From: Liz and James Yarker <theyarkers@...>
Subject: RE: [apeced] Carers website and question about systemic immunosuppression
To: apeced@yahoogroups.com
Date: Friday, October 31, 2008, 7:23 AM

Hi Vicki,

We live in Australia and so I’m names of drugs are different which is really annoying!  The retinoic acid was prescribed by James’s cornea specialist – Dr Males (pronounced Ma-less) at the Sydney Eye Hospital – I’m sure he’d be happy to talk to other specialists if your specialist wants to (just google Sydney Eye Hospital for the number J).  The drops are 0.01% Retinoic Acid – and as you can imagine from reading their name they hurt big!  James has them every second night just before bed because he can’t see for a while after they are put in.

Hope this helps,

Liz

 

From: apeced@yahoogroups. com [mailto:apeced@ yahoogroups. com] On Behalf Of Vicki Robson
Sent: Friday, 31 October 2008 6:39 AM
To: apeced@yahoogroups. com
Subject: RE: [apeced] Carers website and question about systemic immunosuppression

 

HI Liz,   My son also has the eye condition associated with APS. He uses a steriod drop along with  cyclosporin( Restasis) . I have never heard of Retinoic Acid. Is this something new? I would love to find out more about it so we can share it with his cornea specialist.   Thanks very much, Vicki --- On Tue, 10/28/08, Liz and James Yarker <theyarkers@gmail. com> wrote: From: Liz and James Yarker <theyarkers@gmail. com> 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 This email and any attachments are for the sole use of the intended recipients and may be privileged or confidential. Any distribution, printing or other use by anyone else is prohibited. If you are not an intended recipient, please contact the sender immediately, and permanently delete this email and attachments.