Hi Liz,
Julia is on Cellcept aka MMF as a systemic immunosuppressant. Julia was
previously on imuran. I know that other people have also been on cyclosporin.
It is a big step to start immunosuppressants as it puts you at risk for
infections. However, Julia's symptoms were so severe that she was stuck in
hospital dependent on IV calcium because she had malabsorption. Our medical team
agreed to do a 30 day trial of high dose steroids (prednisone) to see if the
steroids would work. High dose steroids suppress the immune system and work much
faster than long term immunosuppressant drugs, but are not as safe in the long
term. The experiment worked. Julia made major improvements within a week and got
off the IV calcium in 10 days. She was discharged from hospital within the
month.
On MMF her oral calcium dose has been halved, she is salivating and tearing
more, her photosensitivity is a bit improved and she is no longer anemic.
She was hospitalized in May for 6 days with the flu, but recovered well after
that.
I personally would talk to a rheumatologist about systemic immunosuppression as
they are the experts in this field. (My sister is a rheumi, so there is my
bias). Julia's meds levels follow those of a child with lupus.
If James' eyes are the problem, have you tried cyclosporin eye drops (Restasis)?
They are a local, non-systemic approach.
Could I ask what meds James has switched to for Addison's?
Also, Julia has candida infections on her nails and vinegar water soaks have not
worked. I spoke to a herbalist last week who said that white vinegar would not
help, but that unpasteurized apple cider vinegar might. She recommended topical
application of neem oil or oil of oregano. Has anyone tried these?
Thanks,
Jennifer
Jennifer Orange
Torys LLP

----- Original Message -----
From: apeced@yahoogroups.com <apeced@yahoogroups.com>
To: apeced@yahoogroups.com <apeced@yahoogroups.com>
Sent: Wed Oct 22 21:01:33 2008
Subject: [apeced] Carers website and question about systemic immunosuppression

Hi everyone,
Just wanted to send an email about a new social network for Carers.
The new site is http://www.carers.ning.com <http://www.carers.ning.com> if
enough people who care
for people with APECED join we can start a group for us all :).
Hope everyone is well. James has started on new Addison's meds and
that has made his diabetes control much better. The question I have
is that the new eye specialist is talking about starting some kind of
systemic immunosupression. He didn't say much more than that as he
wanted to talk to James's Endo first. So I just wanted to know if
other people are on systemic immunosuppession, and what they think
about it. It sounds a bit scarey to me.
Thanks,
Liz





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