Last year, approximately 8 months ago, I had reduced my Pred from, 10 mg to 9 mg! I remember the feeling of utter joy, when I realised that I had finally reached "single digits."
Unfortunately, my elation didn't last long... After traveling, by train, to Birmingham to see The Eagles and a day later taking the train back to London to see the Boston Red Sox play the New York Yankees, at the London Stadium (on the HOTTEST day of the summer, I might add) I had a killer FLARE.
My dosage was increased from 9mg to 12mg... no relief. I then went from 12mg to 15 mg, still in agony... I finally went from 15 to 18 and 'eureka,' I felt like me again! 👏🏻 However it has taken me 8 months to get from 18mg back down to 9, where I had been in June 2019.
I am, of course, thrilled to be here, but I'd be lying if if I didn't say I was cautiously optimistic... I will not be cramming two major events into 48 hours. I will not be training all over the UK (or the EU). I will be taking it easy and reducing very, very slowly.
Thank you...wish I could reply I'm well , but really struggling right now, back up to 15 mg where I started 8 years ago to no affect.....😕 we carry on with the struggle together....
Well done for getting back to 9mg! I got to 9mg for the first time last week and was feeling good for 3 days but then awoke with a strong left temporal headache and occular pain - so went to A&E, they sent me to Ophthalmology. A&E gave me 750mg of Methylpred in one shot, and the Ophthalmologists have raised my daily dose back to 25mg and a suggested taper back to 10mg over 4 weeks!
I will try but I'm not sure I can manage that, especially not with the 5mg weekly drops on the new target schedule. Fortunately I have learnt alot about my PMR and tapering from this great forum and I'm quite prepared to take as long as it takes, especially if GCA is now on my radar.
I hope you continue from 9mg this time, but take it easy.
Hi. I found this old Post which helped me get off my pred over 3 year period. Hope it helps.x
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
I am SO much better Melissa. Nearly leading a normal life since I had acupuncture in August. Knee much better. Back on the tennis court for short hits albeit without much speed! Haven’t needed a daytime snooze since September. Working a few hours a week.
Long may it last... not sure whether I have been through adrenals stage yet or not. That may put the cat among the pigeons!
I have tried three times to get below 6.5mg Can’t get there yet!
I am lucky at the moment!
AND I arrived in BArbados yesterday. BUT it is pouring with rain.
Mind over matter... you CAN get there and YOU WILL! Time and patience. Look at the progress you've made! Back on the tennis courts! Wow! I am happy I'm able to walk 10,000 steps, I could NOT play tennis!!!! And working! Good on you girl, god on you!!!! Keep it up! 🤞🏼
PS - let me know when you hit 6.0 mg, so I can celebrate!!!!!!
Gotta love “9”. I’ve been there three times in the last year. Unfortunately that’s the dose when things go pear shaped (sigh). My last attempt was in early January when I introduced just one dose, followed by 6 days at 9.5. Boom!! Return of shoulder pain, neck pain, etc. This last flare caused me to up to 13mg before symptoms subsided. I’m down to 10.5 now, but pretty discouraged to go lower than 9.5.
Before this flare I had my 3-month appt with GP who pointed out that my ESR and CRP had been climbing higher and higher in the 4 months proceeding, and he advised me I was at the very top of the “normal range” with both markers. So now I will pay more attention to these monthly bloodwork results, and not attempt a taper when they are so high. I was also sick in Dec so this certainly could be responsible for the high numbers.
Enjoy 9! Stay there as long as you feel necessary before dropping again. Listen to your body, and if it protests...consider a .5mg drop. Hoping things unfold well moving forward.
There is a lot of wisdom in your words " I will be taking it easy and reducing very, very slowly." Thank you for sharing this. It reminds me to be smart and take it easy. Thank you.
Every time I go to London it kills me afterwards. I think it is up and down all the stairs at the underground lugging a case too! Don’t get a total flare but definitely a day or two of increased pain. But I’m bloody minded and won’t let it stop me although I do have to take it easy in between trips. I would have love to have seen The Eagles!
I have been on 10mg for 3 years. Had several attempts to get down to 9mg but still haven't managed it successfully. Well done to you! Hope I'll be joining you sometime soon😊
I know the feeling Melissa. I am at 8mg currently. Only reducing by 0.5mg per month. Scared to get too optimistic after 6 years of this b....y illness. 🤞🤞🤞
6 years.... BUMMER! I am in my third year and doing pretty well, thank goodness! I hope you're feeling ok? Be brave (when you're ready) 7.5 here you go!!!!
I know exactly how you feel. I am back to 10 again which is where I was in summer of 2015. It just never ends. Slowly slowly again....! Take care and good wishes to you.
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Flared once again at 7.5-disappointing.
Back again and on prednisone
