I have some specific questions about what to look for when you start tapering below 6.5 mg.
I've been alternating 6mg and 7 mg every other day for a few weeks now, with no symptoms of any kind (PMR or adrenal insufficiency). Hence I say I am at 6.5.
In a few more weeks I am going to try tapering 1/2 mg a month. And I have two specific questions.
1. How long does it take to know a if flare is happening and I need to go back up?
2. How long does it take to know if I went too low for my adrenals to handle and need to go back up?.
This is important for me to understand. I definitely know how to distinguish between the symptoms. But I don't know when too much is too much.
For some context . . . the last time I got down to 5 mg I ended up having severe adrenal insufficiency symptoms. I waited two weeks and it didn't get better, and so I had to go back up pretty high. During that taper, I had gone from 8 mg to 5 mg in about a month, all the while feeling perfectly fine. Then after about 3-4 days on 5 mg, the symptoms began.
What I think this means is that somewhere between 8 and 5 was my "good dose." But I don't know where, because I tapered too quickly though this period.
However, given that I have been totally fine now on 6.5 for two weeks (and assuming I remain fine for the next two weeks), I am going to assume it is a fine dose for me.
But I really want to know, once I go down to 6 mg, and then each time I drop 1/2 mg, how long does it take to know whether a flare, or adrenal insufficiency, is happening? What do I look for in order to make a decision to go back up?
Do I go back up at the first sign of PMR pain? Do I go back up at the first sign of adrenal insufficiency? I would think the answer is no for both questions, that I should wait things out a bit. But I don't know how long to wait.
I am especially concerned about adrenal insufficiency symptoms (fatigue, nausea, fever, diarrhea). The last time I waited it out two weeks, which was too long and I had to go far back up, which ended up being very bad.
I know there may be no set answer to this questions, and that the DS method is the only advice people can give (which I intend to use), but I really don't know how much AI symptoms I should tolerate (if I experience them) before making the decision to go back up. I know I need to give my adrenals the chance to upgrade themselves each time I reduce, but I am nervous about waiting too long and getting into the terrible situation I got myself in last time.
Thank you everyone for any advice you can suggest.
Emanuel (my first name... I want to start using it here because I love so many of you.)
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I can only repeat what you have been told before - they are "how long is a piece of string" questions. How much you tolerate is related to what you MUST do and how keen you are to get through this stage. Only persisting at a dose low enough to stimulate the HPA axis will encourage production of cortisol. That may mean that you have to choose to almost go into hibernation for weeks at a time until it works. If it is only 2 weeks, hardly a problem one would think but for SnazzyD it was much longer.
In the case of PMR symptoms, the warning sign would be if they start to increase as inflammation builds up.
But the human body is not a machine, it doesn't run at a specified distance/speed per litre/gallon. Biology just doesn't work like that. You must proceed at a slow pace, taper in tiny steps and be aware. No-one has a crystal ball that can give you answers to that degree of specificity. If they claim they have - they are talking rubbish. It is like life in general - you have to work it out for yourself, no-one can do it for you.
I just read the article on adrenal crisis. I have never been in a crisis according to that definition.
As for what you keep trying to tell me, I am sorry if I am not understanding. Can you please try again. I really want to understand. What about the body are you saying "rarely works like that?"
Please know I am being sincere here. I am on the autism spectrum and sometimes I need things explained in more detail in order to understand. I think I hear you saying there is no metric to know whether one should go back up when one is experiencing adrenal insufficiency symptoms. Rather, it is simply up to me. Can I tolerate them? (But obviously if I am in adrenal crisis I should get help ASAP).
Is that what you are saying? Or are you saying something else when you talk about the body "not working like that."
It is biology, biology isn't as predictable as maths of physics. It maybe isn't entirely up to you - but none of us can predict what will happen. SnazzyD has explained it too, just further down. She and I have worked in the healthcare sector for years and I honestly don't think we can explain it any differently.
Ok I think I you're both saying there's no objective metric to know when I should go back up if I am experiencing AI symptoms, because the human body is not a machine with static parts. I get that, and will just pay close attention to what I am feeling and my lifestyle.
The reason we bang on about going slowly is because that way you have some control and overview. Lose them and you end up as you did. It's like driving a car ...
This is one of those irritating diseases, which has no obvious start place or end. To add to that it tends to work differently in most of us. So, there are no definite action/timetable laid down in stone, that everyone can follow at all times, i e. after three months you need to taper by 1.0mg or in eighteen months you will be finished with it etc. A lot of what we have to do is based on "how we feel" are my shoulders aching today because I did too much yesterday or am I starting a flare because I've gone to low in my last taper, am I in Adrenal territory? The forum has plans in FAQ'S which try to cover all those possibilities, whether they be adrenal insufficiency or PMR problems, as well as the experiences of its many members for us to call on. It's not always easy and often means a large change in lifestyle and thinking which isn't always easy to get your head around. I have children on the spectrum, work with children on the spectrum and totally understand how "definites" make your world easier to understand/cope with. "Good luck and hope things start to feel easier for you.
