Advice needed to stop flair fast.: Hello all you wise... - NRAS

NRAS

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Advice needed to stop flair fast.

Loyd profile image

Hello all you wise ones. (71 year old female 3 years of PMR) Recently got down to 3 and a half mg pred tapering very slowly from 30mg. Flair started and got good advice on here to try going up to 5mg to see if the flair could be caught. Initially it did help a bit but now 2 weeks later getting so painful over shoulders neck and arms again. I cannot bear the thought of going back up to 30mg again which I did on doctors advice the last flair I had over a year ago (dreadful side effects!).

My question is, can I try going up to 10mg for say 4/5 days to try to cure the flair and drop straight back to 5mg and stay there for a few months before trying again?

Any advice gratefully received.

21 Replies

You should speak with your doctors Loyd, we can’t advise on what you should take. Give them a call today and don’t just go back onto 10 mg as you’ve done so well tapering. If you don’t let your doctors know then they’ll assume all is ok and it’s clearly not. Let us know how you go 🤗

Loyd profile image
Loyd in reply to KittyJ

Thanks for that Kitty. Good advice I’m sure. However I did consider that but the last time I tried to get a telephone appointment (they don’t do face to face any more) it was a five week wait and I worry the flair will have caught hold by then.

KittyJ profile image
KittyJ in reply to Loyd

I didn’t mean to get an appointment, but to ask their advice on what you should do. We can’t give medical advice here.

Loyd profile image
Loyd in reply to KittyJ

Thank you I’ll ask the resectionist to ask someone. Many thanks.

Well done on reducing your pred, though the 3.5mg seems that step too far. The advice is medical unfortunately so you really do need to ask your GP or Rheumy team I’m afraid. I'm on long term pred, but have RD & take other meds, & have only recently increased the dose on the advice of a Rheumy. I have in the past been given the ok to increase the dose as needed, maybe this could be arranged with yours, have a proper plan given that dampening down of PMR is pred dependent.

I hope things improve soon for you.

Loyd profile image
Loyd in reply to nomoreheels

Many thanks for that Nomoreheels. I hope I can get a good plan sorted soon too.

nomoreheels profile image
nomoreheels in reply to Loyd

Have you asked on the HU PMR site? Maybe they will be of more accurate help.

Loyd profile image
Loyd in reply to nomoreheels

Thank you I’ll try that now. 👍

We’re not Drs.You really need to speak to your GP or if this is difficult,ring 111.

They have access to medical advice.

It may take a while to sort out.

It’s better if you write down what you want to say,it helps me.

I’ve just read that you have to wait a long time for appointments,so 111 sounds a better option.

Loyd profile image
Loyd in reply to Oshgosh

Thanks for your reply Oshkosh. I’ll try that if I get nowhere with the Doctor.

If you ever find a way of stopping a flare fast , let us know and we will patent it. We could make a fortune. 😜

Loyd profile image
Loyd in reply to Wobbies

Haha I know!!

Sorry we can't help Loyd. You need medical advice. I hope you get your answer soon.

Contact your rheumatology team. We are not doctors and while we can offer support, the best advice will be from your own team. Either phone them or email. Hope you get sorted soon

Thanks everybody I’m calling the receptionist today. Fingers crossed.🤞

Don’t mess with Pred…go back to your rheumy team….some people can up & down their dose....but it sounds as if you need professional advice.If you do the wrong thing you may regret it.

I know it’s tempting….but ask your rheumy nurse.

Loyd profile image
Loyd in reply to AgedCrone

Thanks agedcrone - I now have an appointment to get my bloods done on Friday. I thank everyone who has taken the time to reply - so kind. XX

Couple of questions, are you on any other treament to control your condition?Have you got a rheumatologist and team?

You'll find those of us being treated by rheumatologist are calling to speak to specialist nurse for advise about such things, that way not left for too long to get a solution.

Loyd profile image
Loyd in reply to Happy5

Thanks for your reply Happy. I’ve never been to a rheumatologist. I am going for blood tests tomorrow at the doctors so fingers crossed.

Happy5 profile image
Happy5 in reply to Loyd

So how did it go? Know you'll have to wait for the result, but wondered if any other feed back ?

Loyd profile image
Loyd in reply to Happy5

Thanks for asking. I got my bloods taken and now waiting to speak to a doctor - she’s calling between 9.00am and 11.00am on Thursday. I’m now in full flair mode and can hardly move. I have a sneaky feeling I should just have gone up to 15mg to get the flair under control before it went crazy!Hopefully it will all get sorted. Terrified of having to go up to 30mg again like last time to get it under control. If I get down to 5mg again I’ve decided I’m staying there for years!

Thanks again for remembering me. XX

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