i was down to 5 mg. pred on the dead slow and nearly stop method, doing ok. But when I tried to go to 4 mg., my symptoms started to return so I went back up to 5 mg. for 10 days and recovered back to where I was doing ok again. This morning I took 4 1/2 mg. Here are my questions, I'm hoping someone can help please: 1) should I have stayed at 5 mg. for a full 30 days to continue to let my body adjust or was it ok to go down to 4 1/2 mg like I did because I was feeling ok? 2) if it's ok to go on the dsns method, do I go back on it now (meaning tomorrow I will go back up to 5 mg.) or should I stay at 4 1/2 mg. to see if I can tolerate it? Thanks!
Hi, Twopies: I have not been following the forum regularly, so I do not know your history. How long have you had PMR? How long have you been on prednisone, and how long at 5 mg? Did you have any symptoms at 5 mg?
I sounds (and I may be wrong) as though you think that the dead slow method leads to getting off prednisone? All it does is provide the best way to slowly reduce until you get to the lowest dose that will control your PMR. As long as you have PMR (out of your control!), you will need prednisone to control the symptoms.
Also, as others will point out, 5 mg is often a breakpoint when reducing gets much harder as your own adrenals, which have been suppressed by the prednisone, start to kick in again.
I can't say anything more without knowing more about our recent history, but I suspect you need to stay on 5 mg at least until you stabilize there.
I have been having exactly the same scenario as you - after 3 1/2 years, I'm down to 4 mg and then "it" started !
I increased to 4 1/2 mg for a month, no good, so increased to 5 mg and I have been there for three months and the overall pain seems to have decreased somewhat - but not completely. I'm going to give it another month and see what happens. I may increase another 1/2 mg then.
I definately see that small incremental increases (1/2 mg) seem to have an effect and it is not necessary to take "big" leaps. As Eileen always says - SLOW is best !
Hope it works for you.
Dave
I also find that at these lower dosages, that there is simply some fluctuation to be expected in terms of one's needed dosage.
I was doing ok at just 1.75mg for some months earlier this year (that was my lowest dosage over my 3-1/2 years with pmr), but perhaps due to random and seasonal changes in my activities and lifestyle, I had to work my way up to 7mg in order to control inflammation (bursitis) about my shoulder and upper arm areas. So a few months along and I have now comfortably reduced back down to 3mg, with the usual low-level fatigue and skeletal symptoms along the way. I suspect that over the next six months I may be able to get near zero this year, as each year has gone a little better than the previous one.
So, just don't reduce too fast from any weeks-long increase in dosage. Also, you might consider "spiking" any sudden uptick in symptoms with a short-term, good-step higher dose as some have advocated as a way to control typical periodic flaring of symptoms.
I take my small dosage of pred every evening these days, so wake to fewer symptoms. So I prefer to get my preferred and well-tolerated exercise in the morning, while my energy is high and my dosage from the previous evening is still working effectively. I have no problem making it the full 24 hours to the next evening, though I may begin to feel symptoms slowly returning by that time, which informs me immediately as to whether my current dosage level is sufficiently effective. So that is how I judge where any dosage adjustment needs to be made, without having any fluctuation of symptoms much effecting the sleep hours and work hours of each day.
If you are finding the symptoms are returning at a specific dose - the chances are you have got to the dose you are looking for: the lowest dose that manages the symptoms as well as the starting dose did. However slowly you go, whatever tricks are suggested, you won't get past that hurdle. Or at least, not yet.
As has already been mentioned - this is also the point where your adrenal glands need to achieve a staged return to work. 5mg is a low dose, the side effects are minimal. One top rheumy likes to keep his patients at 5mg for anything up to9 months - just to let their body catch up.
If you have symptoms - don't force it. There is no virtue in "managing" just to say you are on 1/2mg less - you run the risk of the dripping tap of inflammation filling the bucket and overflowing.
If it were me, I'd be back at 5mg and taking a rest from the fiddle and worry of reducing for atleast 2 or 3 months. Then it'll be winter - not a good time to reduce
I got pmr last August, was bedridden by late September when I started the prednisone. 20 then 15 then 12.5, 10, 9, 8, 7, 6, flared, then back up to 7, and 6 again. Started 5 on dead slow method. As soon as I got to the "6 new, 1 old" I started to have pain and stiffness in my hips and legs. So I stayed at 5 mg. for another 10 days. And I'm feeling better. So my question is do I keep at 5 mg. (I'm feeling better again) for awhile...if so how long, do you think? Or is it ok to resume the nearly dead but this time at 4.5 mg? I know it's guesswork--I'm just trying to figure out what to do from more experienced people (even though we are all different). My doc keeps saying it usually goes away in a year but that seems to be the exception....
that is part of my question too: when you complete one cycle of the dead slow method and you feel ok, do you start right in in the next reduction or do you stay there for 30 days before continuing with the next cycle? I stayed at 10 days, because my flare was gone, thus I thought it was ok to go to the next cycle. thanks
Hi Twopies,
it seems to get tricky when you get to around 4mg!! I have had PMR for 4 1/2 years and managed to get to 4mg using the DSNS method (actually even slower than that at times). I was at 4mg for over 6 months and feeling good so decided to try 3.5. THAT DID NOT WORK!! I got to week 3 and it started. I let it go too long not knowing if it was withdrawal or aflare and by the time I decided to increase I ended up trying 5mg, 7mg, 10mg and finally hit it with 15mg where I stayed for about 3 days till the symptoms were basically back to where they were at 4mg. At first I was so upset because I had visions of the long road back but I managed over a couple of weeks to drop back to 5mg and after a failed attempt at 4mg I decided it was 5mg that worked for me. I am still there after 3 months and because I will be doing some travelling soon have decided to stay at 5mg till I settle down again.
