Advise and Answers please
Posted , 4 users are following.
I am back again having a little moan.
Diagnosed in May, have reduced steroids from15 to nearly 8mg, now second failed attempt at this and now back up to 9. Grrr.
I don't know whether I am more frustrated with having to increase dose because of a flare for second time in 4 weeks, or that I don't seem to be aware this can happen any time.
I wasn't gardening or lifting, just standing in kitchen for few hours decoupaging a box over 3 or 4 days.
Last time I reduced I had a flare after a week, this time it took two weeks and feel like. . .(not very good).
So advise if you can, shall I stay at 9 mg ? and for how long and then maybe reduce to 8.5.
This seems so hard, when it shouldn't be.
Mentally I feel rubbish, can't make decisions when I do I change my mind, does steroid use do this to you?
I had no idea what a bumpy road this is, and I shouldn't moan I am sure many of you have this worse than me.
Any advice would be helpful.
Thank you
Julia
0 likes, 12 replies
Anhaga julia85224
Posted
It's discouraging isn't it? Are you reducing a mg all in one go, like one day you take 9 and the next and thereafter you take 8? Or do you alternate the lower dose in over a few weeks, gradually increasing the days you take the new dose until you are completely on that new dose? It's called the dead slow nearly stop plan, and it helps avoid steroid withdrawal pain which is so much like PMR we think we are having a flare.
I had trouble when going from 10 to 9, so after I stabilized again at 10 I started using DSNS method, and have now got down (I think) to 2.5 so I can attest to its effectivelness. It's slow, but it works for many of us.
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
julia85224 Anhaga
Posted
Apologies for late reply,
I normally get an alert if I receive a response.
Anyway, on my last attempt my gp suggested one 8 and one day 9, fir a week, which seemed to work to a couple of weeks, then reduced to 8 was fine felt well until last week and have felt rubbish ever since.
I have increased y 9 although better, my get up and go has gone.
Hope you are well.
Anhaga julia85224
Posted
I agree with the other advice that you should stay at 9 for a little while. But try to rest, get other things in your life more relaxed, and try 8 again in a little while, perhaps through the dead slow method rather than alternating. I often have sort of kicked the tires with a reduction, just testing you know, to see if it will take. And sometimes the first time it doesn't take, but the second time it does. I have never let myself get to a full blown flare, but have skirted the edge of the volcano a few times. Most recently when I was attempting to get to 2.5 from 3. But, you know, the other day, nearly through my second attempt, I was thinking I would take 3.5 one morning because I really didn't feel all that great. However it wasn't really PMR as I remembered it. Just a generalized malaise. I looked at the 1/2 5 mg and the extra 1 mg sitting in front of me and something said to me, put that 1 mg away. Give it a bit longer. So I did, and the very next day I had turned the corner. In fact it's quite extraordinary how well I've been doing the last few days. No more 3 mg doses, completely on 2.5 for a couple of weeks now, so fingers crossed it's worked this time. This is the beauty of the DSNS method. The first time I tried going to 2.5 I stopped just over halfway through as I experienced pain returning to my shoulders, which I hadn't since starting pred. It was easy to go up that extra 1 mg for a few days, then settle back to the 3 mg for a few weeks before trying the taper again. I plan to stay at 2.5 for a while as I know it's pretty knife edge. This long story is really just to encourage you that at some point, going slowly enough, a taper will work. Even if you have to try just 1/2 mg at a time and use the dead slow method. As Eileen says, it isn't slow if it works! It has taken me just over three months to successfully, I hope, complete taper from 3 to 2.5.
julia85224 Anhaga
Posted
You're encouragement is so much appreciated .
You have done so well, I will stay at 9 for a while, 5 or below seems a long way off.
But so did 15-9, persevere I must, and patience I must work on.
