Hi fellow sufferers! I'm trying to get a idea of the real time frame of polymyalgia!

[Barney546]

Hi im 65 I was diagnosed in 2015 with atypical polymyalgia starting on 15mg inflammation soon came under control, reduced down to 5mg within 6 mths. Have continued trying to taper down using dead slow method just keep getting flairs, at present I'm on 4.5 mg. I have avoided any other medication ie methotrexate because of possible side effects! I'm wondering if I should give it a go (methotrexate ) . Interested to know how many of you are long terms sufferers with any advice ?

[SnazzyD]

Hello, a bit of detail on these flares would help those in the know. What do your flares look like? Do they come on suddenly or creep on and are the symptoms always the same? Do you go back up to the same dose each time and how long do you stay there before reducing? Do you reduce to the same target each time?

[PMRpro Ambassador]

"Real time frame"????? How long is a piece of string? I'm going on 20 years since the first symptoms appeared. Is it still there or do I need pred for unrelated problems that can't be definitively identified but are very like PMR? Some were dealt with by Actemra but even it isn't 100% an answer to GCA and, therefore, also probably PMR.

Methotrexate was an utter nightmare for me - I couldn't function at all because of the overwhelming fatigue. I think you have to try it know one way or the other - but it is not worth taking if it makes you feel less well than you do on just pred and personally if you are at 4,5mg on your own, nothing would induce me to take a so-called steroid sparer that isn't guaranteed to get you off pred.

[Barney546 in reply to PMRpro]

Thanks for your reply my flare usually after a week or so after a .5 reduction which takes me 4 weeks to complete. I get pain first between ribs then both hips and neck these are pretty consistent when i have a flare . I have put up with these in the past but stayed on the lower dose and the symptoms just get worse. If this happens I increase by 5mg which usually works. If I reduce and just get a bit achy and tired I stick with it which has worked and got down to 2.5mg which I was OK for 6mths. After 8years I think maybe I need to try something different. However touch wood I don't seem to suffer with side effects of pred on my current dose of 4.5 . And maybe I just have to accept I've got pred longer term. Thanks for your input.

[DorsetLady PMRGCAuk volunteer in reply to Barney546]

I don’t think I’d be adding in another drug if I was okay at 4.5mg… Yes it is slightly higher than most doctors would like you to be on long term - 2.5-3mg would certainly be better, but if it’s not achievable for you it’s not achievable. But you did get to 2.5mg previously - so what happened then to upset the apple cart?

Once you’re settled again, may try my longer taper [7 weeks] or even ultra long version [14 weeks] - in this link -

healthunlocked.com/pmrgcauk...

[Barney546 in reply to DorsetLady]

Thank you Dorsetlady I think it I upset the apple cart when I was on 2.5mg by doing to much physical stuff! after hearing from you and pro I've come to the conclusion to stick to just the pred see if I can get down to 2.5mg ( slowly) and realise my limitations and not push it physicaly. Thank you both again for your input. And have a great Christmas

[Bluey-1 in reply to Barney546]

‘Realise limitations and not push it physically’

I think this message is important and one I’ve followed from advice on this forum. I’ve also paused for a few months on a couple of tapers that have coincided with other issues. The mantra don’t change more than one thing has been useful when I’ve had to add other meds due to a TIA/Afib episode and the one cold/virus I’ve had since diagnosis. Regular blood tests to monitor inflammation has also helped.

[DorsetLady PMRGCAuk volunteer in reply to Barney546]

It is all too easy to try and too much when you get to lower doses -you can see the “end” and maybe take your eye off the ball.

But you seem to have sussed out what to do-so good luck. Happy Christmas to you too.

[PMRpro Ambassador in reply to DorsetLady]

"you can see the “end”"

Except what you see is a horizon - all too often, there's a lot of ocean beyond that!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Very true... and if you're a flat earth believer you fall off into the abyss! 😲

[PMRpro Ambassador in reply to DorsetLady]

How apposite for PMR ...

[PMRpro Ambassador in reply to Barney546]

Paradoxically, quite often stopping trying to reduce the dose results in being able to get lower - even the stress of worrying about getting to a lower dose can be enough to make it difficult! And you never are aiming relentlessly to zero, whatever some doctors may think: you are looking for the lowest effective dose. If that is under 5mg, most good rheumies accept that even longer term. It is very common for patients here to remain on such a dose for years - the desperation to get off pred altogether seems a very English-speaking preoccupation.

[Thirkelly in reply to PMRpro]

Thank you - that's a really useful reminder for me!

[KASHMIRI1]

Good morning I take Meth for GCA and havent had problems apart from occasional nausea

I was told to stop it if I get a bad cough.

[Janet57]

I have learned that patience is the key. I was diagnosed in 2013. I’m down to 3mg. I tried to ‘hurry’ things along and then carried on working in a high pressured senior job for too long. It is my belief these halted my progress with this disease. I’m doing the DSNS method or slower if I feel like it touch wood for the last 18 months things have been stable. The rheumatologist is happy with my approach. It’s not a relentless race to zero. It’s taking enough prednisolone to keep the inflammation at bay and in the hope it will retreat completely. It may not. Apart from a bad knee that needs replacing I have a good life, I enjoy life, am lucky enough to travel widely and ave fun in my retirement. Pacing yourself and being patient are my new mantras. Good luck.

[Rose54]

Hi

I too was diagnosed in 2015 get down to seven then back up higher.

At present on 7.5

[Karenjaninaz in reply to Rose54]

Rose, sounds just like me.

[S4ndy]

I have had PMR and been on prednisolone since 2016. I was started at 30mg and then kept flaring about 9mg. Eventually I got down to 5mg very slowly and my Rheumatologist suggested that I stay there as a maintenance dose. I have been at that level for about 3 years now with no flares. My bloods do still show inflammation but my doctors think that may well be arthritis and other conditions contributing to that. So I am not trying to reduce any more. My new GP said that in her opinion this dose was fine and it's seen me through some pretty stressful life events without a flare. So I am in no rush to change anything. This is such a personal illness, everyone responds differently and so I've learnt to accept the challenges and go with the flow x

[Mazxstitch]

I am having more success in tapering by reducing a quarter of a mg over a 5 week period. A 2.5mg tablet cut in half gives you 1.25mg. I have cut 1mg tablets in half to get .5mg.Stay on the dosage longer than 5 weeks if need be.

[Wouldlovetorun]

It has been very helpful reading this thread. Some times we just need to hear the same things repeated time and again. Not trying to do too much is one of my failings and I don't seem to learn.It is so good to read your question and the replies.

Best wishes

[Alebeau]

You have made far more progress than I have - still at 12 mg after 5 years.

I only reduce by .5 mg when I feel good and my ESR and CRP are behaving. Monthly blood work is essential for me.

If I ever make it down to the single digits I'll be a happy camper.

[tangocharlie]

The key thing I have learned in my 11 years of having PMR is that you can only reduce if your body is ready for it. The whole point of tapering is to find the lowest effective dose that still manages inflammation. This is rarely a straight line and there will be ups and downs. Reducing too fast or too soon only leads to problems.