When you respond well to Prednisone, exactly how good are you?

[ARNEMRRM]

I am wondering what limitations I might have once I achieve my maximum steroid benefit, and wondering how many months on Prednisone it might take to get there. Will I be able to fully resume my former life activities or should I anticipate some degree of compromise, and if so, in what way? If you had to put a % age on your degree of resumption of your former life quality, what might that be?

[jwb43]

I know this is not the answer you want to hear but I Believe everybody responds differently and everybody’s pain threshold is different. So you will need to determine for yourself by starting slow and trying to see what you can do without overdoing it.

[Hindags]

Great question. I think that is a question we all have. Do you happen to know where they sell crystal balls?

I started at 20 last Dec and am at 9 now. I'm 76 and still work, part time, as a clinical psychologist. I don't work quite as many hours as I did before PMR. I hope I can continue to keep working but how my body will react as I continue to taper is just an unknown. Will the horrible fatigue set in? And brain fog?

One day at a time is the only way I know how to do this. At the beginning I was fearful about travel, making plans. Now I not so much.

But as PMRPro has posted, men seem to have an easier time with PMR than women, in general. I hope yours is one of the easier journeys.

[-LJ-]

Personally, my limitations are few. I started one year ago with 20..now down to 5.5 and my life has changed very little. Yes, maybe I cut my activities a little short in the day to go home and relax a little sooner than before. Yes, maybe I relax in a hot bath a little longer and at strange hours (not so much recently, but early on). Yes, I have a new normal getting up at 2-3 am or Meds. But, really, I have friends who don't even know about the PMR, and other than the obvious weight gain....life is pretty much the same. I forget I have PMR during the day, unless I get little reminders from heavy lifting etc. Luckily I don't forget at Med time!! This doesn't have to define you, just take it day by day, do what you have to do to be comfortable (sometimes stay on your dose a week or two longer). Most of all...stay tuned here! The information is invaluable! Hopefully your journey will be as easy as mine has been.

[Rugger]

I am sure the 'experts' amongst us will be along soon, but in my experience, a huge degree of benefit came within days of the first dose of steroids. I've read that in some people it came within hours. I'm equating this to the initial relief from pain and not to 100% recovery, whatever and whenever that will be, if ever! My muscles remained intolerant of anything more than gentle use for many months. Lifting something weighing 4 pounds felt like 8 pounds and still can do at times, almost 18 months on. My legs felt much weaker than before diagnosis and walking up even a gentle slope felt like a hill. That has improved, probably up to 75%, if you want percentages!

As jwb43 says, we are all different and you will find out these answers by listening to your body and treating it gently. It will let you know what you can do in those cardio sessions and in your daily life. Our muscles take longer to recover from use than before. Pacing and resting to let your body heal is the key, while using your muscles to their own tolerance.

Best wishes.

[Hidden in reply to Rugger]

Thank you Rugger, you have summed it up nicely, and that is how I feel after 4years

now just down to 9mg from 20. Now at 81 yrs having only given up 4 yrs ago my scuba diving and when I try to pick up my diving cylinders now they seem stuck to the floor! I still all the time you are moving you are not D... and all the time you are swimming you are not Drowning, I tell myself with my swimming, not the distance but the rhythm of the stroke and dreaming of ,it could be a Dive! John - and thanks to all those fellow sufferers of this column. Bless them.

[sondya]

Prednisone has lived up to its reputation as a miracle drug. Worked for me, but shattered immune system is vulnerable and coming off the drug affects people in different ways.

My straight hair is now curly!

[Pat46 in reply to sondya]

My hair is now curly as well but at least it's now getting thicker, it was terribly thin when I was on the higher dost but now I'm down to 7.5 mg things a definitely better. I started on 20 mg in March 2016, I have GCA, most days I forget I have it and then suddenly I'm totally drained - it always takes me by surprise until I realise what's happening The main thing is I still have my eyesight so I'm very thankful for prednisolone, even with it's drawbacks.

[DorsetLady PMRGCAuk volunteer]

Hi,

One thing you have to remember, and you are probably not the only medical person not to appreciate it, the Pred is only controlling the inflammation caused by the marauding cytokines etc, it is doing absolutely nothing for the underlying PMR itself - nothing does. It’s only treating the effect not the cause.

As you know you are given a higher amount of Pred at the outset to get a grip of the built-up inflammation, and in that you feel really good, all that additional chemical cortisol coursing through your body.

After a few weeks your body gets used to that level of cortisol and you feel slightly less euphoric and full of energy, a new normality surfaces. Then the harder part comes, you have to reduce slowly to get to the level of Pred that not only keeps any residual inflammation under control, but also attacks the new batch of cytokines produced every day.

