......
So sorry you are going through similar horrors, it really is no fun eh? My doc has just suggested my symptoms sound very similar to low blood sugar - any chance that could be contributing to your symptoms? I hadn't thought of it until she suggested it. Maybe worth an investigation - just in case, you never know.
Thank you, I have had lots of blood tests recently so no t low blood sugar. Get y ours tested...hope it's ok. It helps a great deal to have answers....
I'm down to 1.5mg after PMR diagnosed August 2022 and was kickstarted at 50mg. At every Pred reduction I've had a fatigue reaction but never a pain flare. The latest reduction to 1.5 mg 10 days ago is causing crushing fatigue even after a nights sleep with my new CPAP machine. My GP is very supportive & very thorough. He's "PMR aware"! My next appointment is 23rd Dec. I have blood results and a Carotid Artery scan to dicuss. My problem is that I seem to be suffering more after this latest Pred drop than I normally do. I usually recover faster than this and move on to the next drop after a few weeks. But I'm starting to think this, at 1.5 is my "adrenal sufficiency" limit OR it's something else wrong? Should I, dare I, go back up to 3mg (e,g) where I felt reasonably OK? I'd hate to go back up but I can't live like this. This is death but still upright! Thanks for all the help you've given to all of us.
If only diagnosed in August this year (although looking at previous post think you mean 2021)..and despite high start (why that high?) your PMR is still active..so a return to 3mg is probably very wise...and why 'hate' to go back up if it gives relief.
Would say its a combination of adrenals stuttering and too low a dose for your PMR.. the latter you can remedy very easily, the former takes longer...a slow taper and patience.
Yes I realised that having look a t previous post...but it's still very quick to be down to 1.5mg - unfortunately PMR doesn't read the "optimistic" papers that say ..."PMR only lasts 2 years..."🙄
So if you need more Pre, you need more Pred.. or as you say you endure - I can't live like this. This is death but still upright!
Your choice.. no-one else, but I sure as heck know what I'd do.
Often called "deathly fatigue"! I can only repeat the mantra "the lower the slower". Adrenal function doesn't just flick a switch and all is well, First of all I'd go back to a functional level for xmas and the NY and then creep down very slowly from there. You are low enough to prod the adrenals into life but they need to have a chance to catch up. Even if it is 2021 you mean - 16 months is very fast to get down to this level. Do you use one of the slowed tapers? If you don't - consider starting on one and even repeat stages several times to slow it further. It isn't slow if it works and you can continue to live while getting lower.
I was on pred and inhaled steroids for ten years before my diagnosis of steroid induced adrenal insufficiency in 2020. Not a single doctor (not my immunologist, my endocrinologist, or PP) identified the source of my malaise - headaches, nausea, dizziness, diarrhea, fatigue, muscle weakness, insomnia - even after my am cortisol test came back as less than zero. I ended up in the ER, twice, for deathly low blood pressure (low blood pressure and hypoglycemia are two significant indicators). I was tested for everything under the sun while in the ER, because my endocrinologist refused to believe that inhaled steroids could cause adrenal insufficiency.
Medical knowledge of the endocrine system is in its infancy, and in my experience, relying on a doctor’s instruction can be deadly. You literally can die if you experience an adrenal crash. Your symptoms certainly indicate an adrenal issue. I joined a Facebook site specifically for tapering down from steroid induced adrenal insufficiency, and it was a life saver. I reached zero hydrocortisone about 14 months after my diagnosis, but frankly I am still steroid dependent - every time I get tired I have symptoms of adrenal insufficiency, terrible fatigue, hypoglycemia, diarrhea, loss of appetite. My specific weird symptom, in conjunction with the classic signs, is a sore throat, congestion, and asthma. I updose with 5-10mg of HC for a few days and the symptoms dissipate. It’s incredibly discouraging, and incredibly important to listen to your body (everyone is different) as well as working with an endocrinologist who is knowledgeable. Most endos specialize in diabetes these days and have zero expertise in adrenal insufficiency.
Tell me about it. I have a new endo now, who seems to be qualified in this area. I also have hypothyroidism, which can complicate the situation. Honestly, these days my health is a full time job to manage. Health Unlocked has been a great resource, I’m grateful to everyone who contributes. I’ve learned so much!
PS - FYI steroids will affect your blood glucose levels, and your doctor should know this. My blood glucose levels came down from pre-diabetic to high normal once I tapered off. Unfortunately now my immunologist has me back on an inhaled steroid for my APBA asthma. It’s a rollercoaster managing my health, frankly.
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