ALTERNATE THERAPY
Posted , 6 users are following.
A couple of weeks ago I was asked this question via our website
[b:b8b60d6683]\"My query is based on the fact that one of the ways of using corticosteroids in other chronic conditions is to use double the daily dose but taken on alternate days - hence the name alternate day therapy. It is believed to mimic the diurnal variation of cortisol production in the body better and is associated with fewer longterm side-effects. I had gathered from the website that you are all non-medical people but I wondered if your nice consultant had ever said anything about it.\"[/b:b8b60d6683]
I asked my excellent Rheumy ( I do not know how I would have got through all of this without my two brilliant GPs and two Excellent Consultant Rheumatogolists) and this was the response'
[b:b8b60d6683][i:b8b60d6683]\"Yes, I often tell patients to take alternate days as the suppressing effect on the adrenal glands is minimal. I usually do this only when the dose is below 10mg prednisolone. If any one needs higher doses, whatever the advantages in terms of side-effects, the PMR or GCA often needs the steroids daily\".[/i:b8b60d6683]
[/b:b8b60d6683]
[i:b8b60d6683]Please note 10mg prednisolone is the key[/i:b8b60d6683]
This information could be of some use when trying to get down and not having to cut the tablets in half or use the non-entric coated 1mg.
But remember, never do anything without consulting either your GP or Rheumatologist. We are all different in someways.
[/i][/b][u:b8b60d6683][/u:b8b60d6683]
0 likes, 21 replies
EileenH
Posted
Tills and Lizzie Ellen - you sound just like I've been, low blood levels and - yes - 6 hours after the first dose I noticed the difference!
I replied to a post yesterday telling someone to google the name \"Kent Holtorf\" and something called \"the environmental illness resource\" - there is a lot of information about theories about chronic fatigue syndrome, fibromyalgia and PMR which I found interesting and there are others with similar ideas so they're not just \"cloud cuckoo land\" stuff. I'm always a bit sceptical until I find other confirmation!
MrsO - yes, you're quite right, there are tests for HPA axis function. However - we and our symptoms are currently classified as coming under \"rheumatology\" and suspected HPA axis diseases will be sent to endocrinologists. Once upon a time in the NHS you went into hospital with a problem under - most likely - a \"general medical\" consultant who did some tests and if necessary referred you sideways to the person (s)he thought was most appropriate. Or they went and asked their colleagues what they thought before deciding what to do. The attempts to make the NHS \"market led\" mean that now, if they don't know, they send you home with outpatient appointments which may or may not be the right investigations. Gone are the days when you might have 2 or 3 consultants standing at the bottom of your bed discussing a complex and confusing presentation! You only have to look at the differences in the way we were pre-steroids and the ways we respond to see we're complex (and confusing, or do I mean confused? :-)) Once upon a time we'd have been invited along as a clinical case presentation to medical students!
What I haven't yet sussed out is whether the HPA axis tests would be valid as long as we're on steroids - I suspect not. I'm also not convinced that the adrenals start production properly as long as we're on daily doses. I'm not even convinced that they start again if we manage to transfer to alternate day therapy until you on a really low dose because we were on a high enough dose to depress them originally. If you are on ADT from the start at a lowish dose then I think they probably do retain their function. It's long time since I did my endocrinology though. Holtorf also reckons that the usual tests done are not sensitive enough to show up what he thinks is a borderline status. I do know that one consultant in the NE treating ME patients (another name is chronic fatigue syndrome) says he often finds that, although their thyroid function tests are apparently normal, some of them do much better when he treats them as being hypothyroid.
All these things have connections with the HPA axis and auto-immune diseases - and several groups are looking at various aspects. There are groups in southern Germany, northern Italy and Hungary that I know of - which I find surprising as it is more common in peoples with Scandinavian origins so you would have thought the Swedes would have been in there wouldn't you! There seems to be a cluster of cases in Minnesota and that sort of area of the USA, which is where most of the immigrants from northern Europe settled. I don't think anything will be achieved unless they all get together - now, how about an international meeting somewhere nice with a load of case presentations? I'm sure lots of us will be delighted to tell our experiences to them, they could have quite a large pool of subjects!!!!!
Bet I've forgotten to respond to something,
Eileen
MrsO-UK_Surrey
Posted
I'm wondering who is going to be the first amongst us to be a guinea pig and test out this alternate day therapy?! Obviously, this should be agreed by the consultant or GP first. Personally, although now on 2mgs I do not feel like \"rocking the boat\" myself after taking 4 years to get to this stage! Reading your response regarding adrenal gland suppression or not, shall we just agree that the jury is still out on this one then?!
MrsO
BettyE
Posted
I read your info regarding the effect of stress on PMR and the allowances
we should make with astonishment that I can have been so dim!
When I had my first bout ten years ago it coincided with my mother's stroke. The second bout began just over two years ago ( having had five totally clear years, no pain, no steroids ) when we were planning to sell up and move to a less demanding existence. This didn't work out for various reasons so we made changes to our present house. All were great improvements but we lived with builders for many months. Stress! What stress? I just did not make the connection and maybe there is none for me but now I wonder.
EileenH
Posted
Um - I'm being a guinea pig! I don't have a consultant (in that he dismissed the diagnosis of PMR despite all the evidence supporting it) so I just deal with 2 lady GPs, one in the NE of England and one here in Italy, with whom I have discussed the whole tapering thing in detail and have been given their blessing to work on it by myself. They are there for any questions and the one here would refer me to a local rheumatologist if we felt it was necessary.
I had been at 7mg/day for several weeks and was about to try the next step down but changed over to 14mg on alternate days for a short time first to see how it went before going down to 13.5mg on alternate days. I had asked MrsK who asked her consultant, and I fitted his criterion of being below 10mg/day. I also did a lot of reading about the recommendations on how to do it beforehand.
I have a bit of discomfort in some of the finger joints which were affected towards the end of the second day but no noticeable increase in morning stiffness or anything else. The biggest difference I've noticed is in the hot flashes/night sweats: since I had both with the PMR and have continued to have them on the steroids I have no idea if they are a steroid side-effect or not! However - they are MUCH better since switching to alternate day therapy, so I'm sleeping better too. And they aren't worse on either day. I've been at that dose for a couple of weeks now and will wait to go down another 0.5mg until spring arrives here in the mountains! This morning it was -9C when I was skiing but they've promised warmth next week! The outside thermometer says +17C in the sun so it's looking hopeful!
BettyE - why should you consider yourself dim? The doctors don't make such connections either!
I'll keep reporting on my progress,
cheers everybody,
Eileen
MrsO-UK_Surrey
Posted
It is very interesting to read that you are, in fact, already trying out the alternate day therapy and have been successful so far after two weeks - that sounds most promising and I look forward to reading how your regime progresses. I'm sure that's a big plus factor for you with a resultant reduction in the hot flushes (very wearing) - as though the alternate day therapy seems to have regulated the hormones somewhat. I'm impressed that you have your PMR so much under control that you are able to ski - well done. I certainly couldn't cope with the -9 temperature..... I already have chillblains on my toes from this unusually freezing winter we have experienced here but, living in the South East, I suppose I'm a bit of a softie! Good luck with your regime.
MrsO
Nefret
Posted
My Rheumatologist is very, very good and has always been an advocate of tapering doses anyway, so I don't think she will mind if I give it a go.
I rather think it may not be until the summer once we are in our new home, but I will keep you all informed.
Nefret