I would like to hear from people who have either gotten off of pred or are currently on very low doses-do you ever really feel "normal" again?
NORMAL??? what’s normal?
I’ve not felt normal in months!
hoping to feel it one day, but God only knows when that might be!!
if you should happen upon it,(normal) please tell me where it is and how to get there!
My third year with PMR. I would say that after getting down to 6mg and below for the most part I feel as myself again. I dont have any restrictions, except that muscle strength is not at the same level as before, but I am working on it. I was as low as 3mg, but PMR became active again and I am currently on 5mg. “Normal” is as much mental state as it is actual condition due to PMR. Not to become too philosophical, but one has to compromise and adjust to new normal mentally and physically and accept new reality. As much as you may long for old yourself, it will be several years ( ~6 is the average) before PMR goes in remission and we will age in a mean time, which will bring new normal anyway. That is how I look at it…
You are unlikely to hear from people who are off pred here - they are almost all off getting on with living life. I have lost contact with quite a few people who have got off pred while here and then disappeared over the horizon. However, Lodger on here has been in remission for several years after having had GCA and BettyE after PMR. There are quite a few people involved in the charities who are no longer taking pred, they just don’t use the forums any more.
There is a thread on the forum with posts from people who have got to zero pred but most of them were posted immediately after they got there so there is not a lot of detail about how they feel.
I can’t say I feel “not normal” even though I am still on pred - and currently at 15mg because of a flare. I have been well below 10mg and felt fine. It is very difficult to assess whether you feel normal whether at a low dose or off pred because with the best will in the world we are a lot older than when PMR appeared and have lost a lot of muscle bulk and fitness as a result. Once you are over 65 how you feel can change anyway and other medical conditions turn up - some of my loss of fitness is due to atrial fibrillation and to injury and they were more the reasons I gave up skiing, I skied for years with PMR, untreated and treated.
As Nick says - a great deal is attitude of mind. I don’t really consider myself “ill”, I have a “new normal”, one I would have reached at some point anyway so I compromise. PMR doesn’t stop me doing much, other things have contributed to that much more. I still travel, still do charity work, still do some work - what else is there?
I’m not off pred - I’m currently on 8mg having gradually reduced from 15mg - and I feel normal most of the time! I’m able to go about my business without PMR or pred interfering (but having said that, I had to cancel a night out on Saturday because I was exhausted - that was after an exceptionally busy week, so maybe that was ‘normal’ too!).
Hi Carnut
I have been off preds now for approx 18 months and yes i do feel normal in comparison to my pred days. I suffered horrendous side effects which made me determined to get of pred. It wasn’t plain sailing i went through post pred withdrawal symptoms and pain. It took almost 10 months to a year of dropping 1mg a month from my initial 15mg…when getting to lower doses i was going up and down with doses because pain came back. I was pretty fed up of the roller coaster of the up and down scenario that i decided i would get of them pain or no pain because i would rather the pain than the awful side effects of which i had many. I would say at this juncture this was my experience and my experience alone, ‘we are all different’ is the common phrase used on the forum. To date i am ‘normal’ as opposed to definitely not ‘normal’ on pred even my personality changed, i wasn’t me. I do have Osteoarthritis and Post Herpatic Neuralgia from shingles which i had when on pred due to compromised immune system caused by preds. Pain from both coditions are well managed. I am a happy chappy today. I am still on the forum because i would like to be of some help and give advice to those who are going through the bumpy pred journey especially newcomers who are going through the pred experience…i have been honest in my reply…and would stress again this was my experience and we are all different in our pred journey…kind thoughts your way Carnut.
Short answer… Yes.
This is part of my reply to another newly diagnosed patient.
“My pain was at first diagnosed as OA and, as my GP said, that was forgiveable looking at my knobbly hands. Luckily I mentioned that I had recently lost weight and as I only weigh under 8.5 stone, that was not intentional. That was the clincher and, having taken blood for ESR and CRP ( both raised ), I was started on Prednisolone immediately and the symptoms disappeared as thought by magic in 4 hours. Getting down to zero Pred. took three years and I was lucky that My GP trusted me to adjust my own dose ( under supervision… I kept a diary ) The slow reduction method recommended by Eileen worked for me.”
