I was diagnosed with GCA in Dec 2022, put on 30mg prednisolone, ultra sound delayed by 10 days and had negative result, within a few days of the prednisolone the headaches neck pain and scalp pain all gone, I gradually tapered to 12 and half mg last September, have had many side effects, weight gain, moon gave, 2 cataract ops, hair loss etc etc, I was on holiday trying on a dress when I felt my neck crack, early hours woke with neck pain, back of scull pain over my eye, left if for the days then panicked and upped my dose, ending up at 20mg over the next few days, saw RodHughes in Sept he said could all be due to my neck, even right from the start when I had had an episode with my neck prior to the original diagnosis, Rod Hughes adviced to taper at my own pace until I get to 10 then to contact him again and he will advise from there.
Last Wednesday I cut down from 12 and a half to 11mg after being on the higher dose for 7 weeks and feeling ok, by the next day didn’t feel great, thought probably withdrawal, on the Thursday I had a back massage which at the time was amazing, she worked quite hard on my back and neck as quite knotted, as the days have gone on my neck, back and headaches have got worse, I saw orthopaedic consultant on Monday and I am going to have steroid injections into my neck, so there is a definite problem there. I am feeling pretty rubbish at the moment and mood has dropped as symptoms have appeared, just frustrated and not sure, if withdrawal, my neck or a flare, I go on a river cruise on Monday for a week and so want to feel good and enjoy it, it’s been a tough 16months, so my question to you all as I look at this site every morning and have learnt so much from you all, is, do I increase steroids and if so by how much and for how long or do I sit it out for a bit longer, I have the osteopath tomorrow who is very gentle and just stretches me out, sometimes my neck problems start lower in my back and then everything locks(I did some gardening in Sunday) so probably didn’t help, also I’m taking 2x5mg coated and 1mg uncoated together, I am also on lanzoporazole, so is mixing coated and uncoated together ok,
Thank you in advance for your help
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Mumdadlove
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This contain usual advice for dealing with a flare - but have to say there has been a lot going on since your reduction last week - so could be a mixture of a flare and reaction from massage - and gardening.
Hopefully an increase will sort things out, but would just say
a. Don’t decrease just before a holiday, nor just before therapies unless you have had them before and know they don’t t upset your PMR, and
b. Don’t try and cram too much in just before you are going away, I know it’s natural to, and although it might be okay before PMR… it most certainly isn’t with it.
Thank you, I actually feel a bit better today, so will see how the day goes, I have given myself 3 days to pack slowly, I realised afterwards that I had probably cut down at the wrong time with to many other things going on, is 12 and a half to 11mg to big a jump, Rod Gughes said I could go to 10 but I thought I was being cautious by going to 11mg, it’s crazy how such a small amount can make such a big difference. Thank you so much for your advice
The changes in the upper back and shoulder muscles after the massage could well be causing the neck and skull pain - it is all in a balanced relationship when you have no problems, even the slightest change can mess that up and you do obviously have some issues there. The combo of the change in dose and the massage changing the balance was probably too much - and that was quite a sizeable change in dose. As DL says, never change 2 things at the same time because then you can't tell which did what. Nor add another ingredient like gardening!
Me, I'd treat it as a flare to see if that helps, if it doesn't that also tells you something. If it does, you should stay at the 12,5mg until after the holiday and then try smaller steps down. If it doesn't - hope the osteopath achieves some relief.
PMR I have replied to Dorset lady as I wasn’t sure how to do to both of you, so thank you for your help and advice, I’ve been told by my doctors that I’ve now become complicated lol, also had heart scan, dexa scan yesterday and neurologist as MRI showed pressure in the brain which they now think steroid induced, thank you again
As DL said, we both see everything!!! I wonder if Rod meant to go to 10mg in a single step - or just when you have got there in your own time (slowly) ask me how to go forward.
At our age I suspect most of us are complicated! So more than one thing may change when you don't expect.
I will go back to 12 and a half mg and stay there until after my holiday, last year I was doing ok on 12 and a half mg and tapered to 10mg(advised by different Rheumy) I couldnt do it and then started yo yoing, Rod has been great and has said do what you are comfortable with, when you get to 10 contact me and will guide you from there, what would you advise from 12 and a half mg, 0.5? ive looked at the link from Dorset lady and the page is down, many thanks again to you both
The entire site was supposedly down a few minutes ago so try it again as it worked for me just now.
It sounds as if a lot hasn't changed from last year - you couldn;t manage a big step then. At this stage most people would manage 1mg, but as I said to someone yesterday - 12,5mg is OK, 10mg is not enough, but is it 12 or 10.5 they needed. Is it the dose or the change in dose that is the problem? I would stick to the 0.5mg - slow isn't slow if it works!
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