what flows through my veins…

What flows through my veins on hospital day!

Thank you to all the beautiful followers that asked what my magic treatment is and what it will help with.     It was good to reflect and remember what I actually get up too!

arthritisToday I completed my sixth treatment of what I call my wall building treatment.  I  get 1000mg IV of Rituximab via Intravenous (IV)  – IV that’s a needle in a vein in my arm for fluid to run through a line for the day,

Rituximab is a DMARD or a Disease-modifying antirheumatic drugs (DMARDs) I am very blessed to have access to the treatment as it is only prescribed for those who can tolerate it and use it in combination with weekly methotrexate – which I take with each weekend and why I work four days a week.  The day after methotrexate I feel like I have a big hangover!  Both are are funded for for the treatment of patients with severe active rheumatoid arthritis who have had an inadequate response or intolerance to other disease modifying agents, they are also cancer treatments as they work on the cells in a similar way by building a protective wall around cells we need.

I have a treatment and then two weeks later another treatment.   I spend the day at the Medical Day Unit of Christchurch Hospital both visits while it drips into my veins over a 8-9 hour period.  After these two months it hopefully will last for up to 6months.

flareBoth my treatments are designed to slow down disease progression of rheumatoid arthritis.   Phew and high five to that!  Means I have a longer game before I end up crippled and/or in severe pain.

I also receive 100mg IV of methylprednisolone, a corticosteroid, to relieve inflammation (swelling, heat, redness, and pain). It is added to an intravenous fluid that drips through my needle placed in my vein for at least 1 hour per day before the Ritux.   It’s function is to act as a cover story by masking all my symptoms until the Ritux kicks in and my flare is under control.

I also get an antihistamine, pain relief and anti nausea to balance out the side effects.   Luckily Riwai and I have the routine down pact so it takes the pressure off both of us and we are able to cope much better.   First day Post hospital I am very creative, chatty and feel amazing – we know this is the methylprednisolone and adrenaline high (and relief) from the day.   The second day I get an over whelming sense of exhaustion and crash out!  I wake up so hungry – like a bear who has gone into hibernation, the only bummer is I have no taste and often a dull sense of smell… so we eat by texture and memories for about 4-6 weeks. Riwai is amazing and hopefully this round as we are using myfoodbag.co.nz that life will be far easier until I get my taste and satiety and sanity back.

Then day to day I take a top up regime and have regular blood tests and follow ups with my also specialist team and GP.    Riwai becomes my carer for mornings and is my driver, supporter and all round AMAZING SOULMATE and husband!  Go the carers of the world.. You are our ROCKS!

I use my crutches and mornings take up to around two hours for it all to kick in!  The greatest part of all this treatment is that we have very minimal treatment at home!  YAY for that and big thanks to the hospital!

This all happens behind the scenes and lasts for a while as my body gets used to all the hospital treatment.

And this is why we have been working hard to get be to be able to work from our own studio – LeapHQ which hopefully will minimise the stress on us as a couple and keep me available for all my amazing LeapStars for many years to come – because it is my work and my friends and family that give me hope and keep me going in the dark days


ps any questions please feel free to ask me!
tomorrow is a new day and a new start of this round of ground breaking treatment!