I have tried to come off Prednisolone for PMR for the last 8 years by slow reduction.
However, my diagnosis has recently been changed to MS and advised to definitely come of Steroids. Fatigue is a massive problem for me.
I am currently on 5mg of Pred daily but have just had opposite views from 2 Doctors about Prednisolone reduction. Both agree a slow reduction is best but one suggests stopping 5mg one day a week for 2 months then stopping 5mg for 2 days per month and so on.
The 2nd Doctor refutes that option and suggests reducing by 1mg of Pred on alternative days of the week for a month then the following month another 1 mg. etc.
Both options are a slow reduction taking about a year. One gets my body used to days without Pred, the other slowly reduces the daily dose.
Advice about the preferred option is very welcome please.
Linnetbird
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Linnetbird
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As you have been on Pred for so long you need to think about adrenal activity as well… and as you mention fatigue that indicates they are already struggling - so really as gentle as you can.
Thank you so much for your speedy response. That is as I thought from all the good advice here. Just did have a moment when I though a day without Pred after all these years might just shock my adrenals into action!!!! 🤗
Well it MIGHT, but also might make you feel rubbish - so maybe not such a good idea. There's a big difference between 5mg and zero - might be okay on 2 or 2.5mg..😊
Hello Linnetbird💐 I am very sorry to hear you have been diagnosed with ms.I hope you get lots of love, care and support from those around you.
Did you ever have PMR? Or were you misdiagnosed?
In my tiny experience of taking pred I find small reductions work best and would agree .5mg would be better.
Thanks for your concern and advice. MS Neurologist thinks the PMR diagnosis was not Flares but the Relapsing/Recurring stages of MS and I have now moved into the Secondary Progressive stage of MS. If I had been given a Brain Scan at the start 8 years ago in stead of recently (because I was getting worse and making no progress) it would have identified the difference between PMR and MS and saved me years of Pred. Aaargh!!!!
Did the 'flares' (relapsing/recurring) correspond with tapering pred? And would there have been any benefit from taking years of pred?I hope the fatigue lessens and the tapering goes well.
It seems as if you slipped through the net with your misdiagnosis. Years of taking pred - this has its challenges.
You must have felt so poorly and not understood why your health was getting worse.
I am sorry to hear about the MS, and hope it progresses very very slowly. I also have very atypical PMR and was scanned 5 years ago for MS. I would like to ask if you have had any of the typical MS symptoms, like numbness or sight issues or paralysis of limps? Or has it been fatigue, brain fog, decreased muscle strength ect.? Thank you for your time.
Morning Krillemy, The last 3 of your list. Fatigue is the biggest issue. I can only do about 2 hours sitting, chatting, slow moving round the house before I need to lie flat on my back to rest and often sleep. At the same time brain fog finally kicks in and I can find words failing me hence another reason to rest. I have to plan my week. If I do too much muscle pain also kicks in and my mobility is gone. Can’t even get up to wash or clean my teeth. Walking I can only manage about 25 metres with Sticks and help. No fun really.
Thank you for your fast reply. I hope the doctors will be able to help you better now that they nkow what it is. Lost of new drugs on the market. Best of luck
Your problem getting below 5mg might be the adrenal glands having to wake up again, so take it slowly to give them a chance to do so. I'd used tried and tested methods such as Dorsetlady suggests as that is what the expert consultant rheumatolgists in PMR advocate. For more info see posts on adrenals that people have posted in the forum and FAQs
BTW a question for the techie experts eg PMRpro - I've always wondered why they don't use steroids on people with MS as it is a type of autoimmune illness albeit a special case that comes under neurology rather than rheumatology - any reason - or is it too complicated to explain and a totally different kettle of fish? I know there are different types of MS as two of my friends have it, one relapsing remitting and one progressive
They do for acute episodes/flares to reduce the neurological inflammation. It depends on the type of MS, steroids are used for exacerbations of relapsing/remitting to return the patient to their baseline function as quickly as possible. Patients tend to be compliant with high dose steroid treatment. But it doesn't stop the progression - and these days that is the aim and hope.
Thanks for the great explanation. I remember now my friend who has the relapsing type was given a massive dose of IV steriods when she suddenly lost some of the sight in one eye. That turned out to be part of her MS diagnosis. There's also someone in the Yorkshire PMR support group with MS who does the OMS diet and she's doing and living very well despite MS, far more active than me
What SORT of doctors? Rheumatologists? Neurologists?