Why do you come across as so abrupt to people? This forum is to try and help people struggling etc. it has got to the point where even I wouldn’t ask anything anymore and just always hope maybe someone else on here pops up with the same or similar query. It’s so sad!
I'm a tad bemused as to why you think I was abrupt here?
But as I have said before, if you wrote as much as I do in a day, perhaps you wouldn't be all flowery? Actually, I think for sferios taking the flowery out makes it easier for him to understand since he has mentioned being "on the spectrum" - most neurodivergent people don't do well with writing around the subject,
I know you must be exhausted from writing and answering. But, I think you are abrupt too. I don't ask anything here either here on this forum! And what does bemused mean...your response to Lenny. It is arrogant and inappropriate. I find it sad that you took serfios description of himself, on the spectrum and used neurodivergent to describe him to Lenny. I am not on the spectrum and I have exactly the same questions as Serfios. You answer to Serfios was talking around the questions with metaphors and abstracts contradicting your point.
Most people just want an answer to their question in simple terms they can understand [especially early days] ... not War and Peace - they can't get their Pred brain around too much...
..and sorry to hear you feel you cannot ask a question - that's not what the forum is about as you rightly say.
Really! I think youre in the wrong place..... PMRpro, DorsetLady and Snazzy D amongst others on this forum are the most helpful, compasionate, caring people I have come accross in my journey through this horrible disease. I've leant more from these people than I have from my doctors and all the specialist I have seen.
I hate to think where I would have been over the last two years without these very knowledgeable ladies and everyone else on this forum. In spite of my sometimes redundant questions, they never fail me, unlike my team of "healthcare professionals", which I didn't have until very recently. Some, like me, need straight to the point answers. One liners. No question is silly. At least sferios kept asking until he was able to come to a satisfactory conclusion.
DorsetLady and snazzy D have been helpful to me too. DorsetLady is very direct but always seems to have empathy. I’m sorry but Pmpro no, where is the empathy. With regards to autism, I’m sorry but that is not the way to reply.. my grandson is severely autistic and I have also done a nvq on the disability. Sometimes a bit more empathy goes a long way. I’m struggling as so are many on here but go now be afraid to ask questions is an awful feeling. These ladies do this in their free time and put so much effort into all the queries. A lot of us through steroids also suffer the mental health side effect… I’m not on here looking for arguments. I just hope that someone else now asks the questions I feel I now can’t. 😏
As I said, I’m sorry you don’t feel you can ask a question-that’s nobody’s intention I assure you.
But do please stick with us, as you say it may come up anyway from another member so you will learn from other’s posts -and it may well have been asked previously -so do look at FAQs and use the search facility.
We do know members have mental issues with their illness and the drugs as well as other medical and family problems. We are also aware sometimes the written word comes across more harshly or more abruptly than was intended or is perceived to be by the reader - and that the nuances of a F2F conversation is absent. But it’s certainly not intentional.
Feel free to ask the questions - I will refrain from writing the way I have always written for 50 years in science, not reply to you and you won't have to worry.
Have to say I don't recognise that description of anyone on this forum. I'm pretty sure that you will not find a more compassionate, helpful and understanding community anywhere else. There are so many people whose lives have been immeasurably improved by the input of many users here, none more so than by PMRpro, DL, Mrs Nails and others whose names we all know.
It's difficult to glean the emotion behind written communication like there is with face to face communication. This often leads to misinterpretations. Also, people can just be in a bad mood when they are responding, or tired. And so they can sometimes be short in their responses. It's just to be expected. I try not to take offense.
But I hear you. The phenomenon of social media and the negative impact it is having on young people has been written about extensively. When 95% of your social interactions are online (behind the wall of technology without face to face nuance), people can become over-sensitized to words. This has led to an increase in teen suicides, especially among girls.
I think it's the same here. If we we all at a conference, sitting around a big table, having these exact same discussions, it would be very different.
It's just because of the nature of the internet and anonymous written communication.
Personally, I have only been 100% appreciative of the people here who are devoting so much of their time to help me and others. I am really struggling and there's nobody else who understands what I am going through and what I need to do. Even my doctors.
I sometimes feel like I may be annoying the experts here by asking so many questions, and then pressing them with follow-up questions when I don't quite understand what they are saying. But I do it anyway, and they always reply, and I appreciate it. This is difficult stuff to understand, but I am slowly learning.
