PMR Tapering

[Nursing56]

Hi, I am 67 and was diagnosed with PMR November 2023. The symptoms came on very quick. Started in my upper thigh and very quickly spread to the other thigh, neck and upper arms. At one point I couldn’t get out of bed and the pain was excruciating. Prior to this I exercised 7 days a week and worked as a senior nurse, and still continue to do so, however struggle some days.

I was started on 15mg of prednisone, reduced to 12.5, two weeks later reduced to 10mgs and then 1mgs monthly.

I got down to 3mgs and the pain in my neck, upper legs came back. I also have pain in my spine and not sure if this is related. I have been told to go back up to 4mgs for a month and then to start reducing again. As much as I am desperate to get off prednisolone I am anxious that the symptoms will come back and wondered if 4mgs is high enough.

[DorsetLady PMRGCAuk volunteer]

I’d be inclined to try the flare protocol as described in link -returning to 4mg once you have things under control on the increased dose -

healthunlocked.com/pmrgcauk...

But you say you have got down to 3mg quickly - perhaps too quickly -so ease up

On the tapering from now on and only 0.5mg a month, not 1mg. Plain tablets can be cut .

Plus your adrenals are now starting to take up the slack -so you need to go slowly with tapering

[Nursing56 in reply to DorsetLady]

Thanks for getting back to me. I’m quite new to this . Can you tell me where the link is please

[DorsetLady PMRGCAuk volunteer in reply to Nursing56]

Sorry - pressed reply too quickly -

[DorsetLady PMRGCAuk volunteer in reply to DorsetLady]

.. and maybe have a look at this for general info - even though you aren’t new, new

healthunlocked.com/pmrgcauk...

[Nursing56 in reply to DorsetLady]

Sorry, just noticed you’ve sent the link

[DorsetLady PMRGCAuk volunteer in reply to Nursing56]

😊

[PMRpro Ambassador]

Hi and welcome!

I don't think just adding 1mg is likely to be enough - the flare protocol and THEN go back to 1mg above where you flared makes more sense and is more likely to work.

And don't be in a desperate hurry to get lower immediately. You aren't heading relentlessly to zero - you are titrating the pred dose to find the lowest effective dose: the lowest dose that gives the same level of relief that the starting dose did. To be under 5mg in 10 months is very good - the average time to get from 15 to 5mg is 18 months, You are way ahead of the curve and trying to force your way to a lower dose is likely to cause trouble. You need enough pred to manage the inflammation that is created on a daily basis and if you don't take enough, the left-over inflammation will build up over time until you are at risk of being back where you started - jusst like a dripping tap will eventually fill a bucket and overflow.

The underlying autoimmune cause of PMR lasts years - not months - and as long as it is active and creating inflammation you will need pred to manage it. It has cured nothing - there is no cure but PMR, unlike other autoimmune disorders, usually burns out and goes into remission. Until then you will need some pred. But about half of patients need pred for more than 6 years. This isn't a short sharp illness - it is truly chronic.

[Nursing56 in reply to PMRpro]

Hi, thanks so much for your reply. You’re absolutely right. I’m trying desperately to get off prednisone, but my body is telling me something different!! I will take on board the advice and the links sent to me.

[PMRpro Ambassador in reply to Nursing56]

Pretty much everyone is - patients are terrified of corticosteroids and doctors compound that fear. But the bottom line is that in the UK and most places really pred is the only option. Used properly - as we outline - they will manage your symptoms without too many horrible bits and you will get your life back. It needn't be too awful but you do have to accept that this is where you are and you can't throw the baby out with the dishwater Pred is likely to be part of your life for some time to come - and you know as well as I do, for a lot of us, that comes with the territory of having lived this long!!!! It is a privilege that we don't have to be a granny sitting in a rocking chair in the corner but if we go about it properly we can still do all sorts of things - differently maybe, but at least do them!

[alangg]

Hi. I hope that you are using a tapering plan to reduce your dose rather than a 'cliff edge' drop from one dose to another. Even at miniscule reductions in the dose, I stuck to a plan that took 4 weeks each time and then stayed for 2 weeks on the lower dose before starting the next taper. It seemed to work for me. There are examples of Dead Slow Nearly Stop (DSNS) plans on the forum.

[Nursing56]

Hi,

Thanks for the reply. I’ve have read quite a bit since last night, and def going to try tapering as suggested on the links given.

