Major Flare

[PMRSUE]

I have had PMR for 5 years. After managing to reduce to 5 mgs from 6 mgs over two months, I developed severe pain in my arms and hands although my ESR is quite low at 9. All this coincided with my twice yearly appointment with my Rheumatologist who said and I quote "why not try going back to 6 or 7 mgs and see how you feel. We'll do a blood test and I'll see you in 4 months". Needless to say, I ignored her 'advice' and upped the dose to 10 as advised by my GP on previous occasions. Still no improvement so I made an appointment with the GP who was unsurpri sed by my Rheumi visit. I told her I had more confidence in her and that I am considering changing or going private. All that aside, she has upped my dose to 15 mgs for ten days, then 10 for a month whilst I am on holiday. Thankfully, I am much better but am worried about dropping from 15 to 10 as reading other posts here this seems a huge drop. I can't see the GP before I go away so any thoughts would be appreciated. Thank you.

[PMRpro Ambassador]

You are just upping the pred by (approx) 5mg from where a flare happened - a common approach and up to about 10 days it is fine to drop back to where you were. You have already done the hard work from longer term higher doses and you won't have been at 15 for long enough for it to be a big problem. You may well notice the 5mg drop but paracetamol will probably help that. 5mg drops are normal in shorterm use of pred - and what you are doing is just starting at a slightly higher baseline to clear out the inflammation before starting on a clean sheet - so to speak ...

[PMRSUE in reply to PMRpro]

Thanks for your advice Pmrpro. I am hoping my holiday in sunnier climes will help too.

[PMRpro Ambassador in reply to PMRSUE]

I do hope so - but summer here doesn't make much difference to me! Where are you off to?

[PMRSUE in reply to PMRpro]

Lanzarote for three weeks. Probably psychological, but the sun always helps me feel better, not to mention, no housework, shopping, cooking etc. Bliss.

[PMRpro Ambassador in reply to PMRSUE]

Well yes ...

[Devonspinner in reply to PMRSUE]

Just come back from 2 weeks in Costa Teguise, and yes, the sun and warmth make you feel better. Have a good time. I'm already fed up with British weather!

[PMRSUE in reply to Devonspinner]

Thank you. This is my second visit to Playa Blanca, I absolutely love it there. Unlike me to visit anywhere twice but something is calling me back....whooooo!

[Blearyeyed]

Pros said everything.

Have a lovely holiday , relax rather than having too much sightseeing and rest the day before and after travelling so you don't get those Travel Day Flares.

[PMRSUE in reply to Blearyeyed]

Thanks Blearyeyed. Yes, not even bothering with ironing before packing...just in case...creased clothes to match my body this year!

[Telian]

If you’re on the increased dose for a short time only about two weeks, you can usually drop straight back down without any problem.

I recently increased from 4 mg to 20mg for 4 weeks then decreased from 20 to 15 for one week then 15 to 10 for one week without problems.

(I had a severe case of pomphilix eczema and steroids were the treatment. Nothing to do with my GCA/PMR.)

When I tried to drop from 10mg back to 4mg, on GPS advice, I had awful headache after only two hours so took Paracetamol and upped it to 6.5 for two days and was okay then 5 for a day without problem - then back to 4mg and all okay.

I’d been on 4mg for 18 months so knew it might be a risk the big drop from 10 to 4 and it was but as I’ve always suffered nasty withdrawals I knew what to do and it all worked out in the end.

Try the drop to 10 and if you’re okay and have the time before your holiday then go to 5 but stay there until after your holiday - Paracetamol will help get you through any withdrawals but if not stay on the higher dose that you’re pain free on until you come back. Happy hols.

[PMRSUE in reply to Telian]

Thank you Telian. It really is a case of trial and error as we are all different in our response to medication. Will stay on 15 mgs until Friday then back to 10 for the three weeks I'm away. GP ringing me the day after my return. Fingers and everything else crossed.

[Telian in reply to PMRSUE]

Sounds like a plan.

Have a good holiday.

[PMRSUE in reply to Telian]

Thanks Telian.

[poppetpain]

Have just posted this "old" Post that helped me reduce successfully. Hope it helps you 😘

Dead slow and nearly stop reduction plan - PMRGCAuk

PMRGCAuk

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Dead slow and nearly stop reduction plan

PMRpro

PMRproModerator

5 years ago•68 Replies

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

[HeronNS in reply to poppetpain]

This is pinned. You should see it to the right of the post. You may have to scroll up. (This is if you are using a computer, not sure where the pinned posts appear on a smartphone.)

[PMRpro Ambassador in reply to poppetpain]

It may be an old post but it is referred to on an almost daily basis on the forum - by me of by no-one else! It is in widespread use.

[PMRSUE in reply to poppetpain]

Thank you poppetpain. I had recently managed to reduce from 6 to 5 mgs over 7 weeks using this method but flared at week five. Increased to 10 for a week, then back to 6 now this latest flare, so disappointed. Hopefully, one day, this unpleasant disease will burn itself out.....

[PMRpro Ambassador in reply to PMRSUE]

But you have got to 6mg, by any standards a low and physiological dose. I doesn't mean you won't get lower - but at any given time you won't get lower than what your body needs at that time. The median time to reach 5mg (i.e. the time for half of patients to get there) is just under 18 months - half of us take a lot longer.

[PMRSUE in reply to PMRpro]

This is my 5th year with PMR and I did get to 5 mgs just before this flare. Carry on regardless, nothing else to do. Thanks for all your good advice.