GCA/ Prednisolone reduction

[Clementine15]

Hi, Haven't posted before but have read regular posts and found the info very useful. I was diagnosed with GCA in February 2015. Immediately went on to 60mg of Prednisolone and have been reducing ever since, quite slowly. Had one or two flares but getting there. In August last year I had a fall damaging my knee and need a partial knee replacement. Orthopaedic surgeon said he can't do that until I'm below 5mg Pred which I now am? However I'm having real trouble with frequent flares of the GCA, trying to get to 3mg and have to keep increased get the meds sometimes by 10mg. I see the Rhuematologist in two weeks but the appointment is in the middle of the junior doctors strike so I'm not sure I will see him to ask if I'm right to keep increasing the Pred dosage. Anybody have any ideas for me?

[Celtic PMRGCAuk volunteer]

Hello Clementine, it does sound as though you are reducing the steroids far too quickly and putting yourself at risk of continuing flares, not to mention risk to your eyesight. If you were only diagnosed in February 2015 and have reduced from 60mg to just 3mg, that is a very fast reduction. You need to find the dose that contains the inflammation and keeps it there, and remain on that dose for a good month or more before trying a SMALL reduction, thereby reducing the possibility of flares and the need for continuous increases in dose which just means that you will end up even taking more steroids in total. I believe your surgeon should be able to carry out the operation even if you are on a higher steroid dose than he stipulates. I appreciate that it must be difficult if you are in constant pain with your knee, but GCA must be the number one priority here. Is it possible for you to bring your next appointment with the rheumatologist forward before the impending strike in order to get his advice?

[PMRpro Ambassador]

I would search round other knee surgeons to find someone who is a bit more realistic. There is a lot of variation between them - some will operate while patients are still on pred and, as Celtic says, if you've only had GCA for 18 months it is pushing it to expect to be down to 3mg soon.

However - if you are on 5 and aiming for 3, how are you doing it? You won't manage that in one go.

[polkadotcom]

Hi, Clementine, I had a hip replacement op last year while on 10mg Pred and a knee replacement this year while on 7.5mg. I think it is down to the individual surgeons and their ideas - I don't think there are many surgeons who have much knowledge of either steroid treatment for PMR and even less for GCA!

By 'managing' on a steroid dose which is too low you are putting yourself at risk of losing your sight, and once it's gone, it's gone. The untreated inflammation in your body is also a risk, it can do damage.

The surgeon might want you to be on a low dose, but it isn't his eyesight or his health he's playing with. I would suggest that you ask your Rheumy to intercede by sending him a letter asking him to reconsider the steroid dose and the reason for the request.

This will, of course, take time, but that could be well used by you to stabilise your Pred dose to where you feel most comfortable. If it were me, I'd be going to at least 10mg.

If your Rheumatology clinic has a nurse-led contact line, you could ring them and tell them the problem and follow it up with a letter from you to your Rheumy. I find problems like this do better put in writing.

I know the misery of a rickety joint only too well, but it might be worth enquiring at your GP's surgery if they have a pain management clinic, or if they are able to tide you over with stronger painkillers. You could also look on the net (reputable sites only, of course) and discover distraction and relaxation techniques - I found them very helpful.

[Clementine15]

Thank you all for much needed support. I don't feel quite so at sea with it all now. Even though I want the knee op I think I'll do 10mg for the time being, which is where I was last comfortable and I will be in touch with the Rhuemy. Again thank you.

[raymck in reply to Clementine15]

Hi C, Not sure I agree with the extra slow reduction regime, as I made Club Zero in a year! Sure I have aches and pains but as I'm nearly 80 that's only to be expected I guess! We are all different in the way we are affected, so don't worry too much as long as your sight is being protected. Best of luck with the op.

[PMRpro Ambassador in reply to raymck]

Do I also take it you are male? Men have a very different experience of PMR. GCA and pred from women. No idea why, it is just so.

You may not agree with it - but there are a lot of people on the forums (all 3 of them) who have got to a lower dose than ever before using it or something like it.

[raymck in reply to PMRpro]

Yes PMRpro, You guessed correctly! Crusty old gent for want of a better description, but have been on the forum since 2014 when i lost vision in one eye, before being admitted/diagnosed. Better late than never, but I am glad there will be more awareness in future as our plight becomes more widely advertised. We all appreciate your comments!

raymck

[piglette]

I think most surgeons will consider operating at 7.5mg of steroids or below, although some refuse to operate at all. They mainly seem to be worried about healing times because of the steroids and also an increased risk of infection. I was talking to an orthopaedic surgeon friend about PMR and hip replacement and he said the chances of a flare are quite high. I am not sure if this is true of knees or not. I think this may be due to the fact that people have been forced down to a lower level than is sensible, so they can have the operation.