After this sort of time I would want some input from an endocrinologist whose job is the supervision of such things. Your problem here is (maybe) purely adrenal if it really is "just" MS (in the sense of MS and not PMR). But non-endos tend to underestimate the task of regaining adrenal function. An endo would probably switch you to hydrocortisone and taper that to see if you can as it mimics natural cortisol production better and is more likely to encourage the process.
Well you need one of those again before they suggest you just have days with no pred at 5mg daily dose. From someone who knows if it is worth it at 5mg (possibly not yet) and how to interpret what they are looking at.
Thank you so much to everyone who has replied. I value all your comments. Such a supportive site. Will check endocrinologist and do normal slow reductions.
I had to go much slower than that and I was on a lower dose, from 5mg to nothing has taken me over a year. My rheumatologist got me to reduce 1mg every 2 months (we negotiated as he wanted 1mg every 3 months. I went slower by reducing by half mg in the latter of the 2 months. When I got down to 1mg I split it in had and did that for 2 months. I then did half mg every other day then twice a week. Painfully slow but I have been off them for a couple of weeks now so we shall see.
I know which one I would prefer. I was on 5mg for months and on the odd days where I forgot to take my pred, I realised what I had done because I felt so crap and it took a couple of days to feel better again. On the other hand, I am now reducing by 0.5 mg at a time, and I have hardly been noticing the step down. I have my fingers crossed that that might mean that my adrenals will be in reasonably good shape when I get there.
I forgot my 4mg dose last night at 5pm, while confusing myself loading my pill box, and was wakened at 1:30am by severe pain everywhere. This requires a lot of patience! Going to 8 3/4 next week, fingers crossed. If it's bad after 3 days, I'll alternate 9 with a lower dose 2 days a week. Not over this at all, my CRP is 20, up not down.
I would use the DSNS taper at 0.5mg each stage, over 38 days*, which would still take just over a year and be more 'gentle' than the reductions that have been suggested.
* Starts with one day new dose, 5 days old dose.........
very sorry you have MS. Quick question, please, were you diagnosed by an mri of the brain, or a lumbar puncture? I was diagnosed by 4 out of 6 specialists some years ago, but already had a lot going on, medically, & told the rheumy that I wanted to continue my life without a likely diagnosis. They wouldn’t do a lumbar puncture because I was paralysed from waist down for six weeks, & they feared the paralysis could return. Thanks, & wishing you good support & help, & sending a hug, S x
I was diagnosed April 2023 and started at 15mg. I am now down to 4 mg and tomorrow will reduce to 3 mg. Once I got to 10 mg I started to reduce by 1 mg monthly by alternating days on the new dose for two weeks and then the new dose solely for two weeks, then going down another mg. At times it has been hard, especially when starting the new dose as I have had a lot of fatigue but I have paced myself and got through it. I didn’t give in to the temptation of going back up and it has worked for me - so far. I appreciate we are all different and this may not work at the very lowest levels. Time will tell.
Mine is not advice for anyone ... it is my personal experience with Pred. I have unsuccessfully tried reduction numerous times over 5 yrs, then when I was down to 4mg daily, was painfree and content, to go 3mg brought pain; I said leave me @ 4mg ... on that for over 1 yr., now my desire is to reduce, so alternated 4 and 3 for months and now mostly 3mg ... just glad rheumatologist allowed me to monitor myself. I am afraid of getting down to 2 ... When i look back, I was completely debilitated by PMR, and rheumatoid arthritis also took over my hands, then MTH Methotrexate was added 2 yrs ago. That's why I am working at getting off Pred.
Your body has it’s own unique chemistry and will guide you throughout the tapering process. Symptoms come with each reduction, may last several days and when you closely monitor their pattern it becomes familiar. You and your health care providers can make a plan to taper, but your body will express the need for adjustments. These are common messages from your body; Go slow, slower, stay at ?mg not ready yet, go back up! It’s frustrating because we and our healthcare providers become impatient when our body doesn’t cooperate with the plan. Just hang in there!
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Trying to come to terms with PMR.
6 years to zero prednisolone
Yet another flare
PREDNISOLONE? 
Any advice welcome
