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Carers website and question about systemic immunosuppression   Message List  
Reply | Forward Message #409 of 593 |
Hi everyone,
Just wanted to send an email about a new social network for Carers.
The new site is 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




Thu Oct 23, 2008 1:01 am

hypodogs
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Message #409 of 593 |
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Hi everyone, Just wanted to send an email about a new social network for Carers. The new site is http://www.carers.ning.com if enough people who care for...
hypodogs
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Oct 23, 2008
1:01 am

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....
Orange, Jennifer
bandorangej
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Oct 28, 2008
4:10 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...
Liz and James Yarker
hypodogs
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Oct 29, 2008
4:28 am

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...
Vicki Robson
vrobson1
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Oct 30, 2008
7:39 pm

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...
Liz and James Yarker
hypodogs
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Oct 31, 2008
12:24 pm

Thanks Liz for the info. We will discuss  this with Ryan's doctor. How long has James used the drops? Can the Dr. Males tell if the drops are indeed reversing...
Vicki Robson
vrobson1
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Oct 31, 2008
4:11 pm

Hi Vicki, James has only been using the drops for a month - we have a review with the specialist on Monday - I'll let you know what they say J Liz From:...
Liz and James Yarker
hypodogs
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Oct 31, 2008
8:01 pm

Hi Liz,   I hope it is good news!  Looking forward to hearing from you.    Thanks, Vicki ... From: Liz and James Yarker <theyarkers@...> Subject: RE:...
Vicki Robson
vrobson1
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Nov 1, 2008
2:57 pm

Hi all, James had his appointment at the eye hospital - but it was a different specialist! Apparently his normal specialist wanted another opinion. So I ...
Liz and James Yarker
hypodogs
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Nov 3, 2008
7:46 am

HI Liz,   Thanks for the update on James's appointment with his specialist. Using the Retinoic Acid drops sound hopeful.  It is nice that he is able to...
Vicki Robson
vrobson1
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Nov 3, 2008
9:09 pm
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