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Recently diagnosed from Canada

L Message
12 Jan 2018, 10:49 PM

Hello,

‘I am a 48yr old female from Canada. I was diagnosed in November with Caplillary Leak Syndrome. I have already received one dose of IVIG and will continue the treatment on a monthly basis. I was wondering if anyone had any experience with also taking Enbrel or Remicade with IVIG.

aporzeca Message
13 Jan 2018, 05:03 AM

Welcome to our community!  Please fill out your profile page by adding your birthdate and the story of how you came to be diagnosed with SCLS.  We are still looking for as much information as possible.

claude53 Message
13 Jan 2018, 09:28 AM

Hello,
I am very interested in learning why you have a treatment of Enbrel or Remicade (possibly rheumatism?).
SCLS is a disease under the influence of immunology, as is rheumatism. There could be a relationship between both ??? Cordial greetings
Claude Pfefferlé, cn.pfefferle@bluewin.ch
L Message
13 Jan 2018, 02:34 PM

Hello,

I have had a full genome profiling done and they are looking at specific cytokine responsible for the inflammatory process and hoping to target it specifically with a treatment. TNF has come up in profiling as high and that is what they are looking at for biologic therapies. I am not ready yet for these therapies as I am recovering from fasciotomies due to a blood clot caused by removal of femoral line. 

I have a number of physicians following my case. Rheumatologist , nephrologist, hematologist, immunologist. They are all working together to give me the best possible care and treatment. I am very fortunate to have a patient profile set up at the hospitals here so they are fully aware of my treatment plan. I was only diagnosed in November and have had only one IVIG so far. Another treatment scheduled for Monday.

Lisa

 

lisamccoleman Message
20 Jan 2018, 01:58 PM

Hello fellow Canadian... There are so few of us SCLS patients in Canada that I wanted to extend a greeting from Ontario.  I am glad to hear that you have started IVIG. It is what stabilized me and many others here in the community.  Please feel free to connect with me if I can be of any help with the journey you are on.

Blessings,

Lisa

L Message
21 Jan 2018, 02:19 PM

Thank you for reaching out Lisa. I am in Newfoundland, and so glad to find someone from Canada as well. It is a very hard syndrome to deal with both physically and mentally.  Having this site to check and having feedback makes the process less isolating to deal with.

Lisa

 

 

josee Message
24 Jan 2018, 01:46 AM

Bonjour du Quebec.

Mon nom est Josee, j'ai 47 ans. j'habite au Quebec, dans la région de l'Abitibi. J'ai été dagnostiqué SCLS en 2006, je recois des traitements d'immunoglobuline depuis 2008. la fréquence est a chaque 3 semaine. je vais très bien.  Contente de voir d'autres personnes du Canada. Peux etre que nous auront l'occasion de nous rencontrer un jour. j'espère que tout va bien pour vous.

josee Message
24 Jan 2018, 01:49 AM

GOOGLE TRANSLATE:
 
Hello from Quebec.

My name is Josee, I'm 47 years old. I live in Quebec, in the Abitibi region. I was diagnosed with SCLS in 2006, I have been receiving immunoglobulin treatments since 2008. The frequency is every 3 weeks. I am doing very well. Glad to see other people from Canada. May we be able to meet one day. I hope everything goes well for you.
 
 
 
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Josephite Message
24 Mar 2018, 02:12 AM

Welcome L. My husband has SCLS. We are located in Alberta.