Residual PMR pain whatever the dose

You say: My theory is if I'd expected to remain entirely pain-free I would have been at a higher dosage all along and probably suffering more side effects.  I have had the same theory but with rather less conviction.

There is another side - you are expecting too much of your body for the dose you are on. People who work generally need a higher dose of pred to function. Managing PMR/GCA is NOT only done with pred - you have to do your part by pacing and resting appropriately Because you are at a higher level of fitness than many you will be able to do more than them - but you still have to reduce your expectations and establish what your NEW limits are. I could ski - but had to have rests on the lift! I could ski a distance x 3 times in a row without any problems at all - but I couldn't do the distance 3x all in one, in fact, I couldn't even do 1.5x without my thighs saying I had to stop - and stop for the day, not just a short rest. They hurt and turned to jelly (or something) and it was irresponsible to continue because I didn't have the control I would have needed in an emergency situation. Not one I might have created - but someone else.

Yesterday, a short bicycle ride, three hours of tennis and a 7 km jog in the late afternoon.  Today, half hour on the bicycle and two hours in the gym.  Tennis again tomorrow.  So far, so good.

Hi Joydeck.  I should put that into context for you, because in fact I did have several of the more concerning effects of pred, including, and the one I couldn't control, increased ocular pressure.  I was monitored by my eye doctor and I later learned that the level went higher than is often the case for treatment, although I was never prescribed any drops.  The other things, which were also "invisible" side effects were a high blood sugar reading, which I controlled through diet but which didn't really get back to normal until my pred dose was down to 5 mg, and quite probably some bone thinning, again, the problem reversed through diet and exercise.  But these three things worried me more than the side effects people mostly complain about, like weight gain (not my problem).  So for me it's been a balancing act between keeping the inflammation in check and not suffering long term damage from the invisible side effects.  I never have allowed the PMR "niggles" to disable me.  If something gets to that point I zap it with increased dose, because as is often said, if you are suffering from PMR pain while on pred you're actually getting the worst of both worlds - potential side effects and no pain relief!  I do sometimes feel I'm on a bit of a tight rope and I expect most people on here would rather be assured of more complete PMR control, but there it is.  

Your added context sure does help.  Thank you.  

On researching prednisolone, I soon concluded that glaucoma and cataracts are my major worry.  Most of the other side effects of pred should be negated by my splendid diet of 35 years: invariably eating and drinking what seems healthiest.  

I am curious.  Are those PMR "niggles"  you can tolerate, bilateral and symmetrical pains in prime PMR areas: shoulders, hips and buttocks?

Joydeck

At our last support group meeting an optician was the speaker, his Mother has PMR.

During the course of his talk, he told us that those of us who do wear glasses and then are put on long-term pred (not just used for PMR), to change our lens to re-actolite rapide.  Bright or Sunlight + pred, encourages the growth of existing cataracts.  He advised always to wear sunglasses when bright sunshine for those who do not wear glasses.

When I started with GCA and went to see my optician and I already had the start of cataracts but I had always used re-actolite rapide mainly because I could not be bothered with changing glasses for prescription sunglasses.

This time she advised me to also have night driving glasses.   11 years later those cataracts of mine have never grown. 

Now we were told that it does not work for everyone, but it does for most people.   So it is not a cast iron guarantee, but worth a shot?

Interesting.  I do not need distance lenses but when I'm outside I have long been careful to wear sunglasses.  I remember hearing, long ago, that UV eye protection is needed, in summer sun, from a couple of hours after dawn until a couple before sunset, at least.  I will be even more careful now!

For many months a sort of stiffness in my upper thighs, which seems to have gone now, and been replaced by a feeling of tension in my upper back, just below my neck.  Yes, bilateral, although this upper back thing is more centralized. Sometimes I would have trouble standing, or at least feel that uncomfortable stiffness which slows down your movement, but I'd say this was always pred withdrawal because as the dead slow taper continued it would go away again.  I knew I was in trouble a month or so ago when I had trouble getting out of bed, this wasn't pred withdrawal as I'd recently increased my (very low) dose somewhat, but a flare.  A niggle is a sort of background discomfort which doesn't really affect me at all.  It is there if I think about it, but doesn't intrude on my consciousness nor limit my activity or range of motion.  

The lenses I've bought for years block UV radiation without changing colour.  I also have separate sunglasses for outdoors.  

My very reliable optician told me much the same - that all lenses block most UV. I use prescription sunglasses but only when I feel I need them. No sign of cataracts - and I experience far more sun than in the UK!

Here in NM we normally wear sunglasses outside all 12 months of the year. Always when driving in the sun light. It is to imagine how clear the sky is, mostly no clouds and no air pollution. The difference between being in the sun and being in the shade is hard to believe that you experience it. So sunglasses are a must! With a smile and thinking positive.🙂

No need to make the residents of northern Europe feel even more depressed about their weather!!!! Even I, living in northern Italy, have many days where wearing sunglasses is far from ideal when driving! I also live in an area where there are many tunnels with only short distances between, often in narrow valleys. Reactolite lenses are also not advisable - you end up drivng in the dark...

No, l my "residual" shoulder pain is not symmetrical whereas my PMR flare-up pain, in the same area, certainly has been.  This changing residual pain is unlike any pain I experienced before contracting PMR in September. 

As for exercise, ongoing loss of muscle mass is a real concern.  That the pred dulls pain, I had not considered.