Reducing pred: dead slow and nearly stop method
Posted , 122 users are following.
Copied from Eileen's post in another discussion.
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."
Further comment from Eileen in original discussion:
Can I add a codicil to the very slow reduction plan in the above post:
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 increases the proteins being measured for the blood tests to rise.
Someone has asked this question:
"I'm at 7mg going down to 6mg, and I'm at the point where I'm starting to shift from more 6mg than 7mg, but I can tell the pain is returning. So...do I jump up big to say 10mg, or try 7mg or 8mg? I hate the very idea of going up at all, but it is what it is."
My reply was:
No - you go back to the last dose that worked well immediately and stop the reduction. This isn't a "flare", this is your body telling you that you have got to the dose you are looking for: the LOWEST DOSE THAT MANAGES THE SYMPTOMS. It doesn't mean you won't get lower, it just means not yet. However slowly you reduce, whatever scheme you use, you will not get below that dose without a return of symptoms because of left-over inflammation that hasn't been removed by the amount of pred you took. It is if you ignore these warnings that you will allow a build-up of the inflammation to the stage where you will have a flare on your hands.
To comment on something someone else said - you have differentiated between steroid withdrawal and a return of symptoms by using DSNS. If you were going to suffer with steroid withdrawal you will notice it the first day you use the new lower dose. That is the idea of DSNS - you go back to the dose your body is happy at for a few days and then show the new dose to your body again. For me it usually takes about 3 times for my body to accept the new lower dose and stop complaining.
37 likes, 145 replies
g.95482 Emis_Moderator
Posted
Housework? Did so little that it didn't make a difference.
George
patricia_74996 Emis_Moderator
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Anhaga patricia_74996
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You need to post this as a new post. Only people following this discussion will see your question, and after all this time it may not be many people. To the best of my knowledge, and I'm no expert, if you have PMR it is extremely unlikely you will be on the medications forever. Most people recover somewhere in the 2 to 6 year time frame although there are always outliers.
3party Emis_Moderator
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janjo20 Emis_Moderator
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I have been reducing pred for over a year from 30mg down to 3mg without problem (but not as per the table as above). However, although ok on 3mg, and more or less ok on alternate days 3/2mg, when, as instructed by my doctor to go with 2mg, my PMR has come back with a vengeance. So I've gone straight back on 3mg (last two days) but still very achy and legs feel inflamed, particularly when lying in bed. Haven't had chance to go back to doctor again (she's off sick!) and you have to book up, but managed to get in a blood test, haven't yet been told result but I know the ESR must be raised. Would you say 3mg is enough or should I go to 5mg?
BettyE janjo20
Posted
To have reached 3 form 30 without problem is very good going.
Most of us have reached sticking point(s) at some stage, usually before getting to 3. After several set backs my GP told me to stay on 10 for three months.
Not qualified to prescribe, of course, but from my and others' experience I would say go back to 5 and if that works, fine; If not, increase it until you do feel comfortable. If the bloods show raised markers then you'll be sure you need a higher dose for a bit. Unfortunately, sometimes the markers do not reflect the increased inflammation.
Hope you are comfortable soon.
lois41428 Emis_Moderator
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paula21528 lois41428
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Hi lois
It sounds as if 5mg is too low if you still have the pain of pmr . Like Eileen says treAt the symptoms not the lab results .
Why don't you make a new thread Eileen is the one to give you good advice Lois she is very good. Hope you get pain free soon
MR._BELLA Emis_Moderator
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Heron31716 Emis_Moderator
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BettyE Heron31716
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I was prescribed Calceos ( calcium and Vit D3 ) while I was on Pred as I couldn't take Alendronic Acid. I also have taken CLO for many years. My bone density was rated " amazing" by the surgeon who did my hip replacement but no way of telling how related that was to the supplements.
Bethune BettyE
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BettyE Bethune
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jennybshaw BettyE
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Oh thank God Betty. I tried to look up CLO and the nearest I could find were nuclear elements. I thought, where in heck do I find these.😅
Thank you for the unintended laugh and I will try CLO. My Father was a great believer. Xxxxxx.
Let’s start a laugh in. Would do us all goodxxxxx
reykay Emis_Moderator
Posted
Hello all, very interesting looking at the various experiences. So, here's mine. Diagnosed with PMR (but no GCA!) last September. SED rate was over 130. So bad it kicked an elevated heart enzyme, and they first thought I had a mild heart attack. Luckily, doctors diagnosed the PMR in about 2 weeks. Lost about 25 lbs. in that short time. Started with a huge injection of Pred, then to 40 to 20 to 10 tablets. Since then, we gone down 1 per month, and I'm at 6. Once I go to 5, they will slow it down even more by going down 1 every 2-3 months. So far, so good. Hard to distinguish any muscle pain or stiffness with physical activity - like going to the gym, etc. From this discussion, it sounds like I will really find out where I am with this when I get under 5mg. Although, the slow rate they're taking through may be the best approach. Also, take calcium and D supplements. All blood work looks good. Weight gain is very frustrating... When people say debilitating, I totally get it! Worst illness experience ever. I'm pretty pain tolerant - but this was horrible...