I felt the pred at the higher dose put me into a false sense of security as all the pain was gone, I was back to exercising on a daily basis and still working.

I’m now finding with lower dose I am more tired and although still doing most things the pain is back, be it not as bad , but it’s getting to me. Due to abroad next week, and worried things will get worse.

I’ve got to say Im not one for forums to be honest, but genuinely think there is a lot of great info and support on this one.

Thank you

[DorsetLady PMRGCAuk volunteer in reply to Nursing56]

Totally agree about the higher doses of Pred giving false hope as well as false energy - and you aren’t the only one to find that out.

Lower dose you are on is undoubtedly not quite enough [pain] so maybe after flare protocol stick at 4 or 5mg certainly as you are going abroad- travelling in itself can be quite stressful. So even if you don’t think it’s necessary please request special assistance at airport etc… see link [sorry more reading!]

The fatigue is likely to be adrenals struggling as well as too low a dose, so your underlying PMR is complaining.

No reducing for a while… and take extra meds with you on holiday, just in case required.

You may not be a ‘forum’ person, but everyone on here is talking from personal experience, and really know what it’s like, not just think they do…

Take care, and have a lovely holiday

healthunlocked.com/pmrgcauk....

[Hidden in reply to DorsetLady]

I know this is an old thread but I wanted to add my two pennyworth. I am not a 'forum person' either, however as I dipped into the information about this thing that has barged, uninvited, into my life, I realised it was a great support group.

I was going to leave when I had learned enough, and did for a few days but I felt bereft. I need it, and the people who are so supportive.

I've been on forums before and this is very different and totally safe.

[PMRpro Ambassador in reply to Nursing56]

If you are getting a return of symptoms at any dose it is a sign that you are at least bordering on the dose you are looking for: the lowest effective dose. If you are going on holiday - no further reduction and make sure you pack enough pred to be able to deal with a flare if it gets to that. The longer you leave a flare, the harder it is to sort out and you may end up having to go back to a far higher dose in the end. Ordinary painkillers are unlikely to help and a mg or 2 more pred is less risky longterm than loads of OTC painkillers in the hope they will work. Any stress will poke PMR into life - even the nice stress of a holiday.

If you are flying - try to get airport assistance which will save you long walks, standing in queues and unecessary panics. You will arrive feeling much better able to enjoy the holiday you need so much. And beware - if it is anywhere in Europe, the heat is killing at present and the beginning of next week is to be even worse and PMR and pred make it even harder. I know, I live there!!

Have a lovely time - where are you off to?

[Nursing56 in reply to PMRpro]

Thank you for all the advice. It’s very much appreciated. I now have a good understanding of the importance of not reducing to quickly.

I have been a senior nurse in primary care for many years and have never dealt with anyone who had PMR. Interestingly I have now!

I'm going to Costa del Sol next week, will make sure I have lots of sun cream and prednisolone !!

Thanks again

[PMRpro Ambassador in reply to Nursing56]

Just looked - mid 30s in the afternoons which feels like low to mid 40s in the sun. Over 30C by 10am. My granddaughter, young and fit, was in Majorca last week, even they retreated to the aircon! Just don't forget that sunscreen doesn't protect from heatstroke!!!!!

[Nursing56 in reply to PMRpro]

Hi,

Thanks for the info. I don’t usually go abroad at this time of year as I have very fair skin. Got the sun cream and hat!! and pred of course !!

[PMRpro Ambassador in reply to Nursing56]

I live in Italy - I decided to spend July and August here in Scotland this year to escape the heat that is now so common even at altitude where I live. Low 30s day after day is too much. But I hadn't expected something more like March ...

[Nursing56]

Thank you so much

[PMR_sufferer1]

The only thing I would add is when tapering you can feel when it's the right time to drop your dose . It hard to explain but I can just tell.As I have said many times we feel the pain not others like doctors so trust your own judgement. But do not taper too fast and stay on your existing dose longer if needed until your body tells you it's time. It really does tell you. Good luck !

[PMR_sufferer1]

By the way your PMR started exactly as mine so upper thighs first then the shoulders. I went to my doctor pre it moving upwards and was diagnosed with arthritis. It was the physio who said what it actually was within two minutes of talking to her

[Phoebenooby in reply to PMR_sufferer1]

That’s how mine started, got steadily worse, several drs never mentioned PMR and I had never heard of it…. Was given painkillers and advised sciatica and frozen shoulder….. 8 long months before I got steroids after being advised what it was by a member of a vascular team! The almost immediate relief from pred was unbelievable….. now for the hard work!

