Advice -Going Down From 10 mg of Predinisone

Hello Candace

That's very interesting.  Were any of the symptoms you had in 2009 similar to the ones you developed in 2015?   Have you had your calcium and/or PTH tested recently?   Are you certain it is not the start of PHPT again?  There could be a possibility that they missed a 2nd little tumour in 2009.  Also there is such a thing as all-gland hyperplasia.  

It would be very interesting to know a bit more about your medical journey in 2009 leading up to the tumour you had removed and what symptoms you are having now, that's if you don't mind sharing, thanks.

Kind regards.

Rosemary

Rosemary -

Sorry it took me so long to reply.  I'm new to this site and strill trying to figure it out.

I had no stiffness in 2009.  And yes, calcium and PTH have been done recently and are wonderfully normal.

In 2009, the journey started with blood tests that showed low calcium.  My doctor had me do the 24-hour urine catch test and found high levels of calcium.  She did not test me for PHPT but decided it was a kidney issue.  I did research and discovered PHPT.  I asked for the PTH test and found it was elevated. Doc told me to wait.  I said screw you and found an endocrinologist.  Surgery was done 2 months later.

My symptoms for PMR started in October and got worse in November.  I had muscle aches that made no sense -- it felt like I had been exercising hard but I had not. Then the morning stiffness hit.  I struggled to get out of bed. 

What made me finally see a doctor was that I went for a massage.  It was painful and made things worse.  The bloodwork done by the doc showed elevated CRP but a normal sed rate.  That's when I was put on prednisone and began seeing a rheumatologist. 

I just tapered to 10 mg.  And I am taking it easy.  But it is tiring me out. 

Candace

Thank you so much for your advice Nick. I think you are speaking about that Nearly Stop Method (DSNS).......

I remember copying it....but not sure if I copied correctly. Doesn't seem right to me but then on Prednisone I am forgetful & make mistakes.  Is the following list correct to follow when needed to reduce by half additions around 8mg Prednisone? 

from 8mg to 7.5mg Prednisone……On the first day of reduction of this Nearly Stop Method, take 7mg + half of a 1 mg Tablet as your new dose. Then on the next 6 days, take 8 mg as your old dose as seen below.

1 day new dose, 6 days old dosage

1 day new dose, 5 days old dosage

1 day new dose, 4 days old dosage

1 day new dose, 3 days old dosage

1 day new dose, 2 days old dosage

1 day new dose, 1 day old dose

1 day old dose,  6 days new dosage

1 day old dose,  5 days new dosage

1 day old dose,  4 days new dosage

1 day old dose,  3 days new dosage

1 day new dose, 2 days old dosage

1 day new dose, 1 day old dosage

1 day old dose, 2 days new dose

1 day old dose, 3 days new dose

Thanks again everyone. Bless your hearts for the time you take to answer desperation! Than goodness we have this Forum!

This is the posting by PMRPro who developed this particular reduction plan:

I have been asked by two or three people on another thread about this reduction. Because of the way this forum works I thought it was simpler to just start a new thread so it is obvious where it is - I've posted it several times already but there is no real way to find it again that I can see. It is long to try to make it understandable - those of you who use word processing will be able to copy and paste it into a file on your computers to read again and again.

"Reducing pred: dead slow and nearly stop"

In an attempt to make this reduction scheme available more simply to the people who request it I am posting it here where it can be found easily. I hope noone minds but I have copied and pasted it what feels like dozens of time!

"A group of us worked out reduction schemes individually that have allowed us to reduce far further than ever before but they are all basically the same - and they were based on a scheme a Swedish gentleman worked out when he simply couldn't get below 3mg without pain. Img at that level is 33%, 1/2mg is 17% - way above the 10% that has been recommended for years. So he used table to see the daily doses and took the new dose on one day, old dose for a few days and then proceeded by repeating that and then reducing the number of days of old dose - until he got to everyday new dose. It worked, he got off pred and has been off pred for at least 3 years (it could be longer). Something similar to mine is being tried by a consultant rheumatologist in the north of England and he too finds it works for every single patient he has given it to. As it did for several ladies beforehand.