Meanwhile the PMR is still there, compromising your immune system, slowing down your body’s normal recovery/reactions times.

Most people find they can return to good lifestyle - certainly 75% - but as I said to your earlier post you need to learn to pace yourself. You cannot go through life at 100% as you did before, and many find that very difficult to acknowledge - it’s not in their nature - and that’s probably why we succumbed in the first place.

Compare it to driving a car, you coast along at 55mph not dash along at 70mph.

You can make the journey easier or more difficult for yourself. If you do too much, you’ll suffer for it the next day. If you’re going on a trip, plan it more carefully than before, build in times to stop and rest. And learn to say no sometimes!

As I say to newbies - you don’t have to stop living, just do it in the slow lane for a while.

[BonnyQuine in reply to DorsetLady]

Me = GCA since Nov 2016. Started on 40mg Pred; now 9.5.

I agree w everything DL has said except that, personally, I never had any stage of feeling "euphoric and full of energy". I just felt totally wiped out for months. Sort of cocooned in a little bubble, away from the world and all its frenetic preoccupations. Since then I've gradually crept from the hard shoulder into the slow lane. Have just rejoined my old choir after almost a year, but still don't feel up to anything energetic. Have remained positive all the same, and know I'll 'get there'. Remember the tortoise & the hare?

[SheffieldJane]

In my experience, once the adjustment to Prednisalone has been made, you feel better than you are, because the inflammation is under control. It is a great temptation to try to resume your normal activities. It is a great shock therefore when you find yourself floored after a day of particularly strenuous activity, possibly in considerable pain around the neck, arms and legs and back. The other surprise is that your resistance to stress is much diminished and you can find yourself feeling quite ill following a relatively minor upset, or even a pleasant social event . It can make you become quite insular. I have found that as I gradually taper down from Prednisalone, it is helpful to gradually taper up with activities. Pacing is the key word. Plenty of rest breaks in between activities. I have also found it useful to take a couple of extra mgs of Pred. If there is something on the horizon that I simply can't get out of, or a journey I must make, or medical/ dental treatment I have to have. This hasn't seemed to interfere with my reduction programme.

I hope this is of some use. Most of us learn the hard way at least once. I think long term steroid use makes you feel generally seedy and lacking in energy, even when the underlying disease may be going into remission. So you don't feel great until you are practically off the meds and in remission, even then you have to build up your fitness levels for about a year. Not to mention the state your Adrenal Glands may be in.

Patience is the watchword. In my personal view something in our lives was causing unbearable stress before the onset of PMR/ GCA, bereavement, caring responsibilities, over work. I have found this to be a thoughtful time during which a lot has become clear to me about my life.

[Sandy1947 in reply to SheffieldJane]

Brilliant post. I agree...PMR is a blessing and a curse. It brought me from the very fast lane to the slow, contemplative, restful lane. It forced me to retire from a stressful business. It helped me get off a frenetic pace socially. When I try to go back to my old ways PMR becomes a punishing teacher.

New normal is really not so bad! Where else would you have such a supportive group as people on this forum?

[1Purplecrow in reply to SheffieldJane]

SheffieldJane, excellent description of the way PMR impacts life! Thanks J

[ARNEMRRM]

so many very thoughtful posts....thank you so much

[Klah]

I think the others have already offered great insights into what you might expect. I am coming up on 4 years of PMR. Initially the prednisone really “picked me up” after about 3 months of fatigue, pain, etc. after that I moved quickly into a “one day on, one day off” routine which I followed u til this past year. One activity a day. I was playing tennis, golf, yoga...but every other day...then a nap (sound sleep!). Now, when I walk my dog I can remember only being able to walk to certain “sign posts”, then would have to turn around. Now I can walk 4times that far... but I still must watch out for a flare...stressful event, emotional event, not enough sleep, etc. Hope this helps😊

[PMRpro Ambassador]

How long is a piece of string? No answer I'm afraid - everyone is different.

Some people become pain-free on 15mg and are able to reduce steadily to a low dose without problems. Others are never pain-free or need up to 25mg and then have repeated flares as they try to reduce meaning they have to stay at a higher dose for longer. Apart from any other consideration, the bioavailability of pred varies from 50% to 90% - not the fixed 70% that is so often quoted. So you can envisage what that can do for the 50% patient whose doctor is hell-bent on reducing them to a low dose without thinking about their personal symptoms.

Normally it is suggested the patient remain at the starting dose until the symptoms are as good as they are going to get and the markers (if that applies) have fallen as low as they are going to go and are stable. Generally 4 to 6 weeks may be enough for that - unless the patients has really stubborn bursitis which can take months to fade. Then you titrate your dose: reduce SLOWLY - both temporally and in terms of decrements - to find the lowest dose that gives the same result as the starting dose did. Once you establish that you rest there and try a small drop every so often to see if you can now get lower. Not scientifically proven, but the activity of the underlying autimmune disorder seems to fade over time. But it also seems to cycle a bit - on a down phase you may get to a lower dose and then it wakes up again and you flare and need more pred again. But the primary cause of flares is reducing too fast or too far.

