The Game of Steroids
Posted , 6 users are following.
Don't misunderstand my title . . . it's no joke. It's life-changing, challenging and one big, often misunderstood battle.
My story is recorded in various posts over the last couple of years. Yes, I'm two and a half years in. Started at 30mg and worked down to 7.5mg.
I saw the 'Rhummy' a few weeks ago and my blood test showed 3 (whatever's) so it is pronounced that the Polymyalgia rheumatica [PMR] has probably gone and I'm signed off and returned to my GP. I'm also told I seem to know what am doing with managing the Prednisolone and unless I go over 10mg the 'Rhummy' was happy to leave me to my own devices.
But having had to increase to 10mg in the lead up to a very traumatic Chrustmas and onslaught of personal pressure I got down again to 8.5mg. But the old symptoms are returning, so worked on the principle that it was most likely steroid withdrawal I perseved, covering myself with pain killers. But now some 14 days on thise symptoms still stay and I want to go back to 10mg and get some 'peace'. But if I do I know I have to come down again.
The ' Rhummy' has said he is not bothered if I stay on 10 (I assume forever!) but that's not the best answer unless he knows something I dont.
i suppose my question is "Do people stay on 10mg for really long periods"?
Thanks everyone for being so great!
2 likes, 20 replies
EileenH davidmelville
Posted
First of all - if you were still taking 7.5mg of pred there is no way in hell the rheumy could say the PMR has "gone" on the basis of the blood test, probably the ESR, being low. The ESR being low signifies merely there is no inflammation present and since you are taking 7.5mg the pred is no doubt achieving that. I can only imagine that the rheumy is of the persuasion that 7.5mg is a physiological dose and isn't actually doing anything - but that isn't true either.
I spent a good 3 years on doses of above 10mg, I never succeeded in getting below 9mg for whatever reason. I eventually developed the "dead slow and nearly stop" (DSANS) reduction based on the idea used by a Swedish gentleman to get below 3mg but I used it from the start when I was switched to a new version of prednisone after totally hellish experiences on medrol. Using it I got to 3mg but decided 3mg was just a ted too far just yet and have returned to 4mg - I feel even better on 5mg, I know that.
If you use the DSANS approach the chances of it being steroid withdrawal are negligible, any return of pain is almost certainly PMR flaring. It has worked for a lot of people, enabling them to get lower than ever before.
I've had PMR for well over 10 years - it is still there. Or maybe it has been away and come back without me knowing. Whatever - a lower pred dose than where I am now makes my right deltoid muscle ache so, whatever is causing it, I'm happy here. So I had PMR for 5 years with no pred. Then had a good 4 years above 9mg, quite a bit around 15mg - I haven't disintegrated, imploded, or anything else. I put on a lot of weight with Medrol, I have lost it all and a bit more while on the current version of prednisone.
There are doctors who suspect that it is a bit more than just inflammation, that there is a degree of adrenal malfunction underlying PMR. I don't know of any proof of that and it is an older concept. But the way to manage it is a low dose of pred as one dose a day. Maybe he thinks that?
But 2 1/2 years of pred, having managed to get under 10mg during that, is not really horrendous. You have a rheumy that is happy with you at 10mg and isn't telling you to get off pred NOW. Go back to 10mg, get things properly under control, and then try the DSANS method of reduction and see what happens.
davidmelville EileenH
Posted
i shall go back to 10mg and watch with interest what it does? I'll give myself a month to really balance and start 'living' again and then try DSANS . . . it would be interesting to see what format you used to better understand things..
Thank you you so much.
EileenH davidmelville
Posted
My version is in posts 5 and 6 (or so) of this thread - easy to copy and paste into a file for your own copy. There is another version but I don't have a copy handy as it is from someone else and has to be sent by email since it is in a table. There is interest from doctor now - and lots of people reporting they are working for them.
Karyjo EileenH
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EileenH Karyjo
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Karyjo EileenH
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lodgerUK_NE davidmelville
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Anyone else can do the same.
erika59785 davidmelville
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I am 6 months into my PMR diagnosis by my GP. Luckily he is leaving it up to me to reduce sufficiently after flare ups. He gave me a schedule of 30 mg for 5 days and lowering by 5 mg after that until I reach 15 and then much more slowly until I reach 10 mg and STAY THERE FOR LIFE.
It sounds good, but I know it will be dificult to ever reach 10 mg.....because I have tried and would have flare ups on 15 mg. Sadly, I still have a LONG WAY to go....
Erika
davidmelville erika59785
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i just want be happy whatever the dose . . . I've a life to live and I wish to enjoy it, NOW. Tomorrow is in God's hands anyway.
EileenH davidmelville
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It's all swings and roundabouts...
erika59785 davidmelville
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Karyjo davidmelville
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davidmelville Karyjo
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EileenH Karyjo
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https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
It smooths the drop even more - and some people have used it to be able to reduce in 2.5mg drops when they have a form of pred that cannot be cut. It has helped even the people whose bodies protest at 1mg drops from one day to the next at higher doses. I started to use it from 15mg - I was very sensitive to reducing pred.
carol16456 davidmelville
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EileenH carol16456
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The slow reduction tackles this by just using one day of the new lower dose at a time and then returning to the old dose where you know you are OK. Then you reduce the time between each attempt at the new lower dose. I find for the first 3 individual days of lower dose I feel peculiar - that's the only way I can express it. But the next day I am back where I know it was fine for the next few days and I feel fine. After those 3 single days of feeling strange my body admits it is a fair enough deal and stops protesting!
You'll find it all written out here in posts 5 and 6 of this thread.
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
davidmelville carol16456
Posted
my own experience is that I 'sort' of agree but the 'sort' part is that above 10mg a day I never waited to see and if I felt stiff and in pain I went back up immediately. It is only as I get below 10mg a day that i 'have' tried to ride it out or cover it with pain killers.
Now, to be honest having tried it I'm not going to bother again . . I can see no sense in living on the edge of Polymyalgia rheumatica [PMR]. For me I see no point in pain and stiffness if another my will give me a better quality of life. Today's wobble was about allowing doubt to creep in . . . But I'm re targeted, quality, comfort, peace and a life come first!
but on a cheeky level, a milkmaid or two would put a spring in my step!
i know there is a much better technical answer and I'm sure it's being typed even now . . . . . .
carol16456 EileenH
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