I was doing so well.... and then... a flare

[SusieQQ]

Advice please on what mg to take to manage a flare 😔

Diagnosed in July 2015 (eventually, after 8 months of agony), I started on 20mg prednisolone. Using DSNS, I have slowly reduced to 3.5mg - but have recently started waking up in pain again and finding it painful to turn over in bed and get up. The pain is more widespread than in 2015.....ribs, back, knees, neck, shoulders.

My question is - how many mg should I now take to manage the flare? And...do I need new

medical advice? I have little confidence in my GP surgery so would seek advice from a private rheumy if necessary - even though it goes against all of my principles.

So good knowing I will get sound advice from fab people in the PMRGCAuk Community.

or turn over in bed - ribs, neck, back, thighs and knees - where not, really.

[SheffieldJane]

The advice is to go back to the last dose you were comfortable at. It is early days, in my experience, to be at such a low dose in under two years. If you were doing ok at 5 mgs for instance try that. You do sound as if you are in the grips of a big flare though and may have to creep up more, even back to the beginning in some cases. Can you not get a referral to a Rheumatologist under the NHS. The time it took to diagnose you alone warrants the advice from a specialist. Where do you live? Someone may be able to recommend a good one for PMR. Mine was recommended on here and she’s great and a leader in the field of GCA and PMR. If you are near Leeds PM me and I can give you her contact details.

[HeronNS]

There are two common ways to approach this. The first way is to return to the last dose where you felt well and remain there, providing the dose still works, for several weeks before attempting a very small taper again. The other is to to increase the dose by 5 mg and stay there for a few days, then reduce fairly quickly to the level where you last felt well (not the dose where you flared). I actually had experience of both these methods last year. First I went back to my good old dose. But I tried to reduce again too quickly and ended up having to take the extra 5 mg for about six days. Then I spent a few days at 1 mg steps down until I was a little above my last good dose, because I didn't think that dose was good any more after my stupidity. Then I started the dead slow method again, which had served me well. Still using dead slow, and have still not got back to the dose where I was before the flare. I'd been at 1.5 and wasn't ready to go to 1 mg. Now I'm reducing to 2.5 having been briefly as high as 7. But I'm feeling good now. I think this whole episode has set me back by about a year.

[SusieQQ in reply to HeronNS]

Thanks HeronNS.

Will take your advice.

[Patience47]

Susie, sorry for all the pain you're going through. I believe the rule is to increase your pred by 5 MG . I too had much more pain after my first flare than I had in the beginning.

Try increasing your pred to 8.5 MG. Others will come along and give you more guidance that are far wiser.

Best of luck, Edward

[SusieQQ in reply to Patience47]

Thanks, Edward.

Good advice that will be acted upon.

[Celtic PMRGCAuk volunteer]

Oh dear, Susie, that sounds like a fairly full blown flare, and I would think you are going to need at least a 5mg increase to ensure you get on top of it. You need to do this quickly before the inflammation really runs away, needing a much higher dose to get it under control. I experienced something very similar when I was at 4mg, almost back to being bedbound, and the following is how it was handled under the guidance of my excellent rheumy:

Increased to 10mg for 2 weeks, then 7.5mg for 2 weeks, then alternate days of 7.5 and 5mgs for 2 weeks. Once back at 5mg, if you feel fine, then it might be wise to remain there for a good month or two to ensure that you have really stabilised.

This is just an example of what worked for me, and I thought something along those lines might just help you - I do hope so.

Don't forget to have loads of rest to give the extra steroids every chance to do their job.

[polymy]

Hi Susie,

This happened to me at 3.5mg a few weeks ago. My lovely doctor increased my pred to 10mg for 2 days then 7.5mg for 4 days then down to 5mg for 3 weeks then down to 4.5mg and reduce from there. It has worked well. Now down to 4mg. 3.5 just seemed a step too far at the time.

Liz.

[SusieQQ in reply to polymy]

Thanks, Liz. Great advice especially as your pred doses are similar to mine.

Susie

[lucy65]

Thanks for asking this question Susie and for all the replies. I've not been in here for ages as I was doing so well. 2 years since diagnosis and reduced from 15 down to 2.5 and alternating with 1.25. I've been going really slow but think I've got impatient towards the 'end' and thinking I would reduce and find it had gone, but I'm finding it is still there and for the first time realising I'm going to need to increase my dose. Following the advice here I think i might increase by 5 for a few days and reduce again slowly from there. Hope you manage to get your flare under control soon too Susie.

[Sandy1947]

Hope you feel better!😀

[PMRpro Ambassador]

Superb advice already so I won't add to it!

The only thing to remember now is that you aren't reducing relentlessly to zero - you have found your Holy Grail: the lowest dose that managed the symptoms well. And by the sound of things it will be 5mg or less by the time you have sorted it out. A really low dose. So stick there for a few months if your GP will let you - on the grounds your adrenal glands now have to catch up. Our favourite southern UK rheumy likes to keep people at 5mg for months before continuing the reduction - and it seems to work.

If your GP is willing - I wouldn't bother with a referral at present. You might be even lower before you get an appointment at the current NHS performance and you MIGHT even end up with someone who is less laidback about the reduction. Even privately!