The only downside is that after three years in remission PMR returned but again I eventually I recovered and that was five years ago. I stay on here in the hope of being able to offer encouragement."
There were days when I cursed the side effects of Prednisolone but
as it kept me more or less pain free I learned to live with it.
Of course I’m a lot older than when I first had PMR in 1999 bu I would say that, making allowances for that, I am pretty well back to normal. However, I would say that it took about 18 months after stopping steroids for my body to adjust. It didn’t happen overnight but I found that little by little my muscles strengthened and my stamina returned and life picked up.
Hard to do but try to be patient. ( Anyone who knows me would laugh to read ME giving anyone that advice but it’s kindly meant.
I have been off predisone for 1 year. I was on predisone for 1 1/2 years. I have no pmr systems since coming off. I consider myself very lucky. I pray for it to never come back. I never thought I would feel normal again but happy to say I am me again. So there is a light at the end of this tunnel. I wish you all luck in this process, I know how hard it is. Don’t give up.
Yes Canut, you probably will feel as good as you did before depending on your baseline overall health. I have had PMR twice (ten years apart) and am one of the lucky ones as I read these posts since it went into remission each time after about 24 to 28 months when adding in the time between symptoms and treatment . I am a male, 72 and have no other medical issues other than moderate hypertension. My prednisone treatment for the last relapse ended last June, and I generally feel good, considering my body is still that of a 72 year old man. That said, I am more aware of the difference between being “cured” (as I used to think) or being in what I guess we can call “remission”. It is why I stay on this Forum to learn as much as I can and share my experiences with those just entering the journey.
mary…your kindness never ceases to amaze me!
hope your day is great, and I hope to one day be as fortunate as you and be off prednisone all together as my side effects have been worse (or as bad) as the pmr!
KEEP ON POSTING!! 
thank you BettyE…it’s so enlightening to hear of others journeys…the one word that keeps coming up is “PATIENCE”…something that I thought I had TONS of till pmr!!
I have been off of pred for several months, after 2 1/2 years of PMR. I basically feel “normal” although have residual side effects such as easy bruising, thin skin, cut and bleed easily and have to be careful to avoid situations that would cause those effects.
Hi lynda62707
You will get there, but do what rheumy advises you. I had a great rheumy who advised me and was with me all the way when tapering and when i initially came off pred. Take your time don’t hurry the tapering when you get to that stage of your pred/pmr journey…remember more haste less speed!! Chin up there is a light at the end of the tunnel…happy thoughts…good wishes and keep swimming towards that light…
Again, thanks to you all for your insight.
As has been said, we are all different. I will be 70 in January and before this nonsense was doing great other than having a back operation a couple of years ago from which I fully recovered. That being said…I consider the stress from that operation and the long recovery as the probable trigger for my PMR.
Unlike some of you, I am having no fatigue at all, just pain, mostly in lower extremities. I just went back up to 20mg and am feeling much better. I am only a few months into taking Medrol and have been up and down a couple of times because my Rheumy will not agree (yet) to allowing a slower taper. I am to see him soon and we shall see!
Hi Carnut
You mentioned you thought an operation was the trigger for your PMR…4 months before my pred diagnosis i had a foot operation. I was healing well and doing fine. I have read somewhere that the anaesthetic can do adverse things to our muscles, so who knows that may well have been the triggger for yours and mine PMR…i wish you well with your slow taper if rheumy agrees…
So refreshing to hear of a good outcome! thanks for sharing!
Thanks for all your input! please keep “plugged” in!
I consider myself a strong person, both emotionally and physically. But I’ll tell you.,
having that back op was the scariest thing I
have ever undergone, and I was in the military. I an pretty much convinced that was the beginning of this journey.
Hi Carnut,
Im on pred, and I hate what it has done to me, the side effects are worst than the PMR I have now been diagnosed with RA. I am on 8mgs and I scale down the dosage by 1mg every week. And yes I rather the pain than the awful side effects which have ruined my life, at what mg did your side effects ease up ?
kind regards
Faye
Don’t forget that the return of adrenal function will be the limiting factor for speed of reduction from here on. 1mg a week will be very fast so be careful as you get even ower.