Following the last appointment with the consultant I agreed to attend a 'tapering off' clinic. This was in response to my enquiring why the British protocol was so different to the one used in the USA. There they start Tocilizumab fortnightly and only change to weekly if the response is disappointing. Here, unless there is a reason weekly injections are routine. Aah, he said, I wanted to talk about that, would you like to join this new clinic we are starting? I subsequently had to admit I had already started reducing my dose as experience had showed me (because of my small weight perhaps) I functioned well on half the amount. I was aware that people fought to get this drug and I would have happily let someone else have my not needed share. Subsequently, following a hand scan (this will be repeated every three months at each consultation to check for disease activity) I am now officially on fortnightly injections. There was a hint it may be reduced further if possible. My next bloods will show if this is the correct decision. The clinic leaflet stresses any time I wish to revert to my original dose I can and this is not a money saving venture although any reduction in meds will also reduce the overall meds bill.
On a different note I have cut back severely on gluten as I wondered if it would mop up a problem which arrived with this treatment. As well as helping with the problem it appears it is helping elsewhere as well. Having struggled sometimes to keep up the neutrophil levels; they have risen sharply with the last two bloods and the June results are awaited with interest. I know that sometimes patients are taken off this type of medication because of neutrophil problems and I mention it in case it is of interest to anyone, bearing in mind I have limited info at the moment and we all respond differently. If the June result is all I hope for I will report back as it would be such a simple solution, if solution it is, for some.