Reducing below 10mg - should I be optimistic or play safe?

Hi All, This is my first post but I have been reading all the useful information and experiences found on this site since I was diagnosed with PMR in December 2016, I had the usual pains, stiffness, etc which started in June 2016 and after 24 hours on pred I was a new woman who could get dressed easily and touch her toes.

The GP started me on 15mgs for 3 weeks, then I reduced to 12.5mg for 3 weeks and have now been on 10mg for nearly 6 weeks. I am visiting the GP next week to discuss the blood test results I had and to start reducing down to 9mg.

I seem to have a relatively mild attack of PMR when I compare my symptoms to many of you so feel I may be lucky enough to be able to drop 1mg per month as seems to be the common practice in the UK. I also feel that it might be sensible to take a copy of the Dead Slow method to show the GP and see what she thinks.

Would you go with the first method of reducing 1mg per month and only change to the Dead Slow method if there are flare ups. ?

I know we don't have a crystal ball but I do wonder whether most people have flare ups sometime and if so whether it would be best to start DSNS now (if GP agrees).

Thanks

Calvi

[PMRpro Ambassador]

I would start with DSNS now - but then, I'm biased! If you start at 1 day new, 4 days old dose it is still 1mg per month - but it won't be as hard on the body perhaps. The expert advice for tapering is "not more than 10% of the current dose" - and 1mg at 10mg is already that. But everyone is different and there are many people who probably do just sail down the reduction - until they have their first flare!

But however you do it - if you have ANY signs of a return of symptoms: SLOW DOWN! Stop reducing any further and it the symptoms persist go back to the previous dose. Wait a month or so and try again. Don't EVER try to force a reduction - it usually ends in tears!

[Hidden in reply to PMRpro]

Hello PMRpro

Thanks for your reply. You have confirmed my gut feeling that slow is best so hopefully the GP will agree with my wishes. I will let you know how I get on!

[PMRpro Ambassador in reply to Hidden]

What often seems to happen is that someone is able to reduce well at the beginning but if they have a flare because of overshooting the dose they are looking for (the lowest dose that manages the ongoing daily new dollop of inflammatory substances) and are not able to get it under control quickly, later reductions are more difficult.

Originally I was only given 6 weeks of pred, 2 weeks each of 15,10 and 5mg. I had the miracle in 6 hours after the first dose - and at the end, 6 hours after missing that first 5mg dose I was worse than before, or at least it felt that way. I had been fine at that 5mg for the 2 weeks, maybe I hadn't had long enough to tell, but I was never able to get below about 9mg for another few years! It wasn't until after a major flare (for another reason) and a switch to a different form of steroid that I was able to reduce that far again. I still think that if I hadn't had that first awful flare it might have been different.

[Hidden in reply to PMRpro]

Thanks - I shall definitely get the GP to see my point of view of SLOW IS THE BEST!

[PMRpro Ambassador in reply to Hidden]

Good luck! Might he be impressed when told Prof Sarah Mackie from the Leeds rheumatology department is using it in a clinical study? The feedback so far has been good.

[Hidden in reply to PMRpro]

Good advice, I shall go prepared.

[tgca in reply to PMRpro]

This is very timely advice and thank you PMRpro as I am beginning the dsns method today from 10 to 9. The last time I tried to drop, I was unaware of dsns and had a flare so stuck with 10 (out of cowardlyness) for rather a long time... fingers crossed. Keep upright on the snow!

[piglette]

It is very easy to get over enthusiastic about reductions. Getting down to 10mg seems to be easier than reducing on lower levels, particularly when the adrenal glands have to wake up around seven or seven and a half mgs. As PMRPro suggests go for the DSNS method and you should get away with no flares hopefully. Also you can still reduce at a reasonable speed as you will not have to increase to get over flares.

[Hidden in reply to piglette]

Thanks for your support and advice.

[zorroaster]

I am down to 1mg after nearly 4 years. I tried to reduce to zero in December and felt really bad. I saw my very nice rheumatologist this week who said that 1mg is pretty much a homeopathic dose but many people find it hard to get to zero. He also said that the final stage can be sore shoulders and arms which I have and its possible that this may never go completely. I was relieved in a way to know that I wasn't alone but will try in the summer to see if I can get to zero. He also said that winter can be a bad time even if the inflammation is no worse that biomechanically everything is a bit stiff and cold so may hurt more. Good luck with lower pred!