Anhaga julia85224
Posted
nick67069 julia85224
Posted
as you probably know, pred does not cure PMR, just manage the symptoms and enables us to live semi-normal life. The right dose is the one that you can live with. If that is 9mg for the time being, so be it. Trying to reduce will only cause you frustrations. Maybe after a month or so, you can try 0.5mg reduction using DSNS method. You don't win the prize for fastest reducton...just flare.
julia85224 nick67069
Posted
Hi,
Bless you for you're kind words,
I will stay at 9 for a while, then I am going to do the dead slow method.
Hope you are well.
EileenH julia85224
Posted
If you have got down to 9mg in 6 months you haven't done badly. I had a flare in February - I've only just got to 9mg again. That's after 12 years of PMR and 7+ years of pred.
But you are NOT heading relentlessly for zero pred - you are looking for the lowest dose that manages the symptoms as well as the starting dose did. That means that one dose manages them - the next one down doesn't. It sounds as if you have reached that point for now. It doesn't mean you WON'T get lower, it just means not yet. Even using the Dead Slow approach that Anhaga has given you the link for you won't get lower than the lowest dose that is enough to manage the symptoms at any given stage.
If you start at 15mg and the "right" dose for you is 9mg, then you will reduce with no problems down to about 10mg, then it will get more difficult. If your "right" dose is 5mg you will be able to reduce further easily and quickly - but whatever your "right" dose you will get a return of symptoms if you overshoot. Steroid withdrawal starts immediately you change the dose if it is going to happen - your return of symptoms after several days at a new dose is far more likely to be due to the new dose being just slightly too low and allowing the inflammation to mount up again until it reaches the point where it overflows and you feel it.
Both PMR itself and pred can mess up the executive decision process - we've all been there. I don't have a problem with pred - I can't do it for food and cooking complex meals. It used to be my hobby.
And in case you haven't already gathered - the pred is ONLY managing the symptoms, nothing more. It isn't doing anything about the disease process, that is an autoimmune disorder that is causing your immune system to attack your body tissues in error. that is still chugging along in the background. It's as if you have flu or a really bad cold going on and you are dosing yourself with cold remedies to feel well enough to go out - doesn't change the viral infection at all. That only happens when your immune system sorts it out. In our case - it only happens when the immune system sorts itself out and stops damaging body tissues and causing inflammation.
Stop at 9mg for the moment - one group likes to keep patients at 10mg for a year and finds that reduces the flare rate from 3 in 5 to 1 in 5. Give it a couple of months and try 1/2mg again - if it doesn't work, don't stay down at 8.5mg. Forcing a reduction that your body isn't ready for won't work - except to cause a flare.
julia85224 EileenH
Posted
Hi Eileen,
Good to hear from you,
I am grateful for all the advice I receive on this forum and you're expertise is 'reassurring, I have felt like I am going quite mad.
I will stay on 9, for a while.
I am under the illusion that the sooner I get to a low dose the pmr will have gone. . wrong I guess.
Just want to be able to do stuff without paying for it physically for days after.
Moan over.
I hope you are well.
EileenH julia85224
Posted
No - doesn't work that way round! You need the pred to manage the PMR, you will only get to a lower dose when it has gone.
It's all about pacing - there are things I can't do but not many. I know what I can manage and stick to it. Very occasionally I overdo it and know about it, usually of an evening where I "come over all funny", but going straight to bed and sleepimg until next morning works almost every time - sometimes it is a major struggle to get undressed and teeth are ignored! But you do get to a stage where it really mostly isn't too bad,
There is a link for pacing stuff at the bottom of this post
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
julia85224 EileenH
Posted
I know you are right, must pace and be patient, Hmn not easy, but necessary.
FlipDover_Aust julia85224
Posted
This was me!!!
"Mentally I feel rubbish, can't make decisions when I do I change my mind, does steroid use do this to you?"
It's called 'brain fog' and is a side effect of the pred. It wasn't until I got to 7mg that it finally started to clear. I'm still vague, and have memory issues, but the are so vastly improved I don't complain about it!
The others have said what you need to know about tapering