nicholeu

Activity

• Common Variable Immunodeficiency
  

  Frustrated

  Posted by: nicholeu

  Last Reply: LittleBit 11/27/2016

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  My repeat scans for my lymphadenopathy was denied. I went to get the scan today and found out. It's now pending peer to peer from my doctor. What do u all do about work??? I work 5 days a week. I work regular business hours and am out of vacation time. I've had one week that was actually spent on vacation the rest has been used up with doctors visits, scans, tests, biopsies etc. (I get 3 weeks) And it's only halfway through the year. It's very frustrating. I get one Monday off every three...

• Common Variable Immunodeficiency
  

  Is hizentra low IgA?

  Posted by: nicholeu

  Last Reply: tortoiseuk 09/04/2016

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  Hi I was wondering what you all know about the IgA content of Hizentra. I got a phone call from the company today. My order is for hizentra SQ. I thought I was going to need IV but apparently my doctor changed her mind. From what I've read seems SQ had less risk of systemic reactions.... But I'm wondering about the IgA content as my IgA is low and I'm told I need a low IgA product. Anyone on this brand who is willing to share their experience with it would be greatly appreciated. 

• Common Variable Immunodeficiency
  

  Discussion Comment

  Posted by: nicholeu

  Posted: 07/22/2016

  nicholeu commented on the discussion lamotrigine induced CVID.

• Common Variable Immunodeficiency
  

  Discussion Comment

  Posted by: nicholeu

  Posted: 07/16/2016

  nicholeu commented on the discussion It's official -- CVID.

• Common Variable Immunodeficiency
  

  Discussion Comment

  Posted by: nicholeu

  Posted: 07/16/2016

  nicholeu commented on the discussion It's official -- CVID.

• Common Variable Immunodeficiency
  

  It's official -- CVID

  Posted by: nicholeu

  Last Reply: nicholeu 07/16/2016

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  I got my vaccine challenge results today. No response at all to any of the subtypes of the pneumovax. With the low A, G, and M we have the diagnosis. I'm relieved to know and a little nervous about what's next. The immunologist said the next call I'll receive will be to set up infusions. She said likely Gammagard IV. She said because of my low A I will need specific products. I'm worried about side effects. Worried of having a reaction. Worried it'll make me feel worse. I don't feel bad now....

• Common Variable Immunodeficiency
  

  Discussion Comment

  Posted by: nicholeu

  Posted: 07/14/2016

  nicholeu commented on the discussion Appt with immunologist tomorrow.

• Common Variable Immunodeficiency
  

  Appt with immunologist tomorrow

  Posted by: nicholeu

  Last Reply: nicholeu 07/14/2016

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  Supposed to get the results of my blood work (vaccine challenge) tomorrow. Last I checked the post vaccine results weren't back. I had the drawn last Friday. Not sure what's taking so long. I hope I don't go to this appt and not get any results. Assuming I get results and get the dx of CVID, any advice on what questions I should ask or what I should expect bring the next step?? I also should be getting my repeat scans of my abd neck and chest. Busy month. Hoping nearing the end to where I...

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  Joined New Group

  Posted by: nicholeu

  Posted: 07/12/2016

  nicholeu joined the group Common Variable Immunodeficiency.