I’ve been reducing steroids for many months and am now taking one mg every fifth day. I feel ok. I also had a molar extracted a week ago and despite my fears it went very smoothly mostly thanks to a wonderful young dental surgeon. No adverse reaction to that so am I safe to stop preds completely or do I continue with longer space between doses?. I take enteric coated tabs so cannot cut them. As always many thanks for your advice. Best wishes to all
Is this the end or …?: I’ve been reducing steroids... - PMRGCAuk
Is this the end or …?
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Ana-16
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It is always a bit of a gamble and your tiny dose is no risk, if there is a logical conclusion to your taper system, I would carry on to the end, or just stop on a good day. Fingers crossed.
Thank you. Fingers firmly crossed
PMRproAmbassador
That is great - really promising! It is up to you - you could just keep increasing the space until one day you forget altogether and realise nothing happened! Or you could try just stopping!!!
Why not try in six days, then seven days etc etc and then when you feel happy just STOP!
DorsetLadyPMRGCAuk volunteer
Maybe extend to every 6th then every 7th day as suggested… but you have to bite the bullet one day!
Thank you x
How exciting, I afree to try every 6th, 7th etc until you're ready to to jump off. Look forward to hearing how it goes x
If you should get any symptoms of PMR returning once you are off the steroids then make sure you start on steroids again immediately. I got no guidance at all from my doctor and so tried to ignore very minor aches until everything was very soon as bad as ever and I had to start at 15mg again. All the best.
This is how I weaned off pred. Like you I couldn’t split the tablets so starting taking one every other day for two weeks then went to one every three days etc etc. I worked my way up to one every seven days for two weeks then stopped. My advice is to spread the dose for as long as you feel comfortable.
During my reducing, I was surprised that my reluctance to come off pred was more mental than physical. I think it’s probably natural to worry when you’ve been in so much pain and taking pred offers a lifeline and a chance of a normal life. I guess there is always a worry once you reduce and think about come off completely.
I think you are doing an amazing job. Good luck, also sending a huge but gentle hug ♥️
That just about sums up how I feel. I’m following that trajectory. Thank you for the encouragement x
That's fantastic news! Very well done 💐
Ana-16• in reply to
Thank you. I wish everyone a speedy recovery…. but don’t rush it x
The level of prednisolone in the blood halves every 3.5 hours. That means it has fallen by 99% after one day and by 99.99% after two. By Day 5, there has effectively been no steroids in your blood for several days. If your symptoms haven't started to come back by then, it would seem reasonable to think they won't. Fingers crossed!
By Day 5, there has effectively been no steroids in your blood for several days. If your symptoms haven't started to come back by then, it would seem reasonable to think they won't.
That’s as may be, but if the underlying illness hasn’t gone into remission, then the inflammation will build up again - and the effect of that may not be felt as ‘pain’ for a few weeks or even months. Why we say, you need to off Pred for some time to actually be sure.
So even if you are taking a tiny dose and you’re in no pain how is the inflammation still there? Why aren’t you hurting?
If you are on a small dose it may be enough to control the inflammation, however if you stop the Pred and if you still have PMR, it allows the inflammation to build up again day by day until it’s enough to cause pain - and then you to notice.
Same thing happens at any time if you are on too low a dose, it takes time to build up again. For some it takes a few days, for others it can take a few weeks.
Yes thank you. I understand that. I will be cautious and go very slowly
The substances that cause the inflammation are shed in the body each morning about 4-4.30am. The pred combats that so it stays at a low level in the body.
We liken it to a dripping tap and a bucket of water. If the bucket is almost full and the tap is dripping into it, however slow that is it will eventually fill and overflow. If you scoop out the same amount of water as it dripping into it - it won't overflow.
So is that why some people take their Pred in the middle of the night? So what makes the ‘substances’ finally stop shedding? Do the adrenals have to be active again?
No, your PMR or GCA has to go into remission - nothing to do with adrenals and then your autoimmune system works as it should . This is an excerpt from my introductory post -which I did send to you previously. I know it's a lot to take in initially which is why I always say, keep it, and then you can refer to it as go along.
The initial high dose (PMR: 12.5-25mg, GCA: 40-80mg) may give a feeling of euphoria and should relieve at least 70% of pain as it takes control of the built-up inflammation .Some people get an almost immediate reduction in symptoms, for others it may take longer, but if you feel no better after a week or two, then maybe you don’t have PMR or GCA, or the dose is not high enough, or you think you can continue live as before your illness. If that happens you seek further advice from your doctor. However, your body continues to produce proteins (cytokines) every morning, so all the time your immune system is compromised by the GCA/PMR you need to take enough Pred to ensure the inflammation does not build up again. It is a balancing act, you obviously do not want to take too much Pred, but you need to ensure you take to enough to control your symptoms.