Pred only manages the inflammation - it does nothing to the underlying cause of the symptoms. That chugs away in the background and attacks your body tissues (the autoimmune aspect) - leaving your muscles intolerant of acute exercise. If you have been in training before PMR then you MAY be able to continue a level of exercise that most of us just dream about. But it will probably be at 70% of your max at most - or you will suffer severe DOMS (delayed onset muscle soreness) and your muscles are unable to repair themselves as normal so it lasts much longer.

It is always a good idea to start with a very low level and increase it VERY slowly on not more than alternate days until you find the level that leaves you a bit sore next day - and drop back to the previous level for a time before trying to up it a bit again. You will do more if you break up exercise into smaller sessions - depending on what it is. Walk 5 mins, rest 5 mins - rinse and repeat with a low total at first until you see how you respond. I skied with PMR for 5 or 6 years - but every season I had to start with 3 short runs with rests on the chair/gondola and build up from there. If I tried to do more than my body would allow I could find myself stranded 2/3 of the way down the piste! Not a good move! After a couple of weeks doing that on alternate days I could graduate - but not to a long run, just to more short ones. It was a long time until I could manage a long run without the rests even though the length was only the same as 2 short ones. Obviously with skiing you have a limited season and your muscles have forgotten what they were doing last season by the start of next - but something similar applies for everything and as long as you keep doing it you can also keep building up how much you do.

Like others I still have sore muscle problems if I overdo it - my hands are sore and biceps pinching a bit after packing up our camper on Friday. I cannot carry a heavy bag or box without knowing about it. So I adapt what I do to avoid pain - living with the gorilla means it is a good idea not to tramp about waking it up...

There is a forum on patient.info where we have a few members who have continued fairly high level sport - but I think all of them say about 70% of what they did before. I might be wrong - come and ask them!

patient.info/forums/discuss...

And gorillas live here:

healthunlocked.com/pmrgcauk......

[Klah in reply to PMRpro]

Well you sure summed it up for me too! At the start of PMR I was an active person, reasonably fit...living(like you) in a town of fit people. I have floundered through also. You have described beautifully the ups and downs of this PMR. You are right, we are all different and it is difficult to compare activities on this forum...and the speed with which we do them. I have re-stabilized from a flare by bumping up 1-2m for 3 days and doing NOTHING For two days...breakfast on the couch, etc. kudos to those of you who are still working...especially the teachers! PMRpro is right...rest, rest, rest....even for 10 minutes!

[Cobnut]

I agree with all that has been said but would like to add that as someone diagnosed with GCA over two years ago I started on 40mg of pred and have had two flares since then and have gone back to 35mg. I am now on 6.5 and feeling good. My experiences on high doses are awful. I had the lot - brain fog, fatigue, blurry eyes and I was bi-polar. My family never knew what mood I was going to be in. Then you get the fat start to appear and your hair goes mad. However as I have found out people diagnosed with PMR start at lower doses and almost get total relief from pain. Then they start to decrease and it changes and little flare ups happen. One thing is plain. You must rest and give yourself time. I am in the habit of a nap most days and try to avoid having busy days two days running. Stress will make it worse but you must keep moving. Now I am down to a low dose I am experiencing lots of aches and pains and my GP says I have PMR to go with the diabetes and glaucoma both steroid induced. I know that my GCA has not gone but is hopefully under control and I know what symptoms to watch for. So stay positive, take care and keep writing to these helpful ladies. By the way - I can now walk l.5 miles with some hills. That is wonderful.

[Pat46 in reply to Cobnut]

I just submitted a post and said I started on 20 mg - no I didn't - I started on 60 mg and had all the side effects but as I said I still have my eyesight and that's what matters.

[Klah in reply to Cobnut]

Ha! Hooray! 1.5 hilly miles....that ole, strong You is still in there😊...now go rest....

[May10]

Most people on this site will tell you that everyone is different. This is so true. Before PMR I played golf 3 times a week, was in the league team and went to play in open days at other clubs. Also my husband and I cruised two or three times a year. April 2016 when on a cruise I had pains in my arms then shoulders and buttocks. I couldn't dress myself or get out of bed. On returning home my GP diagnosed PMR and put me on Pred. 20mg. That was the start of my problems

Since starting on Pred I lost the pain but gained numb and tingly hands breathlessness and such fatigue that I feel as if someone is walking behind me pulling me back. Before PMR I had Gastritis Since using Pred it is a lot worse. .No way could I play golf....no matter how much I miss it. I am down to 3.5 mg but feel no better. I long for the time when I feel "energised" Sorry for the moan. I only point out there is no one solution!