My goal is not to get to zero, although that would be awesome, but to be at the lowest dose that will allow me to do the things I want to do (mostly).
I hope you get to your "best" dose soon. As frustrating as PMR is, patience is the key,
Hugs,
Diana🌸
That's the problem, isn't it, Dave? Trying to figure out how to keep the "it" at bay! I'm trying to figure out what "stabilize" actually means for my body. Like everyone else, I guess, I want to get off the pred asap because of the side effects and the toll it's taken on my body...plus I'm not a patient person. So when you go slow, how slow is that, I wonder? It sounds like you are using a sensible approach...thanks for sharing!
My own experience is just my own experience, but I would say that fall and winter have mre often been the months when I was able to make bigger reductions to new lows in dosage.
An exception was my very first year with pred, when seasonal forest fire smoke curtailed my usual exercise regimen at the same time that I was reducing from 10mg down to 5mg. That winter did not go so well, and I was feeble and miserable as I followed my rheumi's dosage regimen prescription.
But each year since, it has been the autumn months when I noticed that I could again reduce in sizable steps at more frequent intervals.
So just to say that we are each in the best position to monitor and regulate our symptoms and dosage requirement. Not to say that an average of patient outcomes won't be the best predictor of what course that one's dosage requirement will follow, but that data on this is perhaps not from such well-controlled studies as we might prefer.
As Eileen mentioned, it's important not to get too wrapped up in one's pred dosage level when you get down to 5mg. The worst of any pred side-effects is certainly behind you at this dosage (as your body has returned to regulating it's cortisol), and you don't want any crippling pmr symptoms to put a damper on your healthy activity and exercise levels. Time to get back to living an un-hindered life!
Thank you so much...kinda overwhelmed by the responses...thought I was gonna sail through this. Evidently I need to stay at 5 mg for awhile...I was soooo hoping I could start right in at 4.5...I just feel so lost at trying to manage this thing. My doc has given me free reign to do whatever I need to do (which is good) but like I said, I've only met one other person who has it (she lives in another part of the country) so it's a struggle...as I'm sure all of you know and feel. Thanks for your help.
I have recently posted stuff elsewhere. A new retrospective study found that 19% of patients were off pred in 1 year, 37% by 2 years, 50% at 5 years - and 42% of patients were still on pred after 10 years albeit at a low dose below 5mg. An Italian study on methotrexate found at follow-up that one third of patients still required some pred at 6 years, wether or not they had been on methotrexate.
So where on earth they get this idea that PMR lasts 2 years from is beyond me.
I suspect too that where you live has a bearing - wet, cold and windy weather is not good for PMR!
Give it a month - and try half a mg again - and be watchful. It may work OK and you will get lower like you want to do. But this really is the point you have to slow down - not just because of the PMR.
And my mantras: it isn't slow if it works and everyone is different!!
It's not just medicine, Eileen.
I remember Delia Smith saying the same thing about cooking and Monty Don about gardening. Someone, somewhere pontificates, is not challenged or corrected and, lo and behold, it's received wisdom and quoted for years to come.
Yes, I read that on this forum, too...my doc, like I guess a lot of them, says I should expect to be off pred in one year. He says "that's how long it usually takes pmr to resolve itself." The fantasy continues....
Starting back up to 5 tomorrow...sigh. Thanks, everyone, for consoling me.
It is feeling good that matters - not the numbers...
Hi Twopies, every individual PMR case and person is different. You only can determine your correct dosage, be happy that you have a doctor that understand that, many of do not. Listen to your body, it will tell you too much if you are exercising, slow down, take a rest. Do not reduce if you are having any PMR pain. But exercise daily with the goal of increasing a little bit at a time. Stay on the dose where you are comfortable and can exercise PMR pain free before reducing to the next level. Good luck on your journey, I doing mine with a smile on my face! 🙂
I'm up for general advice from anyone here on this topic, and Eileen you have been my pillar of strength on nearly every discussion I follow, bless you, and you partly know my history already. This is quite overwhelming but SO helpful. I've only been on pred (50mg) for 9 weeks now, for both PRM and GCA, and my rheumy has just started to decrease. He has dropped me to 37.5mg for two weeks, then 35, 30 each for two weeks, then 25 for a month. This will take approx 3 months, Then review. Eileen had said in a previous discussion that this was an odd reduction plan and quite large increments at a time....and from this discussion that is certainly the case. It's only been a week on 37.5, yes I'm handling it, (somewhat), as I have back disc issues I'm also babysitting.I had noticed in previous discussions reference to DSNS and wondered what that meant...now I know, but the reductions here are minor to what he has me doing, I just hope I can handle his plan. if I can't and I'm on say 30 or even the 25, and I find the pain returns to a level of intolerance, should I just increase up an increment, and if so for how long? For example, on 30, need to increase to 35...how long should I take 35 before I increase to 37.5 if the 35 is too low? Just a few days, or should one day at 35, the next at 37.5 and then back to 50 or stay a few days on each? The lowest dose tablet on my script is a 5 mg so I cut that in half to give me 2.5mg. I could increase more slowly between the 37.5 and 50 if I wanted to. On saying all this...I'm hoping I won't need to increase but just in case...knowledge is power I always say.