From: Liz and James Yarker <theyarkers@...>
Subject: RE: [apeced] Carers website and question about systemic immunosuppression
To: apeced@yahoogroups.com
Date: Tuesday, October 28, 2008, 11:28 PM

Hi Jennifer,

James has changed from hydrocortisone to prednisone – much better on the prednisone as he isn’t going low all the time.  Thanks for the advice of seeing a rheumatologist – will ask to do that before doing anything else.  I’m in Australia so eye drops are probably called different things – but James is on the following eye drops: Predsol (0.5% prednisolone) , Cellufresh (artificial tears), Lacrilube (a thicker version of the artificial tears) and Retinoic Acid which apparently helps reverse the limbal stem cell failure.  The photosensitivity is defiantly better than it was in February, but his vision fluctuates wildly – 20/200 one week and then 20/16 the next.

 

James has a candida infection on one nail but he hasn’t tried the solutions you mentioned – although he might now J.

Liz

 

From: apeced@yahoogroups. com [mailto:apeced@ yahoogroups. com] On Behalf Of Orange, Jennifer
Sent: Wednesday, 29 October 2008 3:10 AM
To: apeced@yahoogroups. com
Subject: Re: [apeced] Carers website and question about systemic immunosuppression

 

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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