Dead stop nearly slow--need help please
Posted , 14 users are following.
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!
0 likes, 31 replies
snapperblue Twopies
Posted
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.
Twopies snapperblue
Posted
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
EileenH Twopies
Posted
So where on earth they get this idea that PMR lasts 2 years from is beyond me.
BettyE EileenH
Posted
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.
Twopies EileenH
Posted
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....
lorna37853 EileenH
Posted
Dave-California Twopies
Posted
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
Twopies Dave-California
Posted
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!
dan38655 Dave-California
Posted
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!
dan38655 Twopies
Posted
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.
EileenH Twopies
Posted
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
dan38655 EileenH
Posted
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.
Twopies EileenH
Posted
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.
EileenH dan38655
Posted
EileenH Twopies
Posted
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!!
Twopies EileenH
Posted
EileenH Twopies
Posted
Michdonn Twopies
Posted
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! 🙂
Reeceregan Michdonn
Posted
You're uplifting and inspiring. Keep inspiring us, we need you!💪💪💪
Michdonn Reeceregan
Posted
Thanks Reeceregan, I was down back in April and May, but EileenH and one other person got me going. I put on my smile set some goals and started moving forward. Still having a problem with my balance, but getting better, this is a problem work as a ski instructor in the winter. I got myself a BOSU ball to help improve my balance hope to be back on my bicycle for my 80 th birthday. So yes I am smiling. Look forward to a great winter of skiing. 🙂
Reeceregan Michdonn
Posted
You're 80?? And a ski instructor?? I'm crawling back into my hole... and finding a way to be you 😂😂. Yes Eileen is a marvellous pick me up as well, and I have to say I truly want to focus on anything positive, that gives hope, that can help me understand the journey ahead as I already know from my short experience with PMR and GCA that I have one hell,of a battle ahead of me. And it's been a shock to this normally fit and active 62 y.o. But I'm a fighter and I will not cave in to this. I have a lot of retirement plans I don't want to give up...but I will modify them f I have to.
Michdonn Reeceregan
Posted
Reeceregan, I will be 80 in less than a month. Last year on Predinisone I taught 4-6 days a week and skied 5-7. With a smile on my face, believe me, to me this is not a battle or a fight, it is a journey. My wife is a three time cancer survivor, cancer is a journey and I think of PMR the same way. It not something to win or lose, it a journey and I not going to do mine journey any other way, but positive with a smile. 🙂
sandy08116 EileenH
Posted
That's what I was told too, Eileen. I stick to the rheumy's regimen - dropping one mgm per month till down to 6, then reassess. Give the body time to readjust.
Anhaga Michdonn
Posted
Yes, Michdonn, it is a journey. You really can't "fight" ilness of any sort, especially not the chronic ones which take over our lives. Bend with the wind like the grass or a sapling, don't fight or you'll risk being broken.
Michdonn Anhaga
Posted
I agree! 🙂