Pain vs Side Effects vs Damage
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I've been trying to formulate this question for some time. Its not the full story of course but three dimensions is sometimes different to two.
I was brought up in the days when DNA was being explored. Immune systems entered the vocabulary later, around 1975.
I guess at one extreme we may have untreated debilitating PMR. And presumably potential long term damage to blood vessels and other soft thingies like muscles and hearts.
At the other extreme of mostly contained symptoms there's side effects from medication. Which brings its own potential long term damage.
The overly simplistic question is whether there is a Goldilocks spot. Where the symptoms are sufficiently contained such that they are tolerable and the side effects are moderately acceptable and no long term damage occurs.
I've said no damage but possibly a minimum of combined damage from the disease and the treatment.
I haven't added activity as that complicates further.
I suspect we are all making this sort of judgement continuously, either explicitly or implicitly.
The gap in my knowledge is the potential long term damage from the disease. To put it into perspective, I suspect my tendancy is towards suffering a bit of pain to avoid the pred side effects.
Which brings me to the guts of the question. What is the long term damage from PMR symptoms reduced by pred?
1 like, 17 replies
julian.
Posted
I went for a quick detour into being mesmerised for days by the alphabet soup of medical papers, in which its possible to wander forever in the labyrinth of self defining medical terms, never to emerge, nor ever to reach the centre.
Atherogenesis is one such term. I got there from the equally obscure proatherogenic effects. But being a de-babeliser by nature (and career) I can discard the obfuscating mumbo jumbo in favour of something with equivalent meaning and a chance I can understand. Medical dictionaries are for me the equivalent of 1950's railway workers' rule books.
Mildly amusing to me I guess as when I studied the basics of blood flowing round in tubes driven by a double acting double pump it was called circulation. Not a hint of vasculation - yes I know, its a term for plants, not animals.
Vasculitis, as all here know, is inflammation of blood vessels. Thickening, weakening, narrowing, scarring, and so on. Restrictions in blood flow. Thus, (my interpretation) potential damage to the bits and pieces relying on good blood flow.
But as far as I can make out, we may be sicker but we are just as mortal (or immortal if you wish) as the general population.
While out of necessity I managed to tough it out through the PMR pain for a few months in my case I felt it wasn't sustainable for much longer. Something had to give. Hence a whimpish rush to the first available capable doctor. And now I don't fancy whatever vascular system problems that can occur with my untreated, visible, inflammation.
But then again, I'm not enjoying the steroid side effects. And there's more than a hint of vascular system problems as part of the parcel of steroid side effects (I can count to 82 but remembering what I read at the beginning by the time I get to the end is beyond my steroid reduced short term memory)..
Strangely all the talk here of increased weight seems relevant. My basic physics suggests that if there's more of me for my vascular system to support (see how easily my new found vocabulary rolls off the tongue). Thus it will wear out faster. My greatest defence seems to be leaving stuff off the shopping list. Though I do like hot X buns - the rotten sods put them on the shelves the day after Christmas.
So anyway, it looks like I'll carry on doing what I've been doing, and do what almost everyone else does in my precariously balanced situation and find the minimum steroid dose which relieves the pain and the majority of the inflammation. I'll follow the sound advice on steroid use available here.
And hope for the best. While pretending I know more about it all than I really do.
monica45790 julian.
Posted