[byebyebicycle]

I think you've been super fast - I'm 72 and was swimming, cycling and walking most days but PMR caught me and I started taking Pred in Dec 2023 and 9 months later I'm trying to get past 10mg for the 3rd time. But this time I had a frank talk with my GP but armed with the great feedback and information the guys on this blog have supplied. We agreed to scrap the 2.5mg drop and starting from 15mg dropping 1mg per month and when we get to 10mg I will insist on using the shaped taper - e.g. drop 1mg for 2 days the first week, then 3 days he 2nd week etc.. until we get to 9. I hope this approach will get me to 5 mg one day 😁. Without the support I've been given here I really don't know what I would have done. Not out of the woods yet but I've much more hope. many thanks all, byebyebicycle.

[MiniSpec in reply to byebyebicycle]

I would advise you to go much more slowly than you have so far. This isn't a race, and no matter what you do you'll lose against PMR, so learn to be patient and don't keep trying to push the envelope. Your body obviously isn't ready to cope with less than 10mg per day, so accept it, and wait till your body is ready to taper.

I would say that once you reach 10mg per day, use your shaped taper by all means, but make the lower dose 1/2mg below the upper one, not 1mg. Furthermore, expect to stay at each level much longer than you have been, so don't rush to get to 9mg, and accept that this is a chronic disease, and it will decide when it's going to go into recession, not you.

I tried something similar to your 1mg taper when I was at 10mg (a long time ago now) and it caused me to get GCA as well as the existing PMR. This meant going up to 60mg Pred per day. That wasn't a pleasant experience, and many months later, when I got down to 10mg per day again I tried to taper more slowly. However, GCA reared its ugly head again, and once more it was up to massive doses of Pred per day (50mg this time). It took many more months of steadily reducing to get back to 15mg per day.

After that I was very very cautious, and made sure to taper very slowly when I got near 10mg again. Thankfully this time I managed to get below 10mg without getting another bout of GCA, but that was partly because I made sure to only taper 1/2mg every three months or more.

[Nursing56 in reply to MiniSpec]

Thanks for this. Yeh, I think it I’m getting the message that I’m rushing things. I’ve been told by the rheumatologist today to up the dose from 4mg to 5mg, or maybe try methotrexate, of which I am def not keen at this stage.

[PMRpro Ambassador in reply to Nursing56]

If you have got to 5mg on your own - MTX is very unlikely to help any further and is introducing another nasty drug for the sake of it. I wouldn't ...

[DorsetLady PMRGCAuk volunteer in reply to Nursing56]

I’d pass in the MTX unless you really struggle in the next few months to get lower. But once you have this blip under control and employ a slower taper, I’m sure it won’t be required.

[Nursing56 in reply to DorsetLady]

Hi,

so I’m on 4mgs and . Should I go up to 9mgs for two weeks and then try 5mgs or is that to fast?

Thanks

[DorsetLady PMRGCAuk volunteer in reply to Nursing56]

That’s the normal advice for a flare. But you might have to think it through a bit carefully as you will be away during that time [hopefully it won’t affect things]. How long are you away for - and when will the day you are due to drop back down fall - whilst you’re on holiday or back home?

[Nursing56 in reply to DorsetLady]

Hi

I’m going away in the 18th August for one week. I’ve increased the pred from 4mg to 9 mg this morning. Ive had a headache for two days now and the pain in my neck and upper thighs are probably a bit worse. I’m normally a very active, but feel so tired recently. I’m wondering if the headache could be coming from my neck. Hope so!

[DorsetLady PMRGCAuk volunteer in reply to Nursing56]

Okay.. so you will be due to a drop back down whilst you are away. Hopefully you will feel a lot better by then… but just be aware that a few days after a holiday can be a bit wearing so don’t go into “I must get everything back to normal “ mode at the same time as dropping down.

Hope headache clears, and enjoy holiday.

[byebyebicycle in reply to MiniSpec]

Thanks. I now realise through these chat's that it's going to be a much longer road for me than the 2 years my GP first advised. I'm the one putting the brakes on and I'm reckoning on maybe 5 months to get to 10mg, and that is if my body allows it. From 10 down there's no real plan but just to taper slowly. I've time to consider that after I get the experience of what happens in that 5 months and I'll most certainly heed your warning.