I recently did a non-gradual taper from 7,5 to (approx.) 6,8 mg prednisone. As expected I took a bit of a dive the first couple days, but then I had a few ok-days followed by some bad days etc.
This pattern continued for one and half month with a end result of: 42% ok-days and 58% bad days, which is markedly lower than a "normal" month with 70-75% ok-days. So I decided to go back to 7,5mg. I have been on 7,5 for a little more than a month and have had 80% good days.
My questions are: did I give up the taper too soon? Should I give tapering another try, but this time with a slower method? Or does it sound like that 7,5mg is the ideal level for now?
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Quintius
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As per your previous post do you think it’s your illness or adrenals glands making you feel like you are? You don’t actually say what the issue is -good days v bad days can mean very different things to different people.
If you think adrenals, maybe stay at current b dose a bit longer - then use a slower taping method… that really is the best way to nudge them into working. A selection here -
A "bad day" is most times a day where i am exhausted, feel like having the flu and have sore - not hurting - muscles. Also my eyes will often get very watery.
I find it hard to say whether it might be an adrenal issue or the illness, but my intuition says: adrenal glands. I will take a deep breath a start a slower tapering as soon as I have finished some work that needs to be done. Thinks for your reply.
The exhaustion sounds very much like the adrenals not liking being woken up. I had trouble putting out my arm to use the zapper to change the TV channel I felt so tired!
I feel quite good on 5mg but keep trying to get lower. It’s been 4 years now starting at 15 and 6 months trying to get below 5mg. Sometimes I’m tempted to go up to 6mg! Take another paracetamol or sometimes one ibuprofen
But that isn't necessarily a good thing. The symptoms are being caused by systemic inflammation - and uncontrolled systemic inflammation can store up a lot of things down the line. It causes or increases the risk of many more serious things such as peripheral vascular disease which can damage blood vessels and compromise blood flow to tissues and contribute to cardiovascular disease, depression and cancers to mentions just a few.
Personally, if 1 or 2mg more pred made a significant difference to my quality of life and meant I didn't need to add OTC painkillers, I would always choose the pred. OTC painkillers also have adverse effects on the cardiovascular system and kidneys when used long term, even in small amounts. Even if you are just 1/2mg below the dose required to keep the inflammation under control. it can build up over time until you are back where you started and needing a higher dose to sort it out.
I find it difficult to distinguish between what is adrenals waking-symptoms and what might be the beginning of a flare-symptoms. Thus difficult to decide whether to go 1 or 2 up or tough it out.
There are NO "adrenal waking" symptoms. If your adrenals are slowly waking up and you are matching your speed of taper to that, you shouldn't notice too much. Not keeping up will introduce fatigue but not PMR inflammatory symptoms.
That is why we have the flare protocol - add 5mg for a few days and go back to 1mg above where you had the problems. If it is a flare - the feelings get worse, If it is adrenals the tend to stay the same or improve over a couple of weeks. Stop overthinking things.
I agree with DL. If it is poor adrenal function which can give you exhaustion, weakness, vague aches, feeling down etc, that can go on for weeks. Sometimes I took a 2-3 months in between 0.5mg drops. The only way to get through this is toughing it out and being kind to yourself. But, if it is PMR pain you can’t do this.
So, “Bad days” needs more description to know what you mean. Are you doing more on the good days only to suffer on other days, especially when reducing?
Your description of poor adrenal function pretty much macthes a description of my bad days. Also I tended to work somewhat too hard on the good days. Stupid, but also unavoidable as I have to make a living. Toughing it out is not an option if it means 2-3 months of being unable to work. Or almost unable. I will give a gradual taper a try and cross my fingers.
If you can’t afford to stop working you may well find you have to shave off other parts of your life to help your body cope. I had to seriously curtail busyness in order to survive the things I couldn’t avoid.
Popping up the dose to make life easier just puts off the evil moment of going without and you could end up getting stuck. I found 7-5mg the worst range because it was not enough to give me the daily requirement of steroid to function but still enough to suppress the adrenal glands such that I was easily in deficit.
I have shaved my social activities to a minimum, but having three grown children with a variety of grown up challenges means that my minimum is nowhere near zero.
Did you work when you were in the range 5-7? And how did you manage to taper in this range?
No I wasn’t working. I had to give up my career aged 54. I just couldn’t deliver safe practice (or stand up for that matter) on the doses of Pred I was on for GCA and then when the golden days of low Pred didn’t actually happen due to very slow adrenals it wasn’t feasible. By then it was too late to keep my registration. Then I got long Covid for 7 months and that was it; I realised I was no longer up to it physically. I stopped Pred in the middle of long Covid having been on 1-0mg for a year already.