My reductions are VERY slow. I use the following pattern to reduce each 1mg:

1 day new dose, 6 days old dose

1 day new dose, 5 days old dose

1 day new dose, 4 days old dose

1 day new dose, 3 days old dose

1 day new dose, 2 days old dose

1 day new dose, 1 day old dose

1 day old dose, 2 days new dose

1 day old dose, 3 days new dose

1 day old dose, 4 days new dose

1 day old dose, 5 days new dose

1 day old dose, 6 days new dose

By that stage if I feel OK I feel safe to go all new dose. I suppose you might be OK starting and stopping at "1 day new, 4 days old" but I was terribly sensitive to steroid withdrawal pain so I err on the safe side. Once you get to the "everyday new dose" - if you feel OK you can start on the next reduction, no real need to spend a month at the new dose.

This avoids steroid withdrawal pain - which is so similar to PMR pain that you often can't tell which is which and some of us suspect that many flares are NOT the PMR returning but problems with steroid withdrawal. Using a scheme like this also means you can stop immediately if you have any problems - you might be fine at one day old dose, 2 days new (lower) dose but not at a 3 day gap - but you have dropped your dose a lot and that is the idea. It also isn't as slow as you would think - you can reduce at a rate of about 1mg/month on a continual basis.

The Bristol group start new patients with PMR with 6 weeks 15mg, 6 weeks at 12.5mg and then a year at 10mg before continuing the reduction and that achieves a far lower rate of flare (20% instead of 60%) and I suspect their flares then come below 10mg as they then do the 1mg at a time reduction. Just below 10mg is a common dose for people to get stuck at - and I (and others) believe it is because even 10% drops are too much for many patients. These patients are then labelled as "steroid resistant" or told they need methotrexate to help them reduce but we have seen this slow reduction work for those patients too. We believe that methotrexate (MTX) works for patients who have late onset rheumatoid arthritis (LORA) or LORA and PMR together. Very few patients get off pred altogether when taking the MTX - those who do are probably the mis-diagnosed LORA patients - or another arthritis that responds to MTX.

When you are at doses below 5mg it is a good idea to rest at each new dose for a month at least before trying the next reduction. At this point you risk overshooting the dose that is controlling the inflammation so waiting a short time to see if symptoms reappear is helpful. If you just continue there is a possibility that you get to very slightly below the "right dose" and inflammation will start to reappear very slowly. The blood tests will lag even further behind the dose reduction - there must be enough inflammation to increase the proteins being measured for the blood tests to rise.

Contrary to the beliefs held by many doctors it is NOT a race to reduce the pred dose. Doing that will lead to flares, needing to go back to a higher dose and starting again - and the end result is you took MORE pred than if you had reduced more slowly.Last edited by PMRpro

after step

1 day new dose, 1 day old dose,

it is important to slowly increase new dose, so the next few steps are:

1 day old dose, 2 days new dose

1 day old dose, 3 days new dose

1 day old dose, 4 days new dose

.......

Look at the post Anhaga made.

What I was saying is that I use short version of the same plan that starts with third step of the original schedule:

1 day new dose, 4 days old dose

1 day new dose, 3 days old dose

1 day new dose, 2 days old dose

1 day new dose, 1 day old dose

1 day old dose, 2 days new dose

1 day old dose, 3 days new dose

1 day old dose, 4 days new dose

So the transition is faster, but still gradual enough. 

Schedule has been developed by experimentation, and that is exactly what I am doing... I think after you understand the concept behind it, it is OK to do variations...

My physiotherapist suggested hypoglycemia and that actually makes sense to me so I'm going to make sure I eat more.  Thank you for asking.

Thanks Nick. Next tests due to be done in a couple of weeks.  Only saw physio yesterday and of course she always asks how I am and when I told her, this is what she suggested.  I do eat three meals and three snacks a day, but being so strict with the carbs is maybe backfiring now.  

Jeepers Anhaga,  you'll disappear into nothing!  It's summer so - Ice cream (claories, calcium), strawberries & cream, apple tart & cream (or ice cream ).  Keep going. . . The weight will increase (better for bones too!) and you'll be happy as -  a person with massive shares in big dairy- product companies!!

J

Mmmm  that's a good start right enough but you can eat that in the winter anyway. We have great whipped ice cream this side of the Atlantic made with organic milk and ' full of calcium'  - that's my great excuse!  Seriously though,  I'm trying hard to put on a bit of weight. Nuts are fine, but you get tired of them quickly enough . . . .  

There's bread and honey in the house, no icecream.  Not a fan of ice cream anyway as I have such sensitive teeth unless I can lick it out of a cone as a special treat.  We do have a few strawberries in the garden we can have with yoghurt at suppertime, so thanks for the reminder!