Prednisone

[crackers]

stick with it jack.good luck.
john.

[Sangye]

yes, i know that is the opposite to my attitude a couple of weeks ago. Well, i've changed my mind this week. Ok?

okay.

(I'm only adding these additional words below because apparently I'm so long-winded I never knew there's a minimum message length of 10 letters.)

[Doug]

As "they" say, "It's so crazy it might woik ["work" in Bronxese)]!" Hope so, Jack. I feel your frustration.

[Carol]

Hi Jack, I'm interested that the doc thought that the pain in your legs is caused by the Pred. My docs just shrugged and didn't know what caused my legs to wobble. I thought it was the Wegs but maybe it's the pred. I have been going slowly down with my Prednisolone BUT at 8 mgs I am becoming stiff and had the funny shivers again. Thought I was going well with my reductions. I'll stay on the 8 and just see if I get any worse,maybe this body will adjust. I've had some stress lately and wasn't able to do my usual meditation - flat IPOD while I was away from home.

[Jack]

Hi Carol, sorry to hear that you suffer from Flat Ipod. I don't think there is any medication available for this.



I have been searching for a very long time for the reason behind the muscle wastage and pain in my legs and have been to every specialist I can think of. All the tests they do return a negative result, but the common reaction is, "Its probably the steroids". Hence my dilemma with reducing my dose - I feel better if I take more, but fear that I am doing even more damage. I'm now considering increasing my pain relief medication to something more serious than the occasional Paracetamol (helps quite a bit). This is also I route that I'm not too keen on.

[Sangye]

Jack, since they've ruled out overt nerve disorders, I think it's a given that the muscle wasting is due to steroid myopathy--ie, destruction of muscle fibers. It usually affects the larger limb muscles.

This explains the weakness, but how does this cause pain? Picture bringing one leg forward in walking. To pull the weight of the leg up, forward and against gravity takes tremendous coordination and strength at the level of the muscle fibers. In myopathy, many fibers are missing or impaired, so the remaining ones have to do much more work. If enough fibers are impaired, the entire muscle might not contract properly. The end result is pain. This isn't rocket science, and I just can't believe the MDs are so confused.

When someone who's really out of shape begins exercising, they have pain because their muscle fibers have atrophied from disuse. In myopathy, some muscle fibers have atrophied and some have been destroyed, so there's something to work with if you go very slowly.

I'm gonna nag you to find a pool. You're not ready for swimming or anything close to that. You can do the smallest leg movements while standing or floating on support equipment and have no pain. It'll go a long way to building the existing muscle fibers, which should decrease pain on land. From a neurological perspective, you're rewiring/re-stimulating brain-to-muscle pathways, which often delays or prevents further degeneration of an area.

Also, on land we tend to live in very limited ranges of motion, especially with chronic illness, weakness, etc.... Being in water allows you to greatly expand those ranges, which stimulates more joint receptors and nerve endings.

I think this can help you decrease the pred and control the pain without painkillers (or at least with fewer). I don't see any way it could harm you.

[Jack]

Oh no! Sangye is going to nag me!

What you say makes a lot of sense Sangye and I don't know why no one I have seen has tried to explain it. Your explanation of the pain mechanism fits the facts. If I try to go up a step without assistance from my hands, it is the pain that stops me as I start to exert my leg muscles. The same goes for walking, but to a lesser extent.
I'm aware of the danger of getting into a vicious circle with lack of exercise and this is one reason why I might explore the pain killer route.

I have no excuse about the use of a pool. I have mainly been put off by my own lack of confidence in my body image, but I've just looked on the Web and find that both of my local pools have disabled clubs with exclusive use.

[Sangye]

Yeah, the body image part-- no getting around that. It was (and still is) the only thing I dread about going to pool PT. The therapy pool is in a regular gym, alongside a lap pool. So there's quite a mix-- fit people, disabled, seniors, etc.... Except for the young, fit people, ain't no one looking too good....

Once I'm in the water (and I waste no time getting in there, let me tell you!), I don't feel so bad. In fact, once I'm in, my ability to move more like a regular person lifts my spirits so much that I almost stop feeling like a sick person. It's the one time I feel like I'm back in the Land of the Living. The PT always has to make me get out. I want to stay in forever, because everything is so easy in there. Even sitting on the steps takes so much less effort!

[Doug]

With my "Body by Prednisone" (think Goodyear blimp....), I take some comfort in the fact that though I am a horrific sight naked (eeee!) or in a bathing suit, at least I don't have to worry about drowning: all that excess fat makes me unsinkable! Ha! + ;{)

[Jack]

Well, I dropped from 10mg to 9 with no ill effects so went down to 8 to see how that was. I've been feeling OK!

So yesterday, full of enthusiasm, I dropped to 7mg. Today, I feel crap!

I've just taken an extra 1mg and think I will stick with a daily intake of 8mg for a while longer.