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Gareth update

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#1 Margaret


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Posted 10 January 2014 - 03:18 PM

Hi Everyone,


In Dec, Gareth went into anaphylactic shock during his monthly IV Ig infusion.  The Immunologist did not think the reason was the infusion itself and wanted to try again this past Monday.  Gareth had 50 mg of Benadryll, Zyrtec, and IV steroids before starting.  Infusion rate was started at 30 (instead of 60) and the highest it was upped was 80, instead of 100. Well, halfway through the second bottle, his BP  started dropping quickly and got to 84/24 before going back up.  Another night in IICU. Today, we had to see the Cardiologist per Immunologist request.   His heart is fine, thank goodness, but he wanted to know the reason for his *clubbing* of fingernails.  What?  Huh?  :emoticon-dont-know: He said it's usually seen in Interstitial lung disease, lung cancer,  or emphysema?  :emoticon-dont-know:  :emoticon-dont-know:


So, all you Sclero people with Interstitial lung disease, do you have clubbed fingernails?  Does anyone have clubbed fingernails and no ILD?


Thanks everyone -- you're such a wealth of information and I so much appreciate your helpful insights.


Margaret   :thank-you:

#2 Joelf


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Posted 10 January 2014 - 11:27 PM

Hi Margaret,


Thanks so much for Gareth's update and I'm sorry to hear that there was still a problem with his IVIg infusion.


I have Interstitial Lung Disease but I don't have clubbed fingers; coincidentally, it was one of the first things I looked for when I foolishly googled Idioopathic Pulmonary Fibrosis and frightened myself witless! I had my fingers checked by The Royal Brompton Hospital when I first had an appointment.  However, my sister-in-law doesn't have ILD, but does have clubbed fingers; during a bout of pneumonia four years ago she was hospitalised and they mentioned her clubbed fingers, to which she replied that she'd always had them (obviously a hereditary trait) but they're not very pronounced. Of course, this does illustrate how symptoms can vary from person to person and clubbed fingernails are not necessarily always indicative of ILD.


Perhaps you could mention it to Gareth's rheumatologist at his next appointment so that he's aware of it and could organise any Pulmonary Function Tests, if necessary?


Kind regards,

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#3 Amanda Thorpe

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Posted 13 January 2014 - 01:25 AM

Hello Margaret


I am sorry Gareth has so much going on again! I do hope things settle down for you both and please keep us informed as we all like to know how Gareth is getting on.


Take care.

Amanda Thorpe
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#4 Sweet


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Posted 15 January 2014 - 01:59 PM

Hello Margaret


I'm so sorry to hear of the troubles you and Gareth are going through. That must have been quite frightening. 

I don't have clubbing, but I do know of a lot of sclero patients that do.

Wishing you the best.

Warm and gentle hugs,

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#5 miocean


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Posted 16 January 2014 - 09:00 PM

Hi Margaret,


How is Gareth?


I have no clubbing with my lung disease and fibrosis.




:emoticon-hug:  :emoticon-hug:  :emoticon-hug: Hi Gareth!! :emoticon-hug:  :emoticon-hug:  :emoticon-hug: 




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#6 Shelley Ensz

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Posted 20 January 2014 - 12:39 PM

Hi Margaret,


I am very sorry that Gareth has had anaphylactic shock twice now with his IVIg treatments. What a scare that must have been for both of you!


If he doesn't have heart or lung involvement of any kind, could it be related to his Downs Syndrome in any way?  I suppose one huge question is whether or not his hands have always been that way, or if this is something new.  If it's brand new, then you will probably want to have him undergo more testing to make sure everything is ship shape because, like his doctor mentioned, clubbing is most frequently associated with heart or lung issues.


I'm worried about the IVIg reaction. Am I correct in assuming that he will not be having any more treatments?  And if so, is there any further care plan?  Hopefully he may have already had enough treatments to turn things around for him a bit, sometimes just a few treatments can bolster the immune system for a long time to come.


I'm sending some extra hugs just for Gareth --


:emoticons-group-hug: :emoticons-group-hug:

Warm Hugs,

Shelley Ensz
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#7 debonair susie

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Posted 24 January 2014 - 08:46 AM

Hi Margaret and Gareth,


I read your thread shortly after you posted it, gave thought to it and then JUST got back to post.


Please know you have BOTH been close in thought all this time :emoticon-hug:  :emoticon-hug:


When you have the opportunity, please let us know how each of you are doing? :thank-you:

Special Hugs,

Susie Kraft
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