Hi folks. I'd got down to 7mgs of Pred with the aid of Actemra (started 5 months ago). After 2 weeks on 7mgs, pains returned - same pattern & symptoms as first flare. ESR had jumped from 2 to 17 between December and February. Rheumy said to stick with the taper, pains could be something else. Three days later pains got worse, couldn't do much but sit in the chair so upped the Pred from 7mgs to 13mgs for 10 days then dropped to 11mgs. Pain hadn't entirely gone by the time I dropped but then it got worse at 11mgs. After a week on 11mgs went up to 15mgs where I've been for the last 10 days. Spoke to the rheumy 2 days ago and confessed. She wasn't happy, told me to reduce by 2 mgs fortnightly starting end of next week. Insisted I must get down to 3 mgs by the time my year is up with Actemra which will be October again.
I have monthly blood tests organised by the GP surgery, but lately they have been omitting items from the test list. This month, they refused a blood test saying I wasn't due until end of May. A few econsults later and still they weren't checking my notes or clinical letters so I complained to the Practice Manager. She said she wasn't happy about my tone. Eventually got a blood test scheduled next week. No apology however, and I get the impression I'm known as the pain in the neck.
I know it's almost impossible to tell, but does anyone think the 2 mgs fortnightly reduction will be manageable from 15 mgs down?
No, and your rheumy obviously doesn't understand the use of Actemra: in the clinical trials only about half of patients were able to get off pred entirely in a year, It says that quite clearly in the documentation.
GCA has at least 3 known mechanisms that create the inflammation and Actemra only works for one, the IL-6 mediated one. If your GCA involves the other two, you need pred to manage them as long as they are active. Actemra does NOT have any influence on the underlying disease, it stops the IL-6 being able to work by occupying the receptors that it needs to attach to to have its effect. The hope is that the mechanism that produces the IL-6 will fade away and it does seem to so for the half of patients where IL-6 is the only mechanism they are able to get off pred. That doesn't mean it is permanent though and quite a few relapse when Actemra is removed. And the others still need pred.
A follow-up study found patients really need Actemra for up to 3 years - a more normal expected duration of GCA management.
"She said she wasn't happy about my tone" - and I wouldn't be happy about hers either. The patient is left high and dry. I'm staying here.
Thanks PMRpro. I was thinking along the same lines but just wanted to hear from your expert knowledge. I'm going to take it as slowly as it needs to go by using blood work & pain levels to guide. The GP practice & their attitude is another matter I'll deal with when I'm feeling better.
I was once asked to leave a practice - not in quite so many words it was "Why do you stay here?", The answer was "Because my husband, god help him, thinks you are ok." The doctor in question had given 3 lots of antibiotics for a persistent cough and then assumed it must be asthma as the peak flow was reduced. Luckily 3 days later he coughed up blood, luckier still he went to work and mentioned it to a colleague - who did what the GP should have done, sent him for an x-ray. That showed the tumour that was causing the cough and reducing the peak flow and the colleagues sprang into action. This doctor thought this process was my "fault" and took it out on me. He also informed me HE saw no signs my daughter was depressed at the same time as inferring I should leave. I did, went to the local paed psych unit she had been under recently and saw her doctor there. Who agreed with me and told me where to go - the practice in the other village! Best move I ever made, And OH followed us a few months later when MY doctor visited the house to check on him more than his own did.
So glad it worked out for you in the end. Why they think it's ok to keep failing with patients like us is beyond me. I'll try moving practices, but with so many co-morbidities and my age, etc I doubt anyone will be willing to take me on.
My family was told to find alternative surgery after a solicitor asked for my daughters records and they were told her primary care was at fault.