Flare - how much to increase by and for how long? - PMRGCAuk

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Flare - how much to increase by and for how long?

SusyTe profile image
31 Replies

Hello All. I am having a pain flare in my hips - making me cry out. I tapered to 10 mg five weeks ago and have been just about managing on that, with some pain in my shoulders and legs occasionally. But my 91 year old father had a fall this week and broke a rib and then got a chest infection so I have been looking after him and in the last day or so my hip pain has flared up - haven't had that since I first developed PMR. I took my 10 mg yesterday morning but by last night was in a lot of pain in the hips so took an extra 1 mg. Was in pain through the night and am in a lot of pain this morning. Working from home today but have to go into the office tomorrow and Wednesday. I was thinking of maybe going up to 12 mg for a couple of days to try to get things back under control - does that sound sensible? I would rather not go up to any more as it has taken me so long to get to 10 mg. Any advice gratefully received. I am stopping work at the end of this month and am looking forward to getting more rest - hoping that will help.

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SusyTe profile image
SusyTe
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31 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi SusyTe,

You may find that 12mg is enough, but if it doesn't resolve things significantly within a few days then you may need to go up to 15mg. I appreciate you don't want to go higher, but you need to get things back in control.

If you stay at 15mg for a week, then you should be able to drop back down to 12mg easily. I wouldn't go back to 10mg straight away - from your comments that didn't sound enough.

Good luck

SusyTe profile image
SusyTe in reply to DorsetLady

Thank you, Dorset Lady. Will give 12 mg a go for a couple of days but go back up to 15 mg if it doesn't help then down to 12 mg after a week. Quite demoralised - it has taken me a year to get down from 15 to 10 mg.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to SusyTe

Hi,

Yes I can quite imagine you are. But as I've said before, and many others as well, you need as much Pred as you need. It might have taken you longer to get from a to b than it does someone else, but that's not the point. If the PMR is still active, then you need the correct amount of Pred to control things, and certainly the recent events wouldn't have helped - but unfortunately that's life!

Take care.

SusyTe profile image
SusyTe in reply to DorsetLady

Thanks, DL - I know you are right. I think I am feeling over-emotional because of the pain, my father and being made redundant. I know it is the right thing so I can concentrate on my health and also my father, but it also feels like I have lost yet another part of myself because of the PMR. Hey ho - could be worse, as we all know! Will rest up today and look after myself. Thank you for listening and always giving your support and advice - you are wonderful. x

Sandy1947 profile image
Sandy1947 in reply to SusyTe

My heart goes out to you with all the variables that contribute to increased stress, pain and disappointment regarding Pred. increase. Taking care of an elderly parent is very sad but rewarding. My sister and I just returned from taking care of our 94 yr old mom. Watching her decline is bittersweet. Time spent with her is not what it was but it's still time nonetheless. I experienced more pain when I was there but improved. PMR is correlated to life events so we must be extra sensitive to giving ourselves what we need. I napped every afternoon which I never do at home.

Think of your increased Pred dose as a slight detour on this roller ride called PMR. We seek linear improvement but learn it doesn't exist. Let us know how you do.

SusyTe profile image
SusyTe in reply to Sandy1947

Thank you for your kind and wise words, Sandy. My father passed away suddenly last night so I am in deep shock right now. Need to get packed and get up to the Midlands asap. Thank you to all on here for the love and support you give. X

Sandy1947 profile image
Sandy1947 in reply to SusyTe

So sorry to learn of your father's passing. Please remember all the good times to keep his memory alive.

SusyTe profile image
SusyTe in reply to Sandy1947

Will try, Sandy. Thank you. X

Sandy1947 profile image
Sandy1947 in reply to SusyTe

Stay in touch a long the way. My thoughts and prayers are with you.

Perkey profile image
Perkey in reply to SusyTe

How very sad for you my thoughts are with you life can be so cruel and all at the wrong time I do hope you start to feel better and the preds do their job.

SusyTe profile image
SusyTe in reply to Perkey

Thank you for your kindness.

PMRpro profile image
PMRproAmbassador in reply to SusyTe

Oh Suzy - so sorry to hear that. Hugs from a distance.

SusyTe profile image
SusyTe in reply to PMRpro

Thank you so much.

Rugger profile image
Rugger in reply to SusyTe

My thoughts are with you SusyTe. My father was 91 when he died 11 years ago. I am comforted by the fact that he had a good, long life and hope that you will be too, one day.

I do hope you will soon get advice on how to manage the PMR pain. x

SusyTe profile image
SusyTe in reply to Rugger

Thank you, Rugger. Daddy was 91 too. Sorry for your loss. We will get through this. Dr H has told me to take 20 mg for a week and then I have an appt with him.

Polywotsit profile image
PolywotsitPMRGCAuk team member in reply to SusyTe

Dear Susy ,

I am sorry I didn't pick this post up earlier. And very sorry to read about your father. I would have said " Please try painkillers for a few days before upping your steroids. Please don't increase your steroids without discussing with your doctor first, especially when you are still on a fairly substantial dose.

I realise that this goes against what others on the forum advocate, i.e self management of the dose, but we don't know your medical history and once you are up it can take a long time to get down again. But you are going through a hard time at the moment with many changes, so do look after yourself.