Please don't stop asking the questions, far better to ask them here than bottle everything up at home and get yourself even more worried. We will always answer however tired or grumpy we may seem.
This forum is invaluable, and totally supportive. The advice and experiences given as guidelines are priceless to me. I am currently at 7mg prednisolone, still tapering very slowly, 0.5 mg per month, extending when necessary. Being kind to yourself for me is resting in between beneficial and therapeutic exercise, whatever I can manage at the time, body dictates. Likewise with sleeping, when the need is pressing, however much the body demands. Hoping these coping actions will continue to work while I creep slowly down to 5mg and lower. I am due to see my rheumatologist in 6 months time when I should be at 4mg he said. I gather an even slower reduction may be advised at this point.
Reading this wonderful forum tells me that I'm not alone in how I feel. It offers advice on how best to cope with this crazy illness and equally it offers hope, so we always feel there is light at the end of the tunnel. Don't give up, they don't give up on us.
That is very unfair.I was diagnosed with PMR in March and the posts have been immensely helpful to me in understanding my condition. Dorsetlady,PMRpro et al spend a lot of time answering queries,with their expert knowledge,so of course we want them to be succinct and to the point!
Hi Lenny, I feel the same way. I rarely ask on this forum because of just that. PMR Pro.. was not answering in a way that the writer (serios) could understand. I understood completely because she was reporting my story too. I am grateful you had the strength to express to PMR Pro. Thank you.. I am scared just as the author is of tapering.
Thank you. I’m afraid I say what I feel. Apart from all the goings on with this condition etc my husband was diagnosed Monday with cancer.. very unexpected. My emotions are all over the place. I always appreciate the help given on this forum but just felt that it was too much and I was thinking there is a right way of coming across. You take care x
My hubby had a history of cardiac issues which were very liveable with for nearly 20 years, and then a year or so into my GCA was diagnosed with terminal liver cancer [after a few months of doctors saying it was related to his heart- with me saying no it’s not, but what would I know!] and no possibility of a operation due to existing cardiac problems.
But sounds as if your husband cancer was caught early enough and can be operated on… so looking good for a successful outcome… but it will still take its toll on him and you… and you’ll all need support, so don’t be shy is asking for it. 🌸
Thank you again and yes bless him it’s always been him looking after my health issues for the last 15 years but it’s his time now and he needs looking after. They kept saying his was down to being diabetic but I knew it wasn’t. Fingers crossed, ct scan done today and op on 31st so they are moving quickly. Bless you for your kindness. X
So sorry to hear about your husband - big virtual hugs, been there, done that twice and it is awful. Make sure to get support for you too - the whole family is the patient and sometimes that gets forgotten.
I fail to see what you are implying, I’m not religious but imho PMRpro has the patience of Job. Since the fall of 2019 I’ve been amazed at the breath of her, and others’ knowledge on PMR/GCA related issues from different perspectives. I read questions posted and within minutes to an hour she responds and everytime when I’d go and delve into the literature she has hit the nail on the head. How many times has she repeated herself only to have the same question asked later, or after providing advice someone ignores it, does their own thing and when it goes haywire, they ask for help, and she jumps right in and tries to get the reoriented. I’ve read, what I consider helter-skelter approaches and think to myself, PMRpro, they ignored you let them figure it out. But she still bangs her head against the wall and doesn’t give up. How much empathy do you expect?
I’m eternally grateful for the assistance I’ve obtained on this forum. I took the advice to heart and it paid off in spades. I consider these people experts, and followed their advice and while doing so, ask for details that would allow me to better understand, but I was still following the advice. So, no one can help how you feel, but in this case I believe it’s unwarranted.
Hi , as PMR pro says, also I've never gone for this 7mg one day and 6mg another day and then say I'm at 6.5mg. I think that way is confusing to the body. Also, at those low doses you are probably better off only reducing by 0.5mg, so a taper, plenty in FAQ'S, of 7.0mg to 6.5mg. I work on a theoretical timescale of five weeks, but it's only theoretical. If I don't feel comfortable at the end of five weeks I stay there until do and then start the next taper. In your possible case that would be 6.5mg to 6.0mg. This is not something that be rushed. If you do rush it then you are likely to be back where you were at the beginning. Good luck.
I don't plan to do more than 0.5 a month. But I hear you saying it's better to cut my 1 mg pills in half and take 6.5 each morning than to do the alternating 7-6 thing like I have been doing.
I will start that tomorrow. That makes sense to me. Thank you.
