Will it work? Dead Slow and Stop Plus -
Posted , 17 users are following.
I am now in my 5th year of Prednisone. Flaring every time I get below 7 mg.
In despair I tried the over- the- counter food supplement CBD oil. I wasn't sure if it helped or not so ordered another 10cc bottle from the UK - but the customs people confiscated it - so I won't try that again! I then went to a pain specialist to apply for a licence for medical M. and was told that I would have to be on analgesics unsuccessfully for a year and then apply again.. but life's too short to throw away another year and fill my body with more stuff. Then a friend referred me to a very senior rheumatologist who had helped her. In addition to doing a million tests to eliminate anything else, she diagnosed sicca syndrome which she thinks actually been caused by the steriods. It seems now that I cannot live without the steroids but I also cannot live with them.
The rheumatologist assured me that I would be off Prednisone within 2 years by following an 'old' protocol. She also said she was confident that the adrenal glands would function again using this very slow protocol. The protocol she suggested is the "dead slow and nearly stop" protocol with the addition of a full month between each reduction.
So, it would take 6 full weeks to taper from the old dose to the new dose by 1 mg. and then another 6 weeks at the new dose before beginning the next 1 mg reduction. This basically means that each 1 mg reduction will take 12 weeks.
Will it work? Who knows... maybe it's worth a try!
1 like, 35 replies
erika59785 ricky23486
Posted
Your reduction plan might work well. 5 years on prednisone myself with many ups and downs..........I am reducing by 1/2 mg a month which has been helping. I am on 8 mg.
ricky23486 erika59785
Posted
I tried half a milligram a month too - but - as soon as I got to below 7 the flares began again..... time will tell! thanks and good luck to you too 😃
Joydeck ricky23486
Posted
Same here, except I'm 8 months around 7 mg.
EileenH ricky23486
Posted
Always worth a try!
However - however slowly you reduce, if the PMR is still active you won't get off pred.
And what makes her think it is sicca due to pred? It could be sicca due to PMR (it does happen). Or you may also have Sjogren's as well as PMR. All autoimmune, with or without antibodies.
On another forum someone has just reported that their new endocrinologist has done some research and 50% of PMR patients develop secondary adrenal insufficiency/don;t get off pred. I hope to get a reference next time she sees him.
EileenH
Posted
Ooops - Good Luck!!!
karenjaninaz EileenH
Posted
That sounds depressing- 50% of PmR patients develop permanent renal insufficiency?? Is that what I just read?
EILEEN HAS THAT BEEN YOUR OBSERVATION OVER THE YEARS?
jillian92038 EileenH
Posted
Not sure what I can add but am sure the slow, slow and extra slow way is the only way for those of us that have been on pred for some time.
I wonder if you are the same- I am beginning to find it very difficult to differentiate pains! I developed acute sciatica as a result of being on crutches having broken my ankle. The pain was the worst I have ever experience( including 3 childbirths) . Problem is I was still reducing and managed to get to 4mg - probably aided by the fact that the sciatic pain obscured the PMG PAIN! I am now aching everywhere and cant differentiate the cause. !
I think may be that some of us have to accept that we may not get down/ off completely.
Maybe we need to be a bit more accepting and give ourselves a bit of slack!
EileenH karenjaninaz
Posted
ADRENAL insufficiency!
That's what a study done at St James hospital in Leeds has found. An old study said 5% which I can believe even if a lot of doctors think that is too high. It is difficult to know why a lot of people get stuck for years at a low dose - is it really PMR or is it adrenal insufficiency that is causing the problems? How many people are there dragging themselves around not functioning well because they haven't been tested? The 50% isn't just total lack of function, it includes poor function too.
ricky23486 EileenH
Posted
thanks!
EileenH jillian92038
Posted
I give myself all the slack I need. I refuse to compromise and so I take the amount of pred I need, Luckily I have a GP who agrees with me. The rheumatologist isn't quite as on board - but at present I need 15mg or the atrial fibrillation which is obviously associated with the vasculitis starts up again. The cardiologist can't do any more - so pred it is, at her instigation really. I'm not ecstatic at 15mg - but it is far preferable to the alternative. At least I can function well.
ricky23486 EileenH
Posted
Eileen, does that mean that the symptoms of adrenal insuffficiency and pmr are the same? Last year my endocrinologist said that when I got to 5mg daily I should do an adrenal function test - but of course never having got to 5mg meant that I didn't have the test done - So maybe that's what my new rheumy is focusing on in her dead slow and stop plus protocol?
