Pmr flare

[Rch51020]

Hi everyone, I am 69 and was diagnosed with pmr in 2019,and was given 60mg prednisolone.I tapered to 5mg slowly over the years and felt absolutely fine,fit and well.I saw my consultant last September and he suggested a taper over 5 months,so when I go for my next appointment in March I will be off it altogether,as per only lasts for 2-3 years. I have got down to 3mg but on the 4th February I couldn't get out of bed stiffness in neck shoulders upper arms and hips,and I'm walking as if I've no control over my legs The pain is excruciating.I had bloods done and rang the Secretary who said they were normal.I haven't been out since the 12th as I cannot drive my car,it's too painful to walk,I can't lift my arms to comb my hair ,the symptoms don't leave me until 3pm and then I'm back in bed at 8.30 pm.I have an appointment with my consultant on the 15th March Any advice please.

[PMRpro Ambassador]

You are proof that PMR doesn't only last 2 years - a myth that Prof Sarah Mackie in Leeds is trying to address. There was an article in the charity magazine Newswire recently.

However, whether PMR lasts 2 years, 5 years or 10, to tell you to taper from 5 to zero over 5 months showed a decided lack of understanding of the problems patients face after 4 or 5 years on pred: adrenal function must also be given a chance to reestablish itself and that takes a great deal longer than 5 months.

I do hope you can persuade him that is this the result of his precipitate instruction to reduce the dose and that you need to restart pred.

Have you got some pred in hand? Could you take more in the meantime to be able to function? Have you spoken to your GP to get them onside?

[Rch51020 in reply to PMRpro]

Thank you for the advice.I don't have any spare pred as I only get 28 days supply at a time from Gp. They don't interfere with consultants instructions.

[PMRpro Ambassador in reply to Rch51020]

Something to get sorted out - the consultants might as well be on another planet when we need advice quickly ... At least you can usually speak to a GP within 3 or 4 weeks!

[DorsetLady PMRGCAuk volunteer]

Hi welcome to this forum

Any advice… yes get a Rheumy who understands PMR.

A. PMR doesn’t ‘only last 2-3 years’ for some it might, but certainly not for everybody

B. Trying to taper from 5mg to zero in 5 months is likely to cause a flare - which it has by the sounds of it as you have a return of symptoms, and is also likely to make life very difficult as your adrenals get back to working.

C. Bloods maybe be ‘normal’ but they do have a habit of lagging well behind symptoms, and symptoms are the most important thing to take notice of.

As for starting at 60mg - was GCA suspected? And did you have any sight issues? You have nothing on your profile to indicate that. If not, then it’s an extremely high starting dose.

You need to get your flare back under control - so please seek advice from Rheumy Dept -do you have a helpline number. Or failing, that, then follow advice in this link - otherwise you will only get worse, and you’ll end up requiring even more Pred and for longer-

healthunlocked.com/pmrgcauk...

Alternatively, do you have access to a sensible GP?

[Rch51020 in reply to DorsetLady]

Hi,thank you for replying.No gca wasn't diagnosed,and I didn't have sight problems.The Secretary said he will see me at my appointment even though I said I was struggling.Gp at my surgery don't like to interfere with consultants decision that's why I thought I would post here.

[DorsetLady PMRGCAuk volunteer in reply to Rch51020]

If no GCA then really don’t understand starting dose…. and leaving you for another 3 weeks in the throes of a flare is not good enough.

Do you have enough Pred to follow the protocol in the link I sent you? If so, then in the absence of medical advice, I think you need to follow it.

[Rch51020 in reply to DorsetLady]

I read the link which is very informative for me,I don't have spare pred as I only get 28 days supply at a time from my gp.I will have to ring the Secretary tomorrow as I feel I can't stand feeling like this any longer Thanks for the advice

[DorsetLady PMRGCAuk volunteer in reply to Rch51020]

Did reply on other thread - but for completeness, this is what I said -

Hope you can… it’s difficult when you get prescription from one source and the tapering regime from another.

[Viveka]

So sorry to hear.

It is difficult, but I think you need to call the rheumatology helpline/secretary again and explain the extent of how much you are suffering (with absolutely classic PMR symptoms) and the impact on your life, and that you need to be allowed to increase pred before your next appointment. Say you're going to put your situation in writing. Make them sit up. Use the explanation that if a temporary increase works, it shows that PMR is still active. They will have replied to your first request without giving it much thought. They need to think.

Second line of defence, ring GP and pressure them for at least a telephone appointment to explain how you are feeling. They may not want to interfere with the consultant but it is up to them whether they do or not - they have to go with the patient's presenting needs, and in many cases GPs manage PMR.

Once you are settled again, change your rheumy or get away from the whole department.

Good luck.

[GettingThere22]

so sorry. Especially sorry so few doctors understand PMR. It can last for much longer than 2-3 year. Sorry again for that news! You need to go back up to 5mgs again (if not higher) and stay there for quite a while. If you again try to taper do it much slower. Dorset Lady has a sensible regime for this.

[Rch51020 in reply to GettingThere22]

Thank you for replying,yes I have read Dorset lady's regime she as reassured me that it is my per flare and what she says is very informative.I have rung the Secretary this morning and she said the consultant will talk to me on my appt day which is the 12th March,and there is no other appts ,I've told her how I feel but I suppose she doesn't know what it feels like. Anyway I have just rung surgery and have an appt with GP this afternoon. Ill keep in touch.

[AngusMacbeth]

Writing from the US so I don’t know anything about the UK’s medical system, but I will say that given the seriousness of your flare symptoms I would suggest you go to the ER if you were in the US given the unsatisfactory response from your regular doctors. Hopefully you have that sort of option in the UK as you should not have to suffer unnecessarily until March 12th. Good luck to you….