[ARNEMRRM in reply to May10]

I hope you feel better soon. I get it. I went into my illness with a 7.2 handicap index and now I cant hit a ball on the range. But Im alive and there are other things I can do

[May10 in reply to ARNEMRRM]

So very true. I had a fright with my husband's health this year so I know it is good to be alive!

[Klah in reply to ARNEMRRM]

I know how discouraging that is. My male friend could not lift his arms to get his shirt off...had PMR For 18 month (!!!) then went back to playing competitive tennis nationwide...5.0 level😊 There is the possibility of recovery.

[ARNEMRRM in reply to Klah]

Well that is certainly encouraging...thank you for sharing this. Lucky guy.

[enan-illuc]

Hi ARNEMRRM,

I started out at 60 mg of Prednisone for GCA and PMR and was as low as 13.5 until a Flare took me back to 20mg. I have had a few Flares when I dropped too fast or pushed too hard. For me there is not a consistent 'percentage' of improvement on a daily basis, it varies from day to day. If I have a day were I do a lot, the next day is almost always bad, you have to pace yourself. Stress seems to have an effect on me also were it did not before. I believe we just have to adapt to our own situation/illness and take it day by day. This forum has been a great asset to me and has taught me a lot about this illness. The people here are great...welcome to the club.

Enan

[Lyn_seaside]

As so many others have said, everyone is different. But I can give you something positive.

I started on 15mg and went from feeling at least 100 (I was 58) to being my usual self . The pred took effect within a miraculous five hours. I run my own very busy business and walk miles with the dog and I was able to resume my normal life. I tapered slowly, came off for six months, stiffened up a bit, went back on to 5mg and then came off again. Have now been off Pred for six months and I'm fine. I know it's lurking, I wake up with a slightly stiff neck and if I party till 2 in the morning too often I feel a slight stiffness. So I have an early night and I'm fine again. I gained about half a stone with the Pred but otherwise never noticed I was taking it. For me, PMR was an inconvenience and scary, in that it might not remain manageable, but not life-changing.

I am very well aware that it's not like this for everyone but I can only speak as I find!

Good luck with your journey!

[HeronNS]

Interested to read how others have found their physical fitness changes. I responded really well to pred and did everything I'd done before without difficulty through to about 7. Then deathly fatigue hit me. Since then, going on for nearly two years, I've noted some ups and downs in my ability, and have learned to be careful to balance activity and rest. My tolerance of stress has not increased, or maybe I'm just more aware, and I feel my general health has declined. I'm not as strong as I was, for the past couple of months I've had quite serious back pain off and on (osteoarthritis ), and a stupid move on my part brought on my first, fortunately minor and hopefully only, flare. So from thinking about six months ago I was heading into remission, right now I feel pretty bad, but the PMR niggles are controlled. I'm inclined to blame pred for my loss of strength as I was able to keep active to a reasonable degree through the undiagnosed year and beyond. And, as is often pointed out, we are all aging as we travel the pmr/pred road.

[Marilyn1959]

Hi Doc and welcome to this World of PMR!

In answer to your question and post - when I was diagnosed (June 2017) my Rheumy asked me report, in percentage terms, how close to my norm (pre PMR symptoms) the pred took me after just three days on 15mgs. He stressed that I only should only be satisfied with 90% if the pred was doing its job. I fortunately had the pred 'miracle' that lasted about three months after just two doses of meds! Such was my euphoria I told my Rheumy that he must be Jesus reincarnated as he had 'healed' me. My Rheumy was quick to point out that it was pred (the wonder drug) doing the work not him!

Unfortunately despite significantly improved blood results, more recently (four months on) some symptoms are returning even when I am taking 15mgs, my starting dose. I am guessing I may have an infection that I don't know about yet!!!!! It only takes one thing to upset the apple cart!

So, whilst 90% optimum is the goal (set by my Rheumy) the nature of this disease means the journey towards can fluctuate quite dramatically - this, I believe, is the toughest pill to swallow as it makes planning ahead extremely difficult. Sometimes it is day by day or even hour by hour and, as a result, it is oh sooooooo easy to over do it on the good days so as to make the most of the time when you 'can' do!!!

I have now resigned myself to a long journey, on a bit of a bumpy road, for I don't know how long. What I do know is it won't kill me and, providing nothing else gets me in the meantime, there will be an end to it where 90% optimum becomes consistently the norm.

Meanwhile, I am learning to go with the flow in what DorsetLady calls the slow lane. Well slowER lane - haven't quite cracked pacing yet!!!!!

Wishing you well on your journey.