What a difference half a mg makes!!
Posted , 6 users are following.
Hi all,
You'll have heard me whinging about the flare-up I've had for about 6 weeks now. I was taking 13.5mg prednisolone on alternate days before and doing fine. I'd tried going down a bit (to 13mg) unsuccessfully and then the flare set in. I eventually gave in and upped the dose to 15, then 16mg and finally 17mg. It was so-so, liveable with but not great.
Two or three days ago I decided to take 17.5mg as that means all enteric coated pills and I'd had a bit of stomach discomfort with taking some uncoated tabs to get the dose.
What a difference!! Two days of feeling pretty good, much less back discomfort (I won't grace it by describing it as pain)! :lol:
So - going down half a mg over two days really gave me gyp at one end of the scale and going up the half mg over two days has made such a difference at the other end. And doctors are suggesting drops of 1mg at a time, doing it every couple of weeks in some cases. I think they need to put their thinking caps on - or maybe their hearing aids in and listen to the patient on the receiving end! :roll:
Just saying!!!!!
EileenH
0 likes, 17 replies
MrsO-UK_Surrey
Posted
Good luck with the reduction to 5.5 today and it's good to hear how well you have been feeling - that must be a good omen for continuing to reduce successfully and it sounds as though you could be back to at least the 4mgs of last December before too long.
Yes, it does seem that you can over-exert yourself and suffer the consequences but also can feel somewhat worse after having a sitting around day as well - it's frustrating trying to find that happy balance where you can tiptoe around PMR so that it doesn't notice! Here's hoping that we can all keep tricking it......and the steroids!
MrsO
EileenH
Posted
I saw Bob's post earlier but didn't have time to reply.
I think there are a few points here which have been raised:
1. Bob - as MrsK says, PMR doesn't \"progress\" in the normal sense of that word. It is probably an autoimmune disease - even that is not certain - and most of them tend to ebb and flow. There are some that don't, such as some types of thyroid disease and diabetes, depending on whether cells which produce something essential to life have been destroyed. Even in the case of diabetes you can live without those cells - providing you don't eat any carbohydrate at all and that was the original treatment for diabetes before there was the possibility of externally administered insulin.
2. Nor, I think, does it \"burn out\" after 2 years or, indeed, any other length of time. It may go into \"remission\" - just as cancers can, as rheumatoid arthritis can. For both these diseases, treatment with certain drugs can slow the advance but there is no real \"cure\" as yet. By cure I mean that the disease goes away and will never ever come back. The truth about cancer \"survival\" figures is that after 5 or 10 years it is said that if you get another cancer, whether it is the original one again or a new type, it is considered as a \"new event\" so you \"survived\" the original disease. It all depends on whether all the cells were killed first time round - and it is impossible to demonstrate that for certain even though there are some new techniques which say they will identify any cells and show them on a scan. And there is no cure for PMR.
3. A great deal is to do with perception and expectation. The current thinking is that, over the age of 50, 1 in 200 people will develop PMR at some point. On that basis there are an awful lot of people going around with it. In my own family, I can identify with a fair degree of certainty 2 of my grandparent's generation who had PMR. My grandfather had other problems as well but he lived his later years permanently in a bad temper and stiff and in pain - he did nothing in the house, he was fed, watered and looked after by his daughter. My great aunt was treated as a delicate little flower all her life - until her death at 88! She also did very little in physical terms, she was part of that genteel generation of the middle class which became impoverished as a result of the war.
Nowadays, we expect to be able to live a normal life well into our 60s, even 70s - and so it seems does the government! At 55 my mother and MIL were both \"elderly\" - at 58 I still ski, drive thousands of miles a year around Europe and work. I'm lucky, I don't go out to work, I work from home. I seriously doubt I could still be doing my original career as a technician/scientist - the PMR has seen to that, with or without treatment.
4. I have had PMR for about 5 or 6 years that I can be certain about. Until the last year I took no medication other than ibuprofen to try and dull some of the pain when it got too much - not out of choice but because no-one took me seriously with my complaints. I spent my time going to the gym (in the pool) and arranging my life so I could cope. In January of last year it hit me like a ton of bricks and it coincided with a period when I was not allowed to drive - I had to do everything on foot. We had also moved for the first time to a house without a toilet on both floors and no longer had a dishwasher. That may sound banal - but I suddenly was doing stairs several times a day and using my hands far more than I had for years. Within days I was almost an invalid. More than about 50 yds was beyond me because of the pain I was in, getting out of bed was well nigh impossible. After about 2 months I managed to get here to our flat in Italy - no stairs and a dishwasher! It didn't go away altogether - but by doing very little and being very picky what I did or didn't do I was able to ski, not