I’m trying to get from 6 mg to 5.5mg. It has taken over a month and this is the first week of entirely 5.5mgs. I have had a bit of difficulty - fatigue slight stiffness but I have been working in the garden so…..?
Yesterday I took time out to watch films, read books and just be lazy.
Suddenly I was alerted to a crisis by my older dog barking an alert. The puppy had got the wrong side of an automatic boarded front gate and I could hear traffic! I knew I had to run fast to another gate and it felt as if my legs wouldn’t work. I somehow got there and saw a stopped car with two blokes kneeling on the ground by the puppy. I thought the worst and struggled to get the gate open. It turned out she was alright but very nearly had been run over. I can’t really remember much about thanking the guys but I think I did. I got her inside and then jelly legs pounding heart nausea I think. Then tremendous anger. It was like one of those dreams where you can’t move for fear but this actually happened.
I’m ok to day and I was wondering what happens to adrenals in such circumstances? In the past I’ve been quick in a crisis and have usually remained coldly alert. This time it was awful.
Is this normal? Do you think there could be a silver lining to this cloud and my adrenals have been given a boost? I think I can stay at 5.5mg ?
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what a horrible shock, I am glad your pup was alright! I think this is a perfect example of your Adrenal system being unable to respond as you wish. I have had less extreme examples. So they are working but not fully, as one would expect at your stage of tapering, which is notoriously tricky.. I don’t think shocks help, I expect you felt knocked about for a while. I would aim for a restful few days and a well secured puppy.
Yes - what a shock…and adrenals working somewhat - but not fully….so actually I’d be inclined to stay/return to 6mg - and be on the watch for a flare [delayed reaction]. You may feel okay today, but as we all know, such things can cause a flare - so just be aware. Let everything settle before you think about resuming your taper.
Well I’m in a consistent 5.5mg. I am better on 6 but I know one must just persevere the discomfort. I wouldn’t think of going to 5 until I seem to be fine. Before I joined you all I did that - taper regardless. That was a big mistake but it led me to you and a greater understanding. No doctor told me about adrenals.
Yes, I’ve had that with sudden stressors when my adrenal function was low or inconsistent. If they can’t produce the cortisol to cover the emergency you feel terrible. When they start to work better and enough cortisol is supplied you cope better. I found it was more of an issue when they were inconsistent because one can become complacent and then bam you’re down. I never go out without Pred in my bag.
So you would take 1mg pred in those circumstances? It was over in about 10mins at the most but I did feel weird for ages. Do you think such an incident would get the adrenals going?
First of all, I’m sorry you had such a shock and I’m glad your young dog is okay x
I’m not an expert, but my understanding is that if your adrenals are not fully functioning, a shock won’t make them swing into action. In fact your body will try to do what you want, but will struggle, and you won’t feel good (as you know only too well!). So, no harm done, but your adrenals seem to have shown themselves to be not fully functioning yet.
I’d say to take it easy for a few days, stay on 5.5mg if you feel confident, but at the first sign of a flare, up your dose as DorsetLady suggests.
Hope you can relax and that you soon feel better 😊 All the best xx
PS Like Snazzy, I never leave the house without a strip of pred, just in case of emergency. If your dog had been hurt and you’d had to go to the vets etc, ie if the crisis had lasted longer, you would have been well advised to take an extra dose of anything up to 5mg, just until you’d got through the upheaval x
I have been so fortunate to not have had a crisis yet since I began my PMR journey. I had never thought of carrying some prednisone with me just in case of an emergency. I gather from what I have read here that this is a good idea. Right? I am on 5 mg now. What would I need to take in such a situation? And for just the one time?
I’m not sure there’s a specific answer to this as it will all come down to personal circumstances. So I can only tell you what I do/ would do if needed…
I have just got down to 7.5mg and I carry a strip of 5mg tablets in my bag. Like you I haven’t experienced a real emergency (🤞) but if I did, I’d probably take an extra 5mg as a precaution. Or, in a lesser case of simply feeling unwell, I’d break the tablet in half and take 2.5. The further benefit of carrying the strip is that I don’t need to worry about being delayed somewhere for hours eg recently had to take my daughter to A&E, and knew that if we were there overnight, I still had my dose for the morning.
That’s what I do, or rather plan to do, in an emergency. Your dose might be less. Perhaps a strip of 2.5mg would do it?
I do also carry my steroid emergency card, which tells any medics that I’m on pred, although I have to say it seems so unsubstantial, I wonder whether anyone would notice it. I guess paramedics are trained to look!
thank you so much Nextoneplease please! I truly appreciate your advice! I will keep a 5 mg with me at all times! I am truly grateful for you and everyone in this group. I just today received in the mail my medical Alert bracelet which states PMR, long term prednisone user, my name, birthdate, and two ICE phone numbers. I will always wear it. I thought of getting one of these only after having read of the importance of having this info on my person. Do you have these bracelets in the UK? ( I’m in the US).
Yes, we do have these bracelets. I will reconsider getting one although I have to say I don’t really like wearing much jewellery- big beads and drop earrings are more my thing…..still, if needs must ! Well done and good luck to you x
I’m not sure anyone can say if the shock gave them a jump start but the fact that you felt awful means they didn’t work very well in the event. As to future functioning as a result of that event who knows? I also found it varied with my general health, weather stresses (wind, hot, v cold) as to how much I had left in the tank when my body was already dealing with other things. It just slowly got better.
Depending on the issue it could feel bad for a few hours or a couple of days. Again, unpredictable. Sometimes would just lie down for the day and not take extra Pred. Other times, I’d take 1mg or 2mg and still lie down. I don’t know, but I got a feel for it. As to whether I over-reacted I’ll never know.
