Symptoms recurring on 3.5 pred.

[simps999]

I have had PMR for two years now and struggled with flares but felt OK and more active again at 4mg so stayed on that for 7 weeks . Since going to 3.5 I have had a recurrence of gluteal pain and neck and shoulders pain. Manageable but definitely there. It's been 8 days since reducing. My question is , do I go up again and follow the advice on treating a flare or persevere on the same dose and hope pains may go away ? Optimistic I know but I was so hoping I'd cracked it !

The other issue is my GP referred me to a rheumatologist in April. I have followed it up and haven't even got in the system yet . It was sent to the MSK group and then referred on and was rejected for some reason. It's now been referred to another hopsital and I have to wait ! The system is broken !

Frustrated 😠

Comments please

[piglette]

I have found from bitter experience if you have pain problems from the PMR, don’t try and persevere, PMR always wins, just go back to the last dose where you were comfortable and try again when you feel you are ready to.

[DorsetLady PMRGCAuk volunteer]

You may have answered yourself - but felt OK and more active again at 4mg so stayed on that for 7 weeks .

Maybe you overdid it - or are still overdoing it at 3.5mg. I'd be inclined to look at what you are doing, and maybe return to 4mg.

Many would be very happy to be that low after 2 years - so don't push too hard and rock the boat. It's a lot harder to reduce at lower doses than many realise... 😊

[PMRpro Ambassador]

No-one beats PMR, you have to accommodate it! Go back to the dose where you were comfortable - if just doing that is enough, all well and good. But if not, use the flare protocol to have a clear out, But stick at 4mg - it is a good low dose and you will get lower. Just not just yet.

[simps999]

Thank you for your replies. I get it and will have to learn to be more patient and yes Sue, I probably have been overdoing it the past few weeks. Appreciate your prompt replies .

Won't hold my breath fir a rheumatologist appointment. Your advice and support is probably all I need anyway at this stage.

[alangg]

If your GP is happy to prescribe Pred at the dose that you think you need to control your PMR, then I wouldn't 'rock the boat' by getting a Rheumy involved. I was referred by my GP but the reply from Rheumatology came back as 'text book case, responding to treatment, no need to see him'. And there are many posts on this forum bemoaning Rheumies who 'take over' the treatment which is later regretted by the patient.

[simps999 in reply to alangg]

Thank you very much for your interesting response.

[PMR_sufferer1]

So if your down to under 4 your doing well but don't rush it. I have moments when I think I need more Pred but after a few days feel better without increasing my pred dosage. Therefore just stay on your dose for a few days to see if things improve is my advise Ups and downs are normal.on this journey. Good luck

[simps999 in reply to PMR_sufferer1]

Thank you for your reply. I have had similar when reducing at other doses. This time I have more pains for longer so think I will need to increase ,sadly.

[PMRnewbie2017]

Only you will know how inflamed you feel. I always get sore in weeks 2 and 3 of a 5-6week taper but after 7 years of this I'm more able to recognise the difference between steroid withdrawal, insufficient Pred for my disease activity and a flare.Something that works for me if not a true flare at doses below 4mg is:

2 days at 5mg, 2 days at 4.5mg etc and stop at the dose where I was pre taper.

To be at 4mg after 2 years is exceptional, honestly. I'm at 2.5 again, fourth time, and got to 1mg once.

[simps999]

Thank you for your advice. You have clearly had to be very patient over seven years. I appreciate your response.