Flare up : Hi, having a flare up t present. Been... - PMRGCAuk

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Flare up

mariandrakeford52 profile image

Hi, having a flare up t present. Been taking pred since Nov started 20 mg saw GP last week who suggested 10-8 and like many of you quite rightly stated the reduction was too drastic. Put myself back up first to 9 mg and 10 yesterday not having much relief at present with my neck and shoulders. Took my preds through the night so hopefully some relief soon. Any suggestions would be gratefully received

Marian

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mariandrakeford52
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15 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

If things don't improve on 10mg, and don't think they will much, then think you maybe need to go to 15mg. Not what you want to hear I know, but after your GP's action it was almost inevitable.

If you stabilise at 15mg stay there for at least a couple of weeks, maybe more, it's up to you. Then you may be able to reduce by 2.5mg to 12.5mg, if okay stay for four weeks then reduce again - 2.5mg may be okay, but with your recent problems maybe 1mg would be a safer option.

Certainly once you successfully get to 10mg reduce by 1mg at the most.

If your GP objects, just tell him, politely, that his way didn't work, so you're going to try it your way.

mariandrakeford52 profile image
mariandrakeford52 in reply toDorsetLady

Thanks Dorset lady I really appreciate your response. Spoke to the pharmacist this morning who advised taking Ibuprofen also during this flare up. Let's see...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply tomariandrakeford52

Hi again,

Just go a bit careful with the Ibuprofen, it's not really recommended alongside Pred normally. Both can affect your stomach, so don't take it long term or maximum daily dose. Having said that I did use the gel sparingly when on lower doses of Pred for arthritic knee, and I never had a problem, but then I was also on a PPI, are you? Omeprazole or suchlike.

Hopefully the increase of Pred, whatever you decide, sorts out the problem, and you don't need anything else.

Some days it seems you just can't win doesn't it? Mind you I'd like to come second sometimes!

Take care.

mariandrakeford52 profile image
mariandrakeford52 in reply toDorsetLady

Hi not going to take anymore of Ibuprofen took some early today and hasn't done anything for me. Going to go up to 15 mg tomorrow if I don't find ease

piglette profile image
piglette in reply tomariandrakeford52

Hi Marian, sorry to hear that you had an over enthusiastic GP. Are you taking Ibuprofen for a pain other than PMR. It is just that it is pretty useless for PMR where pred is the only thing that really helps. As Dorset Lady says if you still have pain go up to 15mg and wait until you feel stable then try a lower reduction. Also as she says don't let the GP pressure you to reduce too much.

Nannie-C profile image
Nannie-C in reply tomariandrakeford52

Pharmacist should know better than advise ibuprofen or similar with steroids

PMRpro profile image
PMRproAmbassador in reply toNannie-C

So should doctors - but they don't.

Stroppymoo profile image
Stroppymoo in reply toNannie-C

paracetamol, couple of days to get into blood stream helps.

Yes thanks Piglette going to go up to 15 tomorrow if no ease. Don't understand came down to 5mg back in sep with no pain. Then GP took me off altogether to check if my bloods would come down. But of course the pain came back and bloods only lowered slightly!!

Carolsos profile image
Carolsos in reply tomariandrakeford52

Doctor's don't know everything, you really have to take it steady when coming off steroids and very slowly! As has said from someone else stay on a dose that feels better for you and come down maybe 1mg at a time. And stay on said amount for a good few weeks. I cannot believe the doctor took you off them completely??

I was told to come off steroids and I was on only 7.5 for 2 years. I managed to get down to 1mg with difficulty and could not move or go to work and the consultant says to go back up to 2.5mg and I can stay on that dose forever. Good luck and go carefully.

Carol

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

What a plonker! Sorry.

Obviously has very little experience of PMR. His action may work with other illnesses, but not this one.

Think you need to take control yourself.

Yes I think so !! Thanks for your support

PMRpro profile image
PMRproAmbassador in reply tomariandrakeford52

It does often happen that if someone goes too low and a flares results (which it will) then it is difficult to get the pain under control again. You can't mess about with PMR and pred dose - if a doctor decides it is PMR then they have to be willing to go the whole hog with pred.

Patience_1 profile image
Patience_1

Hello Marian, sounds like you have an uphill struggle to educate your gp!

I would agree with the others about going up to 15mg. I had to do the same to get a flare under control, and though it felt like such a backward step (taking me back to my starting dose), I quickly felt better (whereas creeping up with the doses hadn't worked, so realised it was necessary. I'm now trying to reduce in a very gentle way and will aim to take no more than 0.5mg drops when I get to 12.5mg. I, too, went along with my gp's formula - now I know better and aim to do it my way. Only we know how our bodies feel!

Good luck

Thanks all just got up through night and have taken 15 mg hoping for a better day.! Onwards and upwards as they say. Going to listen to my body from now on and start being in control

Marian

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