Loverly livery

A quick update:

My liver function is slowly improving (only 5 times higher than normal now, instead of 10), which means that (very unusually) the Imuran was the cause of the problems. This is good, as it means the sarcoid isn't in my liver, and my liver symptoms are slowly getting better.

But it also has some rather alarming consequences, the main one being that we're about to go bankrupt ... the next immune suppressant med I can try (and we're starting to run out of options) is CellCept (Mycophenolate) which isn't on the PBS for non-organ transplant patients, and costs around $660-$1,100 per box (of 300 tablets). Typical doses are 4-8 tablets a day. It's likely to cost around $20/day ... my immunologist needs to get hospital approval to even write the script, so I don't know my starting dose or exact cost yet.

This tendency for my neuro-sarcoidosis to be hard to treat is not a good one :( It's also not good when your immunologist says you're "special" (as in very unusual).

My vision has deteriorated again rather rapidly over the past week off Imuran ... so I'm back up to 50 mg of Prednisolone, crap crap crap (I had got down to 6 mg). Luckily I have Eye Clinic this week, so we can assess how it's going objectively. Hopefully I won't be on this high a dose for long (a few weeks?), but the tapering down process takes months and months. Back to steroid-induced diabetes, insomnia, and the rest.

I can't bear the thought of even more weight gain (almost suicidally depressed about the extra 15 kg since starting on Pred in October last year), so am just going off sugar as much as possible, for good. It won't be easy, but I've got to do something.

Bye bye cakes :(

(Chocolate cupcakes with vanilla icing I made a while ago, using the super cute Fred & Friends silicone tea cup cake pans, from my good pal Cindy).

And thank you everyone for your lovely comments, I really appreciate hearing from each and every one of you!!