Follow on from my "New to PMR"

Diagnosed on the 27th April.  On 20mg of Pred for 1 week.  Had bad tension headache, spaced out ,exhausted, couldn't sleep and tingly numb hands but the pains went away!.  GP did not like how I was reacting to the steroids so told me to come down to 15.  People on this site advised me that it was too quick. I stuck to the fifteen... two weeks now and I still have all the same feelings and I am sore again although not as bad as before. I had my bloods done again  yesterday and the doc has just phoned me with the results.  On 1st blood test CRP was 15 now 8.  ESR was 26 now 5.  Don't quite understand what this means?

She wants me to stick to the 15 for another 2 weeks and then go down to 12.5.  She is referring me to a rheumatologist. What exactly will this specialist do?

I am a golfer and at this time of the year usually play in the team matches and in competitions at other golf clubs with my friends.  The way I feel I wonder when I will play golf again.....sorry I am sure there are many people who are much worse off than me.  May  

Bloods look better, I would stick at the 15 as your GP recommends and then reduce slowly to 12.5 mg.

I was diagnosed on the 28th MAy, docotor started me on 20 mg Pred and I also had headaches with it but no other problems. Saw him Moday and he's redued me to 15 mg for atleast a week then slowy reducing to 10 mg he hope. So far on 15 mg I'm ok in both not pain or withdraw probelm but still have a bit of a headache but not as bad so far.  My ESR was over 50 when I was first tested and last time was down to 21 so going in the right direction.

Alan

Ok I'm cracking up that should have said 28th April not May lol

Alan

I replied on the other forum.  OregonJohn's suggestion about the slow reduction to 12.5 is a good one.  Google healthunlocked dead slow nearly stop.

Although you may be able to go down by one mg at a time provided you stay at the level for a week or ten days to make sure dose is working.  DSNS method excellent once you get to 10, but that's in the future.....

 

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 no one 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 or half mg:

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 doses. 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.

 

Good luck with that John.  Do you have any idea how often Eileen (and others) have posted this reduction plan, or a link to it?  Anyway, personally I'm thrilled to see it again, to remind myself of how it goes, so thank you for putting it here!  

It is in the pinned post at the top of the "front page" of this forum - that's the link I keep posting. 

If you go to

https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708

you are at the front page - and a list of every thread ever! Which will provide entertaining reading for several weeks...

You can use DSNS right from the beginning if you have problems reducing - originally we suggested from 10mg to fit with the Bristol schedule but realised later that many people struggle long before that.

May, ESR and CRP measure the inflammation in your body, so the prednisolone has obviously had an effect.

However, you can still have inflammation and be unwell without it necessarily showing in these tests, I believe especially after being on high doses of pred for a long time,

as in my case where my markers no longer reflect what's going on in my body.

In my case my doctor doesn't even want to share my numbers with me.  She's adamant that we are treating the symptoms!  In a way I wish I hadn't insisted on knowing because the result in February was almost identical as the previous one (October?) and it was actually higher than May's first reading.  Hopefully latest will be more encouraging.  If there's no reduction in inflammation markers, even though I have minimal pain, what might that mean?  I am told that it's normal for my age, but we all know that normal for one's age doesn't necessarily mean it's good.

identical to

I'm not sure what it means either! But I do know that our markers for "normal" vary. It could also mean that your markers are high due to some other infection. They don't measure specific PMR/GCA inflammation, but any inflammation in your body.

I know, which is why I worry, because I'm pretty sure that neither time did I "have" anything else.

Let you into a secret - this is Eileen post!  I have a copy on my PC for reference so just cut and pasted.

Thanks to Eileen

Haha, I knew that.  Good idea to copy onto desk top.

My CRP and ESR haven't changed significantly from diagnosis, but I can feel dreadful or fabulous - it has no bearing on them!

Thanks for re-posting all the great advice about why it's best not racing to zero mg.

Seems I can't read this often enough, I always find myself dipping below a comfortable level, tolerable, but not comfortable at all.

Recently I forced a drop from 3 to 2mg, since my rheumy prescribed plaquenil because (in his words) I was just hanging there at around 3mg for so long (since november, when I dropped fully down from 5mg to 3.5mg, and with a further 1/2mg reduction in early March). 

I found myself justifying my declining to take any of the plaquenil by first dropping to 2mg (which was going surprisingly well for some 4 weeks between March and April) but then attempting to drop further to 1.5mg.

The drop to 1.5mg could not be sustained for longer than a week however, so I flared (fatigue, stiffness and localized bursitis) and have now seemed to re-stabilize at 2mg/day, which involved this last ten days of relative suffering as I struggled to remain quite active.

So thanks again, and thanks to Eileen.

Thank you for all this info.  May