I carry extra Pred too. I was also issued an emergency injection pack of hydrocortisone by my endocrinologist. It would be nice to think it worked like jump starting a stopped heart but alas, it doesn’t. Take heart from having some function though.
It came with an instruction booklet. I made sure that my husband was familiar with the procedure, incase I lost consciousness. It was sent by the Endocrinologist who did my Synacthen test that showed an under function initially. I haven’t looked at it for months, it may even be out of date. I am seeing the endocrinologist within the next couple of weeks. Perhaps you should seek a referral. My initial cortisol tests seemed to get me on to his list.
Perhaps I should. Next week I am seeing the GP (new and helpful) and see what he says. I upped to 6mgs this morning and already feeling better. But then Prednisilone would support ai and flare equally as far as I can see 🤷♂️
It is a dilemma. We seem to have to go through an Adrenaline wobble in order to get off Pred eventually. It’s hard to tell whether a flare is building or not. There is good information on FAQs that might help clarify things. I am in the same boat and quite confused. When I was at these low levels previously for PMR alone, it seemed more straight forward.
Without wanting to over complicate matters, our ability to react to an emergency situation is not only driven by cortisol but it is controlled by the whole HPA axis which is 'shut down' by our need to take Prednisolone. I think a basic understanding of the HPA axis is important because it explains why we have so many problems when reducing our Pred dose and needing our bodies to readjust. For example:
Hypothalamus: controls every bodily function by sending messages to other glands and organs. It maintains Homeostasis which means a healthy and balanced state. It interacts closely with the Pituitary and controls heart rate, body temperature, hunger, and the sleep-wake cycle.
Pituitary: Stores hormones produced by the hypothalamus in addition to controlling thyroid function, reproductive organs, water regulation and the Adrenal glands.
Adrenals: Have two parts the cortex and the medulla. The hormones produced include adrenaline, cortisol and aldosterone and control blood pressure, salt and sugar balance, urine output and metabolism and our ability to react in an emergency. The ability of the medulla to release adrenaline in an emergency is triggered by release of cortisol which comes from the cortex.
So, as we wean ourselves off of Pred you can see why we can experience many effects as the whole orchestra of our hormonal systems learns to play the same tune. It is possible that we might develop sleep issues, fluctuating blood pressure, produce more watery urine, become hungry or lose our appetite etc. It just takes time for everything to work normally again and you cannot rush it. Unfortunately if our Pred dose slips too low then we are at risk from the effects of what we call Secondary Adrenal Insufficiency and if it extends into Adrenal Crisis that is a medical emergency, but every time we increase our Pred dose we are just delaying things. Negotiating this is very difficult and I think does require some understanding of what is going on. No two people will be the same and it takes far longer than I would ever have imagined. IMHO I don't think Drs have much of a clue what it's like and how hard it is.
Thanks for this explanation. Fascinating and a tricky balance when tapering. I find I have been so sensitive and aware of every change in my body with GCA it’s sometimes difficult to understand what is going on. I try not to panic with every odd twinge and bout of fatigue. I take the fatigue as a signal to rest up and do some deep breathing exercises. I’m fortunate in that I’m retired so able to really follow my body’s needs. It eventually passes after a day or so. It’s the unpredictability that’s hard. Tapering for me has generally been going well so far with just one blip from 20/17.5mg. I have been on 9 mg for just over a fortnight now.
Thanks, this is very helpful. I was led to believe that "butterflies in the tummy" is caused by adrenaline; when you get that feeling of sudden panic because e.g. you realise you left the bath running and a wave rushes through you and your heart starts pounding. Is this true? If so, it seems I am producing adrenaline just fine now, as I am getting this feeling again! Will this mean I'm also producing cortisol then?
The butterflies feeling is caused by blood flow being diverted away from the stomach and intestines to the major muscle groups, in times of stress . The amount of stress hormones (adrenaline and cortisol) you are producing will depend on how much Pred you are now taking and how active or unsuppressed your HPA axis is, including the adrenal cortex and the medulla. Unfortunately I'm not able to answer your specific question because the endocrine system is very complex and beyond my knowledge base. But if you get a sudden surge of energy and can leap up the stairs with no effort at all, then yes I would say that you are on the right track.
Thank you. You sound considerably knowledgeable - certainly more than me! I do understand that everyone is different. Yes the surge of energy did not happen! The opposite I had trouble moving. This is so different to past crises. And it was this that completely flummoxed me. It just goes to show we are all a package of chemicals!
I have to say, that is how I feel all the time lately. My body doesn't respond to what my brain says to do. I feel weak and unable to jump into action--so unlike my past self. This is such a grinding, long road of confusing feelings both physical and mental. I'm so grateful for this support group. I don't think I could have coped without all of you.
Normally your adrenals would have produced a surge of cortisol to help with dealing with the emergency - they couldn't rise to the occasion. But no, it isn't really like using a defibrillator to shock a heart into functioning properly unfortunately! It is a very complex feedback system that has to settle down and get its act together.
Patience - if you don't learn anything else with PMR you will learn that!! At this stage it is complex - you have to balance the needs of the PMR and the adrenal recovery.
5 mg is a somewhat normal dose for people with adrenal insufficiency. So when something happens that causes them to go into a crisis the first thing to do is to double their dose. Assuming they can keep the dose down they should continue to double dose for the next 2 days. I know this because I now have adrenaline sufficiency from my long-term prednisone use. I've had two crises in two years and it was the second one that was the worst. Fortunately I was able to keep the pills down so did not have to use my emergency injection. I would say that if something like this happened again double your dose for a couple of days. Of course I'm not a doctor and you should check that with your doctor first. One of the classic symptoms of a crisis is nausea.
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