Good Morning Everyone
I started off with 60 mgs of Pednisolone for atypical GCA and reducing down over the last few months. Tomorrow I go down to 15mgs. For a few days after adjusting the dose my symptoms appear worse again, then seem to settle down again, do other people experience this?
Hi Maxine, Yes I do. Started at 40mg in August, now at 16mg. Each time I reduce I get mild symptoms after 2 or 3 days. I persevere for a week or two and if they worsen or don't go away I go back up to the previous dose for a while until symptoms disappear and then try to reduce again. Strangely, side effects of the Pred which had also diminished also come back temporarily.
Yes - happens to a lot of people and it is your body adjusting when its usual "fix" isn't available.
Top experts advised some years ago that no reduction in PMR/GCA should be more than 10% of the current dose - although at the high doses some people do manage 5mg or even 10mg reductions without problems. Some of us on the support forums realised a few years ago that spreading a reduction over a period of time helped get below 5mg - even 1/2mg is above 10% there and it often poses a problem. Later we also realised there were a lot of people struggling with the 5mg drops at high doses and 2.5mg at lower doses that their doctors told them to do. We suggested 1mg from the start - and it helped people who had been struggling to get from 15mg. Then a few of us struggled again below 10mg - and worked out reduction plans of this sort:
healthunlocked.com/pmrgcauk...
Many people on the forums have used this or a similar plan and have got lower than they have managed before and with no return of symptoms, whether they were steroid withdrawal or not. This one is being used by a research group in the UK in a study on managing PMR and has been approved by quite a few rheumatologists and GPs who have been shown it by patients.
If you don't use it - we used to say that pain that appears the first reduction day and then improves over the next week or so is steroid withdrawal. Pain that appears after a few days and then increases is almost certainly a flare of the symptoms because the dose isn't enough to control the inflammation - however, when the step down was quite large relatively speaking then the inflammation may not be managed right from the start. They are almost the same sort of pain so there is no way to know which. The slow reduction makes it easier to tell which is which and you can stop a reduction if the inflammation is not being kept under control any more.
Thank you that is really helpful. The GCA affects my axillary and brachial arteries in my arms and when scanned I had a 90% occlusion on the left side. I have yet to be rescanned since starting treatment - it is often difficult to know what is causing the arm pain steroid reduction or just trying to do normal things. My temporal artery so far has responded better .
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