Hi I have not posted for sometime now but could do with some advice. Since originally diagnosed in Aug 2015, I have been reducing quite happily on the DSNS method .In December I reached 1 mg stage at the point where you start with 1 new ( 1/2 mg ). I started to have pain in right shoulder but presumed it was withdrawal symptoms. I usually allow two weeks for new dose to bed in and my body to get used to it- however it did not subside and then moved to left shoulder and shoulder blades.I decided it was a flare - (It takes weeks to get an appointment with my doctor as she only does part time hours. ) I read on this site that going up to 5 mgs for two weeks to clear away the build up of inflammation and then go back to where last ok.
I did this and the pain went away.My question is how long should I leave it before hoping to reduce again?
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withington1961
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How long have you been on the 5mg? If it is a week or less you can drop back quickly - if you are at the 2 weeks you can probably drop in 2 steps, say to 3mg and then to 2mg and it shouldn't be a problem. You have to try though - it will be fine if your adrenal function was well settled before the flare, if it isn't, go more slowly.
Hi PMR pro. Thanks for your reply. I was on 5 mgs for 2 wks and I have now moved back down to 2 mgs . I was wondering how long to stabilize at 1 mg again, as I intend to do, before chancing a move onto 1/2 mg? Does this flare mean that I will not be able drop below 1 mg as I still have PMR ? I do not want to keep going up and down and having the pain come back too soon. It has now been 2 1/2 years since being diagnosed and at least 6 months of going to physio before that . If I have to stay at 1 mg I would be happy to do so but I would eventually like to come off altogether when /if possible. my question is how do you decide when to try again and should it be even slower than DSNS method?
I think it is fair to say the cause of the symptoms we call PMR, an underlying autoimmune disorder, is still active at present. The dose you are on is so low there is really no concern about it - and trying to force a reduction has a habit of letting in a real flare.Getting into a yoyo pattern often makes the next drops even harder.
confirms my long-held belief that PMR lasts a LOT longer than the 2 years they go on about in so much literature. The average is nearly 6 years. There are people who get off pred in 2 years but they are a minority and are at a higher risk of relapse. They also show that the side effects of PMR-dose pred are minimal.
I think a fairish way to go about it at this level is wait a few months and then try 1/2mg on DSNS and see what happens. But I also believe the activity of the dosease cycles - you may get to a given dose when it is relatively inactive only to find some weeks later you need a bit more. If I were ever to get to 2mg, I wouldn't want to rock the boat!!!!!
PMRpro, from experience I'm sure you're right about the disease activity 'cycling'. Could this be another reason (apart from the usual ones) why it can be so difficult to make sense of Cause and Effect with PMR symptoms despite even the most gentle Pred reductions...?
I don't think it applies with everyone - I think there are maybe 3 or 4 different version of PMR, just as there are of MS. In some people it starts actively for some time but calms down as time goes on. They are able to reduce steadily to zero and stop - providing their doctors don't push them. There may be a smilar but more extended version. Then there are people where it cycles - and maybe also in a shorter and longer version. They have relapses but are relatively easily able to get back on track once they get the measure of "their" disease. It may go into remission between times but because they don't have time to reduce to zero they don't notice. If only they could find a sensitive marker that would let you drop the pred dose quicker when it is quiet...
Yes PMRpro, I think that description where it cycles in a shorter or longer version applies to me. Now at 5.5mg after just over three years. Phychologically, I am getting used to the idea that it will be six years before I get to zero. Anything less will be a bonus!
From experience, and what I've learned from this community, unrealistic expectations about the length of disease course of PMR + around the effectiveness of the Preds in managing it (e.g. the 'race' to Club Zero) just add to the frustrations (or even despair?) in coping with this complex and unpredictable illness. And that, in turn, compounds the Stress Factor - which as many here say, feeds back negatively into the recovery 'equation'.