A study found that taking prednisone at 2am, prednisolone at 3am, was the optimum time to minimise morning symptoms as the pred was lying in wait for the inflammatory substances when they were shed and they got no chance to wreak their evil work! The shedding is caused by the immune system and happens anyway but in autoimmune disease something goes wrong and the immune system doesn't recognise body as self and turns on itself and can be far more intense than normal. In most disorders that doesn't often change but PMR and GCA are different and usually at some point this derangement runs out of steam and dies away.
Yes I did read that somewhere, just how do you cope with getting up eating something, taking the meds then trying to get back to sleep?! ado you think it would shorten the life of the disease?
I did that for about a year to deal with an intransigent flare, and found it very helpful. Would have a small helping of plain (and not skim milk) yoghurt ready in a cup with a spoon, and the dose measured out, and water to swallow the pills. A radio alarm would gently awaken me, I'd have the yoghurt and pred, and more often than not a bathroom break as I was up anyway and would therefore not wake up as was my wont in those days at 4. And although I'd thought it might be hard to get back to sleep that hardly ever happened, maybe a handful of times in all those months. It's certainly a dose timing I would recommend at least trying.
Well I don't - I have a version of pred you take at 10pm and it releases at 2am! Not available in the UK and fantastically expensive in the USA - a benefit of where I live. No, nothing will shorten the life of the disease, there is no cure for any autoimmune disorder as yet, but it makes living with it more comfortable. Many patients with PMR are up in the night anyway and take their pills, others, as HeronNS says, find they manage it fine and do get back to sleep. And yet others buy gastroresistant capsules so they can take their pills before bed and they don't release until later, further down the gut, like my tablets.
PMR is classed as a self limiting disease - so it seemingly comes along when it feels like it, wanders along as long as it long as it like, and then disappears [hopefully] when it’s had enough.
All you can do is manage it whilst it’s around…and honestly the sooner you come to terms with that, then the easier life will be.
Accept for now this is what it is, is not giving in - it's actually taking control.
Of course, if the immune system is still dysfunctional, then some degree of relapse is likely. But it's a Catch-22: if one never stops taking steroids, one never knows one's immune system has corrected itself. The good news is, every step down the taper (that doesn't result in worsening symptoms) brings hope, not just the final milligram.
There is no "degree" of relapse - the only variable is the dose each patient requires to manage their inflammation. If it is still active and you stop pred, sooner or later the inflammation will build up to the level it was at diagnosis. A running tap and a dripping tap will both fill the bucket - the only difference is the time it takes to overflow.
The leaky bucket analogy can be applied to lots of dynamic systems; but it's still just an analogy. The fact is that - thankfully - the immune systems of most PMR patients correct themselves over time; but only by weaning themselves off steroids do they find this out. There is no law that says a relapse must be as severe as the original (prodromal) symptoms.
The analogy isn't a LEAKY BUCKET, it is a DRIPPING TAP. We use analogies to explain a concept to non-scientists - and it is approved of and has been adopted by Professor Sarah Mackie.
I know. I'm a retired scientist. "The leaky bucket is an algorithm based on an analogy of how a bucket with a constant leak will overflow if either the average rate at which water is poured in exceeds the rate at which the bucket leaks or if more water than the capacity of the bucket is poured in all at once."
en.wikipedia.org/wiki/Leaky...
So am I. But I don't usually use it too much on the forum since most people AREN'T scientists.
So is PMRpro - and a very respected one on this forum.. and she also explains in layman's terms for those who aren't..
Absolutely
Indeed. That's why it can be frustrating when one avoids jargon, only to be pulled up for not being precise enough. However, it's crucial to make clear when we are using an analogy or simplification, to avoid it being taken too literally or stretched too far. Striking the right balance is a skill I learnt when employed in science education.
If the underlying autoimmune disorder creating the inflammation is still active but at a very low level, it can take some considerable time to build up to a level that can be felt, in some cases months. There is also the fact that the disease activity appears to vary over time and even be dormant before starting to build again. A week definitely isn't long enough to say your PMR is entirely in remission.
Many many thanks to everyone who has taken the time to respond. I will err on the side of caution and continue a slow steroid decrease lest PMR rears its ugly head again.
Good plan - and good luck.
Ana-16 I have been off prednisone almost 2 1/2 months. Just a day or two after going off I got a weird rash on my shoulder. It didn’t hurt or itch. My daughter noticed it. Days after that my left ankle got fluid in it. I only noticed that when I put on my sandals. A few days after that my fingers became sore. So, I guess I’m saying all sorts of issues may appear once you go off prednisone. I’m due for bloodwork to measure my inflammation markers and will have that in late October. I should mention I was on prednisone for 5 years. Good luck to you! Just don’t worry too much if your prednisone was masking some issues.
just a little 😊
I did my last 0.5mg(hopefully, maybe) on a five week DL taper. So far three week's and no problems, but early days yet so not counting any chickens. 🐥🐥🐥. Good luck.
I was taking one mg every other day and kept forgetting so I just stopped. I had no symptoms for nine years! I think you could safely stop as well. Good luck!
That’s encouraging
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