Time will tell.....
jillian92038 EileenH
Posted
Sound advice!
EileenH ricky23486
Posted
Some of them can be - the fatigue, aches and pains and so on.
Yes, the very very slow approach MAY work for the adrenal function. It won't work for PMR that hasn't yet gone into remission
richard07199 EileenH
Posted
I'm a little concerned about what I'm reading here.
I hope I 'm misunderstanding what I see.
It looks to me that I'm learning that people using pred over a period of time are possibly surpressing their adrenal glands to the point that they may not come back...ever!
Please tell me I'm wrong.
EileenH richard07199
Posted
No way of knowing until you try really. A recent study has found that, in PMR patients who have been on pred for a long time, in about half of them the adrenal function remains suppressed or doesn't return at all.
You have to understand though that the reason the adrenal glands don't produce cortisol is because there is plenty of corticosteroid in the body: it is similar to you having a wood burning stove in your living room as well as a central heating radiator. As long as the wood burning stove is providing enough to heat the room, the radiator won't produce more heat. As long as you take pred at a dose above about 7.5mg/day the body feedback system registers there is enough present for the body to function so it produces no more as too much is also bad for the body.
Once you get to about 5mg or below the body registers that it must produce some corticosteroid itself to top the dose up to what is required. It is a very complex feedback system involving several organs/glands/substances. Sometimes one or other bit doesn't wake up properly - it may be the adrenal glands. It may be another factor.
For half of us it will probably come back providing you reduce the dose slowly enough. In others it may not come back entirely. There has been thought in the past that adrenal function may be involved in PMR - but no proof was found of an association. Maybe there is - but more complex than was thought.
However - yes, for some people adrenal function may not return - but it may be the use of pred, or it could be something else associated with the autoimmune part of PMR.
Twopies EileenH
Posted
Eileen, im not very bright, as you can tell from my posts. hence this question: i thought that the pmr patients who couldnt get off pred had to stay on it because when they tried to reduce, they got flares. so are there some who cant reduce because of adrenal insufficiency symptoms? or are they flaring because their adrenal axis function is poor? what im trying to ask is: are the symptoms the same? Not worded well, hope you know what i mean. thank you.
EileenH Twopies
Posted
Once you are below about 7mg there are two factors involved: is the dose of pred still enough to manage the PMR symptoms is the primary thought. But as you reduce below that your adrenal function has to take over to some extent and top up the steroid level to be enough for the body to function. Usually if you reduce very slowly the adrenal function will return at the same time and it is the PMR that is the limiting factor. But sometimes you reduce the dose and the PMR doesn't make its presence known - and as long as you feel OK you will carry on reducing and most doctors assume all is well. That isn't necessarily the case though - one lady was at 2mg and felt fine but her rheumy was one who always checked adrenal function with a synacthen test. It turned out she has no natural adrenal function. Some experts are confident that as little as 2 or 3mg pred is enough for normal day to day living. The problem might arise if you were under sudden or severe stress when the adrenal gland couldn't respond to more adrenaline and produce cortisol.
Some of the effects of not having enough are similar whichever the cause - fatigue and aches and pains for example. Others differ.
richard07199 EileenH
Posted
Thank you, Eileen. Thorough answer, but a scary one.
It's telling me that we pred users may be succesfully covering up the effects of PMR with medication until the PMR decides to leave our bodies, but in the process, that medication is permanently damaging the adrenal glands in at least half of us.
Which is worse, 5.95 years of PMR or a lifetime of adrenal damage?
EileenH richard07199
Posted
IF there was a guarantee that PMR was gone in 6 years that is one thing - but there isn't. And I speak from personal experience - I had 5 years of pMR no pred. I've been on pred for 9 years, the chances of getting of it are probably small. No contest: pred every time.
It isn't difficult to manage - just replacement therapy as if your thyroid was shot.