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
john54812 ricky23486
Posted
Hi Ricky
I have been on prednisolone for 2 years, I had the same problem as you I would get down to 4 mg and have a flare up. My rheumatologist said the pred was not working. I am on methotrexate 3 weeks now and this is making a difference. Still on pred but in no pain and reducing 1 mg per month . Hope this helps
ricky23486 john54812
Posted
Hi John,
I wasn't offered methrotrexate. I hope it works well for you- some people have side effects from it but for others it seems to work.No pain seems to be so elusive these days!
ClaireJG john54812
Posted
Do you think you might have RA? After over 2.5 years with presumed PMR, I've just been told I'm more likely to have RA. I'm on 9mg pred and haven't been able to reduce any further, but I've been on methotrexate for four weeks and the pain is at last very slightly better, although I'm not pain free. That would be amazing! Have you experienced any side effects from the methotrexate?
diana21296 ricky23486
Posted
Why not try DSNS method dropping by a half, not 1mg. Then stay on new dose for more than a month. Nothing to lose. Be a tortoise. I only drop half and stay there 2 months to avoid flares.
ricky23486 diana21296
Posted
you might well be right...i didnt think of it. .what dose have you reached now.?
diana21296 ricky23486
Posted
Just down to 5mg after 3.25 years. Dr lets me do drop at my own pace as we are all so different.
ricky23486 diana21296
Posted
are you pain, stiffness and fatigue free?
diana21296 ricky23486
Posted
Feel bit stiff on rising but better after hot shower. No pain. Get tired more easily but I do an awful lot. Friday drove 3.5 hours to meet family for supper out. Saturday decorative glass course, then drove 3.5 hours home shattered. Better half stayed at home watching England play badly at Rugby!!! Today tired but not surprised...
ricky23486 diana21296
Posted
Phhhew..... tired just reading yoir schedule! well, it looks like you are doing ok!
jillian92038 ricky23486
Posted
It sounds as if we are in some ways struggling with the same difficulties. After spending time on pred it is so difficult when we hit new problems to identify the cause of the pain/ exhaustion etc etc. I heed Eileen's sound advice but am reluctant to go back up on pred, knowing it is going to take months and months to get back down if I am confusing adrenal insufficiency/ sciatica/ pmr.
ricky23486 jillian92038
Posted
Yes, indeed - I have been going up and down the prednisone ladder like an automated yoyo - and each time it gets more difficult to get back down again to where I was before.But if it is the adrenals protesting and not the pmr then I can begin to understand why all this keeps happening. I hadn't thought it through before but it is beginning to make sense.
EileenH ricky23486
Posted
Stop yoyoing - it always leads to trouble!! As soon as it isn't working - go back. Don't wait until you are in trouble,
jillian92038 ricky23486
Posted
Yes but what do we do? My feeling or advice if I was replying to anyone else is go back up on preds until your life or way of living is acceptable. Having said that I am struggling with my inner voice saying ' Get on with it Jill - it's just pain - be stoic! otherwise you have months ahead of you getting back down.
EileenH jillian92038
Posted
It isn't "just pain" - it is your body telling you that the dose of pred you are now at is not enough to manage the inflammation. And since there is no cure for PMR, the whole point is adequate management. If the management isn't adequate - then you will have symptoms.
jillian92038 ricky23486
Posted
Just wanted to say thank you Eileen. I went up to 10mg 36 hours ago and am beginning to feel much better and more positive. I think I (we) are so hung up on reducing weforget the bigger picture. Also I think that when I go too low on meds my brain stops working!
Riduculously I can see clearly for other people!
EileenH jillian92038
Posted
Inflammation rising doesn't help brain fog! And most people can see someone else's problem, just not their own.