Saying that, I had two teenage/young adult children with ADHD and Tourette’s and high functioning autism to keep on the rails of life. I also had my husband’s rather unpleasant father with failing health living with us for the whole time. Oh and 2 rescue dogs with issues. I think the only thing different was that I didn’t have to commute to my stress! Actually no, working would have meant putting enormous energy into keeping up appearances and having to keep ignoring what my body wanted.
Reducing between 7-5mg was an average of 4-8 weeks per 0.5mg with the 0.5mg added in gradually over that time. In between chores/interactions/hanging around this forum, I slept, sat and felt sorry for myself. At 5mg there were more better days than not but my reductions were even slower after that and got as long as 14 weeks sometimes. I also stopped saying yes and became wary of over doing it simply because of satisfying inner demons or identity.
Thank you for your elaborate reply. Every case is different, but it is still immensely valuable to learn how other people coped, when it comes to dealing with symptoms, finding the right dose, the tapering process etc. I will add your experiences to the archive.
When it comes to functioning in everyday life I would say that your history sounds as stressful as most jobs.
I'd say the same as DL and Snazzy have already said.
And however you want to look at it, you can taper in cold turkey steps and feel awful most of the time while doing it or you can sneak in the new dose more slowly and feel less awful. That is the whole idea of the slowed tapering, introducing the new dose gently so you have a better quality of life.
As mentioned to SnazzyD I will do a slow taper and see how it works. But thought (dreamed of) it would work a non-gradual taper. It was a less than ten percent step down!
Snazzy will tell you of her tiny steps down and how long it took to adjust. Someone else has posted in the last day about a 1/4mg drop that left them feeling dreadful. Her rheumy at the time said it had nothing to do with adrenals - a new rheumy tested and found NO adrenal function. It sounds crazy that such a small change in dose can make you feel so ill - but if you do something that needs a boost of cortisol that doesn't come it may well happen.
I just met my rheumy. He said is was unusual for respond so strongly as I did when I lowered the dose 0.6mg. However he recognized that it did happen. Also he recalled his time at a lung ward where some patients gained weight by inhaling 0.1 mg prednisone (of some kind).
Doesn’t matter how small a taper is, if it’s less than your body/illness/adrenals require- it’s still a step too far!
Plus as we have said, working makes it more difficult.. and I appreciate you aren’t in a position to stop working, so you have to find ways to manage your situation. 😊
Quintius, I think there is a message there for you ( 80% better days at 7.5) Perhaps your happy place, for now ! My excellent , but sadly now retired, rheumy ) kept me at 7 mgs for a year before any further attempt to very slowly decrease. ( and I wasn't working ) Around that dosage seems to be a watershed level at which to stabilise before making any changes and could be very helpful.
It is so difficult to figure out when it comes to the right dosage. I think I will give a slow taper a try in a few weeks time when I have a hole in the calendar. But I will keep your story in mind and be prepared to stay at the present level. I came all the way from 80mg so 7.5 feels very low
Try not to over think what you are doing. Your body will tell you if you are on track. Sometimes it takes a few days for things to filter out. Over my three year battle the flares came and went but I always tried to follow how my system was responding. That combined with my wife’s support I perceived. She has been there to make sure I stayed on track and not create problems, that weren’t really there. I am very blessed. Hang in, enjoy life, and stop running a comparison of good vs bad days. Everyday you are vertical and can see the sunrise is a good day. God Bless.
yes try again with a patient slow taper. You seem to have good instincts for this. Give your body time . Tapers are the hardest thing I have ever done. Mostly I have failed on 2 psychotropic drugs, steroids are different . Good luck and go slowly stay at a level until you get decent results only then decrease.
It's ok only you know what you are feeling. You are trying to do the healthy thing . Tapering as I said is the most difficult thing I have ever done. That includes the Iron man triathlon and Boston Marathon .
Good luck trust yourself and know that however this turns out it is right for you.
I can relate to every symptom you mentioned and more so I feel your pain especially trying to work while reducing. I got down from 15mg to 6.5mg but I felt really unwell, headaches. Face pain , ear ache, aching in various parts of the body muscle fatigue, I could barely function I was that tired. Eventually I went up to 10mg and things are better but still having bad days. I've been referred to endocrinology for help to reduce. My concern has always been GCA but I was reviewed a few weeks ago by my rheumatologist and he doesn't think that it's GCA he said it's steroids withdrawal. I'm staying at 10mg till I see the endocrinologist. I hope things settle down for you I've got my fingers crossed for you 🤞🤞🤞
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