Hyper IgE syndrome

[carolh]

Hi I've recently joined the group so thought it was about time I introduced myself! I'm carol and I live near Glasgow in Scotland. I was diagnosed with a primary immune deficiency in 2009 and then this was further diagnosed as Hyper Immunoglobulin e syndrome in 2011. 

I am very lucky as since diagnosis and treatment I generally keep well and lead a normal life. Anyway it'd be great to learn more about others in the group. 

[john]

Hi Carol, I'll start the ball rolling by saying "welcome" to our little corner of the net!
I'm rushing out right now, but I'm sure we'll speak again!

[s162216]

Hi Carol and welcome to the forum!

Its great that you've found out you have Hyper IgE, but even better that it doesn't affect your life. I have CVID myself, and was diagnosed in 2010, but like you it doesn't really affect me too much now since I started on IVIG about 3 years ago, apart from getting the occasional upper respiratory infection. It'll be nice to get to know you as the more the better with a forum!
I don't know how many other members here also have Hyper IgE, but I do now that prickles (Sue's) daughter Caitlin has it so you might want to contact her if you want to talk with somebody else who has experience of it.

Thanks,

Sam

[glowing]

Hi Carol. Welcome to the forum from me too.

I, like Sam, have CVID and was diagnosed about eighteen months ago. I started having IVIG every three weeks for about a year and then changed to subcut. I do this myself at home weekly, with a lot of help from my husband. I prefer sticking the needles in my tummy and my treatment only takes an hour. It used to take four hours when I attended the hospital for IVIG. Anyway, things are working well for me also, apart from still having quite severe asthma that restricts me somewhat.

I'm looking forward to reading your posts as it's always nice 'meeting' new members.

Glo

[carolh]

Hi all and thanks for your replies. I thought id posted a reply days ago but I guess it didn't work, oops!
Glo I was also on 3 weekly Ivig from 2009 until May last year. My immunologist wanted me to try without it and so far so good. I'm not convinced I'll be off it permanently but am doing well for now.

[glowing]

Fingers crossed you continue doing well.

Glo

[prickles]

Hi Carol

Sue here Caitlin's mum. Welcome to the board sorry not been on for a bit but I have no internet connection in my temporary home (got flooded in February). I am glad you are keeping in good health, Caitlin is in hospital at the moment she has been in 2.5 weeks so far but has just been diagnosed with osteomyelitis so looks like another month of being an inpatient! Caitlin unfortunately has had a rough few years. She started on immunoglobulin 7 years ago and done it subcutaneous for a number of years but reverted back to IV Easter last year it seems to work much better for her. This is the first systemic infection she has had and when she came in she was told it was most likely flu but changed their minds when she couldn't breathe and had to go on oxygen and her blood grew MRSA they also decided she had pneumonia.

We have been lucky in that she was diagnosed when she was 2 and hasn't had the problems that some have had. She does have all the classic symptoms and the STAT 3 genetic mutation it seems that hers is a spontaneous mutation as no other member of the family has the syndrome.

Feel free to message me if you want to chat, may not respond immediately because of internet issues but will pick it up.

Sue

[carolh]

May 21, 2014 14:06:34 GMT prickles said:

Hi Carol

Sue here Caitlin's mum. Welcome to the board sorry not been on for a bit but I have no internet connection in my temporary home (got flooded in February). I am glad you are keeping in good health, Caitlin is in hospital at the moment she has been in 2.5 weeks so far but has just been diagnosed with osteomyelitis so looks like another month of being an inpatient! Caitlin unfortunately has had a rough few years. She started on immunoglobulin 7 years ago and done it subcutaneous for a number of years but reverted back to IV Easter last year it seems to work much better for her. This is the first systemic infection she has had and when she came in she was told it was most likely flu but changed their minds when she couldn't breathe and had to go on oxygen and her blood grew MRSA they also decided she had pneumonia.

We have been lucky in that she was diagnosed when she was 2 and hasn't had the problems that some have had. She does have all the classic symptoms and the STAT 3 genetic mutation it seems that hers is a spontaneous mutation as no other member of the family has the syndrome.

Feel free to message me if you want to chat, may not respond immediately because of internet issues but will pick it up.

Sue

Hi sue

Thanks for your message. How is Caitlin doing now? Hope she's a bit better. My immunologist is currently waiting on tests results before deciding what the plan is for me, I'm wondering if I should be back on infusions but time will tell! Hope you and yours are doing ok and sorry to hear about the flooding, that's awful. Will you be able to move home soon? Are you in the south of England?

Carol

[prickles]

Hi Carol

Caitlin is doing a bit better although we had another setback last week, she has a severe throat infection of some sort now, but her osteomyelitis does seem to be improving. We are in discussion regarding further antibiotics the Consultant wants to go onto oral Linezolid but Caitlin wants it IV as she is having it now, IV's do seem to work better for her in the long run.

Our house is nowhere near ready to return too, we are looking at somewhere around Christmas time. We live in Moorland on the Somerset Levels I have been on the TV and radio a number of times. Yesterday the Earl and Countess of Wessex made a visit to us which gave the village a bit of a boost.

Hope your test results don't take too long.

Sue