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Tapering off clinic

PheenyPheeny Posts: 12
edited 1. May 2019, 08:45 in Living with arthritis
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.


  • barbara12barbara12 Posts: 20,908 ✭✭
    edited 30. Nov -1, 00:00
    Hi Pheeny
    I think the feeling of being in charge really helps, good for you and I do wish you well in the future..please keep us updated..x
  • stickywicketstickywicket Posts: 25,994 ✭✭✭
    edited 30. Nov -1, 00:00
    An interesting thread. I've never done tocilimumab and I've no idea why the UK and USA differ in how they prescribe it but they differ on so many things, medical and non-medical, it doesn't surprise me.

    I've reduced meds before but always with the go ahead from the docs as they can interpret my blood results better than I. I've had times when I felt fine but my bloods said otherwise and vice versa.

    As for gluten - there are those for whom it causes serious problems but many others can have a less serious intolerance. I think it's to do with how they mill and refine stuff now.

    I don't quite understand the neutrophils thing. I always thought they rose in response to infection and we should aim for a low count but maybe I got that wrong.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • PheenyPheeny Posts: 12
    edited 30. Nov -1, 00:00
    Thank you for replying to my post. I do agree Sticky that doctors are best to interpret bloods and I wouldn't encourage anyone to think otherwise. But my bloods didn't alter, I felt well and the side effects decreased. I had queried the dosage over the years but didn't pursue it. A few years was spent in clinical trial with this drug where there is close monitoring so I knew some of the effects of having to vary the dose. The department was amazingly open about all aspects and very generous with any questions so you never felt a good support system wasn't in place.

    I think you are right about high levels of neutrophils being serious, but when this drug lowered them too much a dose had to be missed until they returned to normality. There is always the regrettable threat of having to stop the treatment if levels can't be maintained. This is why I am hoping the gluten restriction in my case removes this problem altogether and I can keep on injecting. Fingers crossed for the June bloods.

    Further to the USA/UK their protocol is to do fortnightly injections is the patient is under 100kg. (Infusions of this drug is weight ratio but the syringes come only in one size) I barely make 50 and this could be why a reduced dose has not been detrimental. This is a wonderful treatment for those who can tolerate it. I have been on it since 2011. I wonder also if any other UK hospital rheumatology department is running a tapering off clinic.
  • stickywicketstickywicket Posts: 25,994 ✭✭✭
    edited 30. Nov -1, 00:00
    I really hope it helps.

    I Googled gluten and neutrophils and this came up. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4188954/
    The site is very reliable but my brain isn't up to it. Maybe you'll fare better.

    As for the trial, it sounds a very good thing. I'd guess that you attend a teaching hospital and someone has got a grant to investigate this. So, maybe, not many other clinics of the kind.

    Please keep in touch and let us know how you get on. It could be really useful for others as, even if they have no such clinic, they could always ask their rheumatologist to reduce their dose. In my book the best dosage of any med is the lowest one at which it's effective and we don't always know until we try.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • PheenyPheeny Posts: 12
    edited 30. Nov -1, 00:00
    Thank you for the link Sticky. It is mind boggling stuff. A research by Harvard was much easier reading and did show a link between gluten and neutrophils, though they thought most people would never find it a problem. Checking my blood results book I see they took a nosedive with the Biologics so i am even more curious to see if gluten restrictions keep them reasonable and stable.

    The clinical trial was drug funded. The drug itself wasn't on trial but the viability of home treatment via syringe versus infusion. I found that NHS Scotland had commissioned a financial report about tapering off Tocilizumab in 2014, when, I think, self injections were passed by NICE. The emphasis was absolutely on financial savings although they did say that no patients should be denied reverting to original doses if requested and needed. I am surprised if this was in the pipeline in the NHS in 2014, it has taken until 2019 to put it into practice. With the need to manage NHS finances for the welfare of us all it could be well overdue, if it lives up to its promise not to coerce patients in any way. As you say, at the least it might make a 'reduction in medicine' an easier conversation to have with a consultant.

    I am immensely grateful to this forum. It is a lifeline, especially in the early days when you are reeling and have more questions than you can find answers.
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