So I started a methotrexate prescription, normally shortened by the more mature of us to MTX – a.k.a. meth! on 5th July. Thats… nearly three months ago now. Three months being about the longest rheumy Dr said it might take to start reducing immune response and the rate at which my body is attacking itself.
Now that makes me wonder how we know if it is working. Current Death Toe has been being a little shit since about March, but in terms of zombie level has advanced rapidly in the past three months. Which rheumy doc knows. So clearly we aren’t judging its effectiveness by the already dying digits.
If we are judging it by blood tests – inflammation markers maybe? Then surely the steroid dose I’ve been on for at least three months will be misleading? Cryo levels alone maybe? We only have one previous test result to compare to I thought, so surely that isn’t very conclusive?
If we are judging on pain and cryo symptoms other than mottling and dying toes, then again steroids will be giving a misleading picture. When you combine the steroids and the absolute boatload of painkillers I am taking for Death Toe, my joints are the best they’ve been in over a year!
[…not counting shooting pain up Death Toe leg 😠]
So I think the plan is to make up some abstract criteria between us when next I see rheumy doc (hopefully sooner than the four weeks away currently scheduled), and decide if I remain on the meth or go onto rituximab 😕
Henceforth rituximab will be known as weetabix as it is quite impossible to spell or pronounce. I want to move onto weetabix to be honest, as it seems to be the go-to hot fave vasculitis treatment at the moment. I am a rare egg… I would quite like the current best drug and not be suspecting I am on meth as it is cheaper/easier to administer!!
In the meantime, mainly because it needs eight extra pills which makes the midday pill pile look amazing, I started doing a Tuesday = Methday pic on facebook a few weeks ago. As well as having a laugh with it whilst reminding friends I have a chronic illness, this also has the (probably way too subtle) purpose of reminding people that autoimmune diseases are bloody serious and require a lot of medication – and anyone googling meth will see straight away that it is indeed a form of chemo.
Nothing says ‘Chemo Day’ quite like a Meth Unicorn 😉
Chemo without failure makes people think cancer. I have become aware that some people find even bringing up the fact that MTX – the drug you are taking every week – is a chemo drug offensive and think you are trying to make comparisons 😕 No one suffering a chronic illness is that bloody insensitive, self-important or lacking in empathy!! Worth remembering also that whereas cancer treatment needs a bloody huge dose and makes patients horribly ill, the treatment is over a comparably short period.
As an autoimmune treatment MTX is taken once a week, every week, ’til the end of days… Or until the side effects become intolerable, you change treatment or you go into remission. I could theoretically be on meth now for the rest of my life!! Now theres a thought 😄
Speaking of, need to order more meth…