It would be easier to answer your question if all bodies were the same and life didn't vary. Your adrenals could be working ok but you have some event like, a bad night, a bit of a virus, it’s a very hot or cold day, hungry, you became annoyed at something or your internal inflammation is up but not symptomatic. Then you decide to go and do some sort of work or exertion. All of a sudden the adrenal glands that were giving you enough cortisol can’t ramp up production. If it can’t, you feel dreadful. The first thing I did before considering increasing the dose was to cut down all other non-essential stressors. Bumping the dose up just switches the process off again, especially if it is above 10mg. I had months of feeling rubbish until my body cottoned on, but I was determined to try my hardest to avoid becoming dependent on hydrocortisone supplementation for life. Expecting it all to be sorted in 2 weeks may have been a bit optimistic.
As for PMR, we usually say as a rule of thumb is to have a couple of normal weeks pain free before dropping again. You want to avoid a repeat of the last nightmare so I would think back to what you did in your day when you started to feel off. Did you go into a lockdown or did you try to get on with some sort of normality?
My feeling from your posts is that you want a fool proof recipe for success, a timeline and near as damn it certainty but there is none I’m afraid.
One other thing, you say you are on 6.5mg because you are alternating 6/7mg. I’m not sure that is what your body experiences. Your body is having to deal with a change of about 14% every day. What about cutting a 1mg in half (assuming it isn’t coated Pred) and smoothing the curve with a change of 7% instead or use one of the slow reduction plans in the FAQ’s?
I'm definitely going to start cutting the pills in half tomorrow after reading Bcol's response.
As for wanting some defined answer, that's not really what I'm looking for. I'm looking for an understanding of if and when I should go back up.
What I am learning from you here is that my activity and stress levels make a huge difference. Looking back at those two terrible weeks, I definitely kept up my work pace, and it was really stressful for sure.
And I am also starting to feel this on a day to day basis now. I feel worse on days with more stress. Even hour to hour I can feel the difference. This is a big revelation for me. So thank you. I need to sit and integrate this now. Hibernation. Watch more TV. Etc.
The PMR / steroid journey is hard. In my final consultation with Rheumy as I was coming off pred completely, I was told it may take a year for your adrenal function to recover, you just have to get through it. Be patient.
As it happened I did flare 6 months later, but my cortisol had come up and was normal.
Going slow and being gentle with yourself is the way. Good luck
2. PMRpro has explained - and again I’d say every body is different - you are trying to get precise times- it doesn’t work like that.
Stick at ‘6.5mg’ for as long as you want- but would prefer if it were 6.5 mg every day rather than 7mg one day/6mg next day- confuses body…and yours is confused enough.
..and then use a slow taper- either one of these - both are similar - no competition so choose which one suits you best - the aim is the same-
I'm more concerned with AI that doesn't improve than I am with temporary steroid withdrawal. In fact I think this is what confused me last time. After two weeks of nausea, headaches, and diarrhea that did not go away, I realized I had AI (not pred withdrawal). I was trying to ask if there's any way to know whether one should stick those symptoms out or not. I am hearing from PMRpro and Snazzy that it's up to me to decide that, to watch out for potential crisis, and to manage my stress better to get through it.
I will start doing 6.5 every day from now on. I did not know this was confusing my body. Thank you.
I know you are concerned about adrenal insufficiency- and I get that, and I’m not being unsympathetic believe me.
But I also think you are overthinking things [understandably] and honestly not doing yourself any favours by getting so stressed about it… and you must remember we are not doctors so can only give you general advice built on our own and others experiences on here.
You need to try and calm down as much as you can - and discuss with the Endo at the appointment later in the month… is there anyway you can get an earlier appointment as you are obviously getting very worried about the situation.
Emanuel, You can learn from our experience as we can learn from yours, although most of us have not had the crazy journey you have had since diagnosis. And now you know that we are not all the same with any of this process.
There are common factors like the AI management issues which start at 6/7mg pred, many of us stuck at 5mg feeling pretty unwell and fearing worse as we continue the taper. In my own case I added back the extra 1mg before bedtime, with my doctors approval, because stresses in my life made it difficult at 5mg. Then a urine infection forced a short term rise to 10mg, where the euphoria carried me through and made me feel great again. Now I’m back at 7mg,facing that frightening downward slope again and knowing what to look out for, but also knowing that it’s ok to stick at the level which gives me a life. There is no rush!
I am going to share what I did although nothing like as experienced as the others here. I was stuck at 7 for months and each time I went down .5 I soon went back up again. So I started reducing by .25. Fiddly but it worked. I got down to 5 quite easily and now going to start the next .25 reductions. A pill cutter is essential and not being 100% fixated on accurate bits as over 4 days 4 quarters make a whole if you follow me. Good luck.
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Adrenal insufficiency due to prednisone tapering 
Down to 1 mg and flare up
