What shall I do - pred reduction

[babssara]

Hi, Dr receptionist just phoned. ESR down to 44 from 69 last week. Told to reduce pred from 40mg to 35mg for one week then down to 30mg - repeat bloods. I am just coming out of the most horrendously painful flare up of Palindromic Rhematism. Also the left sided head pain still bad (GCA). I've tried to speak to GP but no telephone or appointments available. From the posts I've read here this seems such a drastic reduction (still waiting for tests and treatment from Rhuemy), I'm a bot loathe to reduce this much as I really could not stand another flare as bad as the last one. Any help would be appreciated. Thanks Babs

[PMRpro Ambassador]

If you still have GCA pain then you shouldn't be reducing. Although the ESR is lower it is still way above normal levels (1-20 is felt to be acceptable these days) which indicates there is still something going on. Really there shouldn't be any reduction at all until the symptoms have resolved as far as they are going to (ie are stable) and the blood levels are pretty much normal (again, when stable and at least under 30) - only then can you really say that the inflammation is under control. What they SHOULD be doing is say carry on as you are, repeat bloods next week or the week after. Most patients would be on the starting dose for at least 4 weeks - and many doctors use 60mg to start for 1 month, then 50mg for a month and 40mg for a month.

Just to show this isn't a non-medically qualified internet wierdo saying this is normal practice in GCA, here is the link to a paper written by a UK group of rheumatologists to assist GPs with diagnosis and management of PMR and GCA. Their GCA treatment scheme is on page 346 (don't worry, it's only about 6 pages long!)

rcpe.ac.uk/sites/default/fi...

GCA belongs in the hands of experts and your GP is as capable of dealing with that aspect as anyone else - but you don't do it by putting the patient into the run-of-the-mill appointment process. You don't do that for a stroke or a heart attack and this is the same level of need. You send the patient to hospital with a referral letter and beforehand you phone the hospital to speak to the appropriate consultant or his secretary. It isn't rocket science - but it might as well be sometimes!

While I appreciate you don't feel particularly well I would take a partner or friend with me to the practice and inform them this is an emergency and you wish to be seen. If not now, then before end of play for the week whatever time that is on Friday. And if they say no I would ask - nicely - to see the practice manager and tell them that if you aren't seen or at least it be acknowledged you need to stay at 40mg for at least another week (together with the appropriate prescription for the tablets if you need them) you will feel a need to go to A&E.

[babssara in reply to PMRpro]

Thanks PMRpro. I knew you would give me the right kick up the backside I need to take control of this dammed condition. I will take my forceful daughter with me to the docs. I will keep you posted. Also thanks for the link. That's my afternoon reading sorted. Babs