PMR and Excersize - Experiment in Progress

It's great to hear that your reductions aren't causing flare-up of symptoms.  You are nearing the point where the body starts contributing to the cortisol equillibrium regulation, so will be interesting to see how that goes, i.e. will the same degree of monthly taper be possible as you pass through this "transition".

I was just getting used to 2mg/day but have reduced further this past week to just 1.5mg/day.  I had to "boost" my dosage on a couple of days, after eating restaurant food, but the fatigue that I was dealing with over the past week is now about over already.  Like you, I am exercising a LOT, with almost daily 2+ hour bike rides and daily pull-ups that are finally comfortable for me to do, just like when I was 20! 

I got what I think will be my final prescription of 1mg pred tablets last month from my rheumy, so may never have to re-visit and explain why I didn't begin taking the Plaquenil he had also prescribed.

I look forward to your next update.

I know that I am approaching "physiological" dose that may be a challenge. The plan is to come to some lower level ( close to 5mg) and park there for longer time and let the PMR burn out. Time will tell.

I don't exercise as much as you do for sure since I am still not completely retired  and work 5-10 hours a day  from home. I have found that 3-4 hours of decent exercise keeps me in adequate shape and it does not take all my free time.  The rest of the activity time is "necessary activity" -  walking a dog ( 4-6Km/day) and work in the garden. But everything counts.

I have regain muscle endurance back ( almost everything), but I still have to work on muscle strength. I see that you are doing pull-ups... Can't do more then 1-2... and it hurts, so I always delay it for later. 

On a different note, I was looking at "cross fit" exercise. I know it may sound crazy, but I think their philosophy of "basic functional moves" is what I find interesting.  I am not thinking about doing it at the intensity and speed they do, but those basic moves can be done in slow motion. They use all major muscle groups in the body.  What are your thoughts on this?

correction... the above should read "I have found that 3-4 hours per week of decent exercise keeps me in adequate shape and it does not take all my free time." 

Any of those cross-fit exercises, or weight-lifting or pulling exercises can be done at whatever speed, force level and repetition that is tolerable, starting at a near no-load and slow few repetitions. The body starts to adapt within a week or so of daily exercises.

What I did was different from normal resistance muscle building, in that the level was kept to where I could do it every day.  I've been at this pull-up thing for four months now, and necessarily started at the near-zero force and slow few repetitions of light pulling, but by now can get in sets of up to 12 full pull-ups with but a few minutes of warm-up tugs on the bar.

Pull-ups are force-limited by one's weight, so for me I can by now finally do them every day without soreness.  I have a random "strong" day every so often, where I am able to increase the repetiton count further (usually by one rep) without feeling like I am over-stressing anything, and these increases are usually sustainable in the days ahead.

Thanks for the comments.. I will give it a try ... slow to give my body time to adjust.

Nick, I have found that now I'm on the low doses, 5mg it takes me twice as long to reduce and I also experience more fatigue. You are doing wonderful with your reduction whilst also keeping yourself very fit. Just don't go too mad and give your body plenty of rest at the new dose before attempting to reduce again. Regards, tina

Thanks Tina. I am seeng rheumi today after 6 weeks and will bring up tapering issue with him. Last time when I saw him, he wanted me to go from 8 to 7, which I did in 2 steps.  This time I may just ask him to have a pause before next reduction. After all, the main purpose for pred is to  help us with PMR symptoms and there is no good reason to reduce it below the level that we need, if the body is not ready.

It seems that 7 mg is one of the sticking places as it's the point where the adrenals really do have to start responding.  I can remember one day, when I was probably at about 5, realizing that I felt completely "flat".  There was no way that I could respond to any kind of stimulus.  I just wanted to sit and completely veg.  That was quite different from the fatigue I'd felt off and on at each previous reduction.  And yet from that point I have to say that things have started to improve.  I get tired, but it's after doing something that justifies tiredness.  I still can't do as much in a day as I used to pre-pred.  But I don't have that flatness any more, feel almost normal, just lazy, perhaps. And I'm now at 3.5 and part way through a taper to 3.  I think the secret is finding that sweet spot where you do the most activity you can without triggering more than normal tiredness, and then making sure to have enough rest to recover.  Referring to the famous spoons theory - just use half your spoons, then rest so the drawer is refilled before using any more....

knock on wood, this transition seems to be going easy. I know I am approaching physiological level of cortisol and my adrenal glands have to kick in sometimes soon, but no complains (yet).

It will be interesting to see how you do as your taper lowers.

Hello Nick, good to know things are still looking good for you. YOu are reducing nice and slowly and you are still very comfortable with your new higher level of exercise. It's inspiring to know that your cardio vascular system is clearly better than it was 7 years ago which is an inspiration to some of us that over the years have let ourselves go somewhat. So it's clear if one wants to improve their overall health it's never too late to start. Regards, Tina

During the previous taper periods, I would usually feel some symptoms in the first half of the taper ( first  or second week). This time it was un-eventful, other then usual slow start in the mornings. Every morning as soon as I take pred, I NEED to walk at least 20-25 min and then I spend about as much stretching, then shower. After that, I feel "normal",  stiffness is gone and my day can start.

I see rheumatologist on Aug 10th, will do bloods and decide on taper... Usually he is very accomodating, but I would like to try to reduce as low as I can.  Although I am not having any serious side effects, in a last couple of months I noticed that my skin has become very "tender" and brooze easly. Not complaining, especially considering after reading how much people suffer from PMR.  I can live with broozes, just sometimes it looks like I have been in a cat fight .

Sounds like me.  I found 7 a bit "sticky".  Below 7 the taper went well for a bit, and that was when I seemed to get small red contusions on my forearms.  I've had to slow down my taper since breaking through the 5 barrier, and fatigue is worse, so it's no longer even just a question of avoiding PMR flare, but also letting adrenals have time to catch up.  Previous two tapers (from 5 to 4 and 4 to 3, in .5 steps of course) I found it helpful to sort of "prod" by trying a reduced dose and seeing how I felt, and it seemed to take a while before I felt confident I could reduce some more.  But this time, now that I'm at 3, I really feel I must not try to go lower just yet.  However, on the up side, I haven't had any red bruises for quite a while!  

It would give me a great pleasure if I could inspire one person to use exercise to improve their overall health.  And you are right, it never is too late. After PMR I focused more on getting better. Giving myself "my time" to improve.

One story that I read at "Total Immersion" site was tryly inspiring for me... It was about 93 year old with heart condition that stated swim program. First time he swam 1/4 mile it took him 22 minutes. A year later he was able to swim the same distance in less then 12 minutes!

You can change profoundly at any age!

I agree.  It was when I tried to quickly drop below 3mg that I ended up flaring and now at 4mg for several months.

Easy does it, better to allow all symptoms to drop off fully before dropping dosage further in my opinion.

Yes, I've been hanging around 3 longer than at any other tapering dose so far.  Won't try to drop again until I feel really well.  Tempting though it may be....  Finding I have to make a real effort to rest or I really pay for it the next day.  Probably the worst stage for this, so far.  

I got it. After reading Bristol paper, I wanted to simulate their experiment of staying longer at 10mg, but thought that I would do the same at much lower level, when I hit the snag in reduction, about ~4-5mg.  What you both describe is exactly that level, minimal dose that keeps the sympptoms at bay and also lets the adrenals adjust and start functioning again.