[Rimmy in reply to zorroaster]

This kind of invaluable information is giving me some serious insight about the whole notion of tapering to an 'acceptable' level. I am still early in the process and yet realised at he outset my GP started me on a really very high level of pred - 50mg for first 3 days and then 25mg for a week and I am now down to 17.5mg after another reduction to 20mg - all in three weeks - and this early scaling down has been to a large extent of my own volition - and based on info here as I thought it was obvious without symptoms of GCA I never needed that much to start with - and he did freely admit he had only ever seen a few people with PMR before me. I am already noticing even at this level some aches and pains which I think aren't PMR related - like an 'older' problem of a touchy lower back which I have probably over-exercised while in the delights of being a 'brand new woman' of the 'duracell' variety. So I have deduced from so many valuable posts: - not ALL pain can be categorised as PMR related - we are all getting older and 'other' stuff will happen anyway - SLOW tapering sounds best by far and I will decrease from now on at a very slow rate and not be too surprised if I hit some rough patches which might require raising the dose again at least for a while - NOT necessarily to expect an 'end' to all this - I may be fortunate but reading these posts has made me more realistic about that possibility- and not to be too worried if I have to stay on a 'smallish' dose of pred for a long time - that may end up being preferable to overwhelming 'flare -ups' which can occur when trying to taper. I have also realised that we are all having unique experiences in many ways. I would like to also THANK you all as this kind of info is irreplaceable - our health is after all not merely a 'perfect match' for any 'algorithm'.

[Zebedee44 in reply to Rimmy]

Rimmy I could scarcely believe what I was seeing when reading this post by you because it is exactly what happened to me, with the initial dose of 50mg, then rapid reduction to 25mg, 20mg and now 15mg. You are not local to LLandysul in West Wales are you? Do we have the same doctor?

I am due to see him this week and have bloods taken before I attempt any further tapering, but I have already asked for a supply of 1mg tablets because I know I won't be able to taper any faster if the pain in my shoulder girdle is any indicator.

[Rimmy in reply to Zebedee44]

Hi - no I live in Western Australia - so not same doctor obviously. I think the slower the tapering the better if others' experiences on this forum are anything to go by !

[Zebedee44 in reply to Rimmy]

Hoho, not very likely then. Having said that my daughter who lives in Cardiff in West Wales is hooked up on a dating website to a lad in NEW SOUTH WALES. Long distance love affair!!!

[JulieR2 in reply to Rimmy]

Great to hear you positive approach really inspired me and gave me a lift

[paddyfield in reply to zorroaster]

homeopathic or not, if I forget to take the 1½ dose I have got down to, I know by the 8 pm "flu" without fail. Even reducing by ½ mg makes an appreciable difference. I am reducing by the equivalent of ½ mg a month. So far, so good. It can't be psychological because until the "fluey" symptoms set in I dont know I have missed a dose.

[DorsetLady PMRGCAuk volunteer in reply to zorroaster]

Hi zorroaster,

I found that I needed a couple of attempts to get to zero. Had been reducing in 0.5mg steps since 6mg, also been on Pred for over 4 years. I had been using a slow plan, not DSNS but one that took 5 weeks to get from one dose to the other, so I thought it would be okay.

However, in the second week of reducing I didn't feel good, so I thought - stop, go back to 0.5mg every day and after a couple of weeks start again. So I did, with success that time.

Your GP may think 1mg is neither here nor there, but it is, and so is 0.5mg!

As the saying goes, "Every little helps!"

Good luck next time around.

[Chrob]

This could be me writing this, except I was diagnosed in Jan . I see my doctor mid march and thought I would ask about the very slow plan . Start ed on 15 now 12.5 . It would be good to know how you get on.

[navejasjoe]

When my wife started on 15 mg prednisone, it took her about 2 weeks to feel any relief, then the relief kept getting better. She was on 15mg for 2 months, then went to 12.5mg for a month, then 10 mg for another month. When she went to alternate every other day to 7.5 and back to 10, she felt the symptoms come back. The rheumatologist, in his infinite wisdom, kept reducing the dosage instead of going back to my wife's "magic number" of 10 - only because the blood tests showed no inflammation. Her GP has gradually brought her back up to 10 and after 2 weeks now, she is feeling a lot less pain.

[Hidden]

Thanks to all of you for your input and sharing experiences. It really is a lottery on what "the experts" know or think about PMR. I shall keep in touch and let you know how I get on.

[Rugger]

I am doing the DSNS taper starting with 1 day new dose, 4 days old dose and as PMRpro says, it's the equivalent of dropping 1mg / month - in fact, it takes 26 days to get to 4 days new dose. I started the DSNS at 9mg and am half way to 6mg now. I realise anything could happen on the way to 1mg (!), but so far, so good with no flares. I took a copy to my GP and he gave it his blessing, but even if your GP is sceptical, if she says you can reduce by 1mg/month, you can use the DSNS taper to achieve that and she'll never need to know how you got there! As many of us say on this forum, we learn so much from each other and probably know more than our doctors about the management of PMR. My GP estimated that the practice has 10 patients out of 11,000 with PMR and with 5 doctors, that's only 2 each!

Take care and all the best for your appointment with the GP. Make sure you get a good supply of 1mg tablets!

[Hidden]

Thanks Rugger, I shall take your advice and stock up on 1mgs!