P M R ?

[Maur1]

I was diagnosed with GCA in March 2016. After a rocky ride with a few flares I came off Prednisolone on 10 August this year. From 5mg onwards I reduced Prednisolone using the dead slow taper and only reduced by 0.25mg at a time. That took 3 years to reduce from 5mg to zero and I was feeling great. Three weeks ago I started to feel pain in both shoulders, worse first thing in the morning. I have also felt pain in both upper arms, behind knees and sometimes on thighs. I am now worried I may have PMR. I had a hip replacement on 27 July. I would be grateful for any advice.

[DorsetLady PMRGCAuk volunteer]

Oh, that’s a bit of a bu&&rr, but does sound a suspiciously like PMR ..it may have been building up anyway since you stopped Pred and your operation was the final nudge…

You do need medical advice -but do you have any Pred remaining to trial it and see if it helps. Even a small dose -say 2 or 2.5mg might be enough to get things back control..but have you tried ordinary painkillers to see if it’s something else.

Try one or the other, but not both together.

[Maur1 in reply to DorsetLady]

Thank you very much. I took Paracetamol about an hour ago so will wait and see. If that does not work I’ll try 2.5mg Prednisolone tomorrow morning. I have a small stock left over. It is truly a bu**er.

[PMRpro Ambassador]

I think you could well be right, I say quite often - even 1mg, even 1.2mg can be enough to hold the inflammation from very low level disease activity at bay but over time without any pred the inflammation builds up far enough to cause symptoms. You probably will only need a very low dose so it isn't the end of the world but you might need a bit more to get back to baseline.

I agree with DL - if you have some pred, try it to see if it helps and then face up to the GP so you can enjoy life with that new hip properly.

[Maur1 in reply to PMRpro]

Thank you very much. I will try a low dose Prednisolone tomorrow morning. Luckily, I have an appointment with the rheumatologist in 4 weeks. Last time I saw him I was doing so well that I felt I would not be seeing him again but he asked me to come back in 6 months.

[DevonMichael]

Sorry you are suffering. I too had GCA in June 2016 and this was followed by PMR and consequently I have been on prednisolone more or less ever since. I worked through tapering plans three times and after a short period of zero prednisolone each time I was forced to go back. I am currently on 5mg and lead a great active life free of pain and have reached the conclusion that a good life now is worth the prednisolone trade off. Good luck!

[Maur1 in reply to DevonMichael]

Thank you so much for sharing your experience. I think I would be happy to stay on a low dose Prednisolone if it means a pain-free life although I am really disappointed to think I probably now have PMR.

[Woodly]

I have been taking prednisolone since July 2016 and following the advice of the consultant. The dose has been up and down over that time but recently I had an attack of gout and my GP suggested putting it up to 6mg from 2 and It worked. I have come down since to 3 with no reoccurrence of the problem. At 90 years old one expects aches and pains and am told they may be caused by Claudication, That means that the pains arise when you move around and abate when resting. However, you can't rest all the time so need to keep as active as you can.

[Maur1 in reply to Woodly]

Than you for sharing your experience.s, Glad you got down to 3.

[selkie2019]

Hi there, I have PMR and came off completely in May this year after 3 years of reducing my dose. It does sound like a flare, as per the other replies I would suggest a low dose for a few days, if that helps PMR seems likely. Please seek medical advice and hopefully this is a temporary thing. Wishing you all the best xx

[Maur1 in reply to selkie2019]

Thank you. Good to hear of a successful reduction to zero.

[Woodly]

I was down to zero at one time but the bloodtest before seeing the consultant put it back up.

It has been a six yearroller coaster