I think you hit the nail on the head from a psychological perspective, i.e. in the Mind, it might be better to anticipate and plan for a longer time horizon for 'recovery' / getting off the Preds etc - and anything better will be a nice surprise!
It reminds me of the old philosophical joke: 'Pessimists are often happier people because nothing in Life ever disappoints them..'
Of course, you’ve heard about the pessimist who was considering starting a meeting group for like-minded people ? He cancelled it because he didn’t think anyone would turn up.......
By the way, what doseage of Pred are you on currently? I think we were on a similar trajectory not so long ago - I’m currently ‘resting’ on 4mg, ready to try 3.5mg
I well-remember our past conversations about these things.
Currently I'm at 5 mgpd Preds after getting down to 2mgpd - but with gradually increasing PMR symptoms (i.e. pain, stiffness) for a few weeks over the cold and wet Christmas period. So I've 'upped' the Pred dosage a little to try to get the worst of the symptoms under control. Fingers crossed that warmer, Spring weather and sunshine will help in the process.
For me, the dreaded DF (Deathly Fatigue) is by-far the worst symptom of either PMR or reductions in the Preds. It's a real nuisance - to say the least. But, on the positive side, we can hopefully make sense of these things in context - and that might help us from going Bonkers in the process?
As for jokes: As a bit of a reclusive person myself, I once tried to organise a meet-up for similar people locally. It resulted in 17 meetings for 17 people in 17 different locations, all on the same evening. But we all agreed that it was a resounding success!
Well - that’s a bummer Mark, hope the increased dose is short-lived and you get back on track in the Spring. I must admit that my approach to 1-2mg is giving me some anxiety as I haven’t yet experienced a flare - and I don’t want to! I’m still with the walking group but a 3hr ‘recce’ the other day did leave me struggling a bit!
Thanks Rokerman. I'm not too worried since this seems to be the Norm with reductions at lower levels - and I'm sure not helped by the cold, wet Winter weather. I'm cautiously confident that I'll be able to get back on track (i.e. 2mgpd) and gently reducing in the Spring. We'll see...
I put together a simple chart when I tried this before. It involves a bit of number crunching but it allows you to calculate and project a month-by-month percentage reduction that doesn't exceed the recommended '10% at any one time' Rule. And, of course, it's important to track your progress (or not!) against ANY kind of taper with some simple notes re. symptoms (or not) on the chart or in your diary. This at least helps to make some sense of Cause and Effect on the tapering Journey, either way.
Alternatively....(as is often recommended) you can 'stick' / stay on a plateau at your current level: and when you feel continuously better for a while / confident in reducing, take a deep breath and try reducing in a step-down for a few days.... and keep your fingers crossed.
There don't seem to be any guarantees with any particular tapering approach since so many factors can conspire to sabotage the effectiveness of even the gentlest taper (e.g. any or all of: the flu / viruses / comorbidities / weather conditions (yes!) / over-doing things in the PMR context / Stress / injuries / infections / the possible 'cycling' nature of PMR disease course and symptoms, etc) but it might - I stress, might - help you to nudge downwards from 2mgpd with at least lower risks of a flare and / or less severe symptoms if you do have one...
If you want to send me a PM with your private e.mail address, I can send you an example of my chart, an explanation of the methodology / rationale and a blank template. I concocted it in my early PMR days before I'd heard of DSNS (!) but it turns out to work along very similar principles.
That sound very sensible .I will stay at 2 mgs for the next 6 months until hopefully the warmer weather is here. As you say I do not have any side affects that I can tell from 2 mgs and the thought of rocking the boat sound like a no go!!! Thanks again for your advice it is much appreciated.
I was at 2 mg, indeed 1.5, last year and have to say I felt good. Unfortunately efforts to go below 1.5 backfired and it's taken me several months to get back to 3 from a high of 7, and I don't feel nearly as well. So don't rock the boat. I think 2 mg is nearly as good as zero when it comes to side effects.
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