Posted a couple of weeks ago while I waited for return call from Rheumy about ESR rising to 16/17 in February blood test from only 2 in December. Wasn't feeling much pain then, just really not myself and no energy. Next day after posting the back pains kicked in followed by pelvic & leg pain - exact same pattern as previous flare. So I'd been on 7mgs for 2 weeks when this happened and decided to increase to 13mgs for 10 days. Meanwhile got message from Rheumy through nurse to say get a blood test for arthritis and fibromyalgia as this could be causing tiredness and stay on the taper as inflammation can't be from GCA/PMR because I'm on Actemra (4.5 months). I told the nurse about how pains had got worse in the 3 days waiting for a response. She just repeated the answer she'd been told to give, so I decided, rightly or wrongly to stick with the 13 mgs for 10 days. Now I'm on my 10th day and planning to reduce to 10mgs tomorrow, but although feeling better than I was 10 days ago, pains have not gone completely. Am I ok to reduce to 10mgs tomorrow do you think? if I stay at 13 mgs for longer it will be another slow crawl back down again. May be worth mentioning that last time I flared it took a couple of months on 20 mgs for pain to subside. Thanks for any advice.
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strawclutching
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Since you are on Actemra, a rise in CRP needs to be investigated - and you can tell the nurse that from me!!!! I asked my rheumy last week why he still did it and he said they have found that if the patient develops antibodies to Actemra (which can happen), the CRP goes up. It is rare but it happens.
But anyway, only half of patients in the clinical trials got off pred altogether. There are 3 different mechanisms that cause the inflammation in GCA and Actemra only works against one of them. If your GCA involves either or both of the other two you are likely to need some pred to manage them and you will need ENOUGH to manage them or you will flare. It is quite clear in the documentation from the trials.
which has a couple of very interesting statements!
"... it remains important however to highlight that glucocorticoids are and do remain the mainstay of acute management of GCA, as outlined in the introduction. Qualitative work has demonstrated that rheumatology clinicians are “often under pressure from patients and their primary care physicians to taper corticosteroids” and that this may not always be what is appropriate "
I beg your pardon - who pressures who? Not our experience!
And even more relevant to you maybe:
"Furthermore for patients who are on tocilizumab and concurrent steroids, steroid dosing should be increased to the previous higher dose if the patient is experiencing a relapse—as per EULAR guidelines [18]. This was commonplace in the series, with 13 of the 16 cases experiencing a relapse. However, this is not to say that a relapse precludes an eventual steroid wean whilst on tocilizumab—and case D demonstrates a scenario where a case who had two relapses was able to wean off steroids completely."
Thanks for that PMRpro, and for your quick response. Still in a quandary whether to drop to 10 mgs in the morning. Maybe most of the accumulated inflammation has cleared by now even though some pain is still there & not feeling up to doing much. May have to stop the Actemra anyway because of the haywire blood sugars stopping me getting a decent night's sleep. Doing around 12-15 BM's (finger pricks) a day/night to keep in control.
You gave me this link last time about Actemra affecting HBA1c's in diabetics. onlinelibrary.wiley.com/doi... To report, would that be the yellow card thingy?
I would, but it may mean adopting the DSNS method again to get back down to just above the dose where I was well. Protocol for dealing with a flare is 10 days at the 'well' dose plus 5 mgs, then down in no more than 2 steps over a couple of weeks, as I understand. I've already had an 18 month setback with the first flare after following my GP's advice. Just hoped I could get back down quicker this time before my life ends. 😂
Not yet I hope. Will be 70 in December, and can't imagine still having all this to deal with by then. Things have surely got to be easier if I get on the right drugs, even if it's only Prednisolone and nothing else.
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