19 April 2011

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!!


  1. I hope that super cute Miss Petal is keeping you smiling. I'm sending lots of loving, healing thoughts your way.

  2. Can you get accepted into any "studies" since you are such a special subject? Have you got a pro-active specialist who can lobby the drug company directly? I know it can be done in the field I work in, perhaps in his field also. Drug companies have a never advertised policy of compassion for some things .....
    Best thoughts for you all, and hugs as always.

  3. goodness me you are having a rough time. Hang in there.

  4. You are having a rought time - at least you can cross another medication off the list. Hope the next one does the trick, and you can get off that Pred sooner rather than later.

  5. Get a liver transplant. And use stevia or something.

    Or just drink yourself to death!!!

  6. Does the drug company have a Patient Assistance plan? Some of our drug companies here provide medications for people free of charge if there is economic need. (although I would imagine your doctor would know about this and have told you).

  7. Hugs. Glad to hear that the numbers are getting better. Good news. Hope that you find the right balance of meds soon.

  8. So sorry to read you are still battling along Jejune. xx

  9. A functioning liver is something that no one should take for granted! So glad that yours is coming back on line. What can we do for you?

  10. Ugh - I'm glad the issue isn't in your liver but I wish there was some way I could help.

    Have you thought of adding green smoothies to your diet?

    I've recently added them to my diet and intend to increase the amount I drink once my new blender gets here (I broke the old one...) - some of the claims the proponents make are quite far fetched - but if even some of the things they claim are true/valid/replicable then it might be worth a shot. At the very least it should increase your nutrient levels. If you are interested, try looking up Victoria Boutenko - or email me.

  11. Well, looking at those lovely cupcakes is almost as nice as eating them ... that photo belongs in a magazine, then clipped, then framed! LOL!

    I agree with BeatrixB ...


    Lots of hugs your way.


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