Regards

Kate

SusyTe profile image
SusyTe in reply to Polywotsit

Dear Kate, thank you for responding - much appreciated. I did take painkillers and then waited until I had heard from Dr Hughes who told me to go up to 20 mg for a week then back down to 15 mg. It is helping but I think I may have bursitis in one hip now. I am seeing Dr H when I get back home so will ask him about that. I just want to get to the 28th for my father's funeral and I also stop working on that day - then I can really take care of myself. Thank you again.

optimist-ok profile image
optimist-ok

I am on a maintenance dose of 5mg prednisolone but have been told that, if need be, I could increase by up to 20mg. My GP has told me that if on the higher dose for a short time the decreasing could be at a faster rate. It might be worth consulting your GP or Consultant re. this. Best wishes for a less painful time.

SusyTe profile image
SusyTe in reply to optimist-ok

Thank you, Optimist. I just feel so depressed by the return of the hip pain and having to increase again. And of course stressed and worried about my father.

PMRpro profile image
PMRproAmbassador in reply to SusyTe

And that is why you are flaring - there really isn't any way round it, if you don't taken enough pred to manage the inflammation you will run the risk of it building up into a real good going flare and then you may need to go even high. In the long run, nipping it in the bud now will probably save a lot of pain and a lot of pred.

SusyTe profile image
SusyTe in reply to PMRpro

Thanks, PMRpro. I have had to go up to 15 mg now as 12 mg wasn't touching it - could hardly walk and kept yelling every time I moved. It is slowly easing off now, thank goodness. I will stay on 15 mg for this week, I think, then try to taper down to 12 mg. Thank you for being so kind and understanding. You and DL are total gems. I am seeing Dr H in a couple of weeks and I know he was hoping that I would have tapered more by then but so be it - I can't cope with being in this much pain.

Kay_kay profile image
Kay_kay in reply to SusyTe

Hi Susyte, just wanted to say how sorry and sympathetic I am. I lost my father in June and have to keep going back and forth on long journeys on M6 to the midlands as my mother very poorly with dementia so quite similar. I'm sure the strains of the last year, and the same with many people, contributed to getting PMR. I'm feeling too low to go on this site much and didn't get replies last time so not sure if I'm posting correctly but I'm sure we will get there in the end. It's just hard coping when you are run down in pain yourself but DL and others offer lots of good advice and everyone seems to get to a low dose or remission in the end so I'm sure you will. We are lucky this day and age to have pred which our forefathers didn't poor things (I heard it goes back to the Vikings and I am certainly one of those as traced ancestry back to Norman times!). Wishing you very best wishes and hope you have family and friends for support at this difficult time x

SusyTe profile image
SusyTe in reply to Kay_kay

Thank you, Kay. I am so sorry about your father and also your mother. It is heartbreaking.I come from Solihull originally and have been up and down every weekend. I am also of Viking descent. I feel for you and send you big hugs xx

AvisF profile image
AvisF in reply to SusyTe

Thinking of you at this sad time. I do hope that increasing the pred will soon bring you relief from the hip pain. It's such a difficult time for you but rest assured that all those reading your post will be sending you warm wishes.

SusyTe profile image
SusyTe in reply to AvisF

Thank you, Avis - very kind of you. X

Michdonn profile image
Michdonn

Hi SusyTe, everyone and every individual case is different, when I flare I up my dosage not from what I am tapering off, but the level before that. Stay at the level till I am stable and pain free. Listen to your body! I also will not reduce my dosage unless I am PMR pain free. That is what works for me. Think positive!

SusyTe profile image
SusyTe

Hi again. Sorry to bother you all but I am waiting for Dr H's PA to call me back as I am now having a big flare - presume because of shock and grief - and I thought I would ask the Oracle in the meantime. I took 15 mg at 3.30 am as was in so much pain I couldn't stand it, and now it is 10.00 am and I can't move without crying out. I have so much to do today sorting out my father's affairs and I can't get up and out with this pain. I don't know what to do - take more Pred and if so how much? I have never been above 15 mg before. Any advice gratefully received.

PMRpro profile image
PMRproAmbassador in reply to SusyTe

Are you sure it is "just" PMR causing the pain? Tension could cause muscles to spasm and that can cause excruciating pain (personal experience!). If it were PMR then you should have got a fair bit of relief after 6 hours. But you could try another 5mg - a one-off won't hurt you.

Is there no-one who can help? What must you do?

SusyTe profile image
SusyTe in reply to PMRpro

Thank you, PMRpro. It does feel like the pain I had at the start of PMR. I did get some relief and got some sleep but then it flared up again. Have taken the 20 mg that Dr H suggested now and managed to get out of bed and had a warm bath which has helped. My sister and brother have arrived and we will sort out who does what. I will have to take a back seat today. Will stay on 20 mg for a week and then have an appt with Dr H. Thank you for your care and kindness - very much appreciated.

PMRpro profile image
PMRproAmbassador in reply to SusyTe

There is a lot that can be done by phone/email these days in terms of notifying people. Do hope it all works out fairly well - it is a difficult job.

SusyTe profile image
SusyTe in reply to PMRpro

Thank you. We have to go to the Chapel Of Rest at the hospital where he is and also to his home to empty the full fridge. We are going back home to Surrey on Sunday so have limited time. It is very difficult.

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