Skip to Content

Join the 'Primary Immunodeficiency Syndrome' group to help and get support from people like you.

Primary Immunodeficiency Syndrome Questions

We found 13 questions associated with the 'Primary Immunodeficiency Syndrome' topic.

Gammagard S/D - Insurance company is making an issue of the fact that it is found to work by the FDA

Posted 5 Jan 2011 by John Duhon 3 answers

... calling it a specialty drug and asking that it have extra costs. (Company as yet doesn't know how much the costs will be) Not only is this different than the insurance coverage that I had before but it is threatening for my well being. The FDA in countering my questions assured me that ...

Primary Immunodeficiency Syndrome - I have Hypogammaglobulinemia and I live in the DFW area of?

Posted 17 Jun 2013 by DeMott 2 answers

... Dallas, TX. I am looking for a doctor who has experience with this type of experience. Thank you

I am considered for Ig therapy. What have your experiences been on Hizentra?

Posted 7 Oct 2013 by mark1994 3 answers

Were you newly diagnosed or switched? Do you administer it yourself? Are you considering switching again? If yes, why?

Does anyone else form hard, calcified nodules under the skin at the infusion sites with Hizentra?

Posted 8 Aug 2011 by kathyhanson 1 answer

In March switched from Vivaglobin to Hizentra for hypogammaglobulinemia related to multiple myeloma. No problems with Vivaglobin, but +/- once a month I form these nodules that last a couple of months and then go away. Two weeks ago switched from 3-site to 4-site, hoping to stop the nodules. ...

How is Cuvitru administered?

Posted 30 Nov 2016 1 answerFAQ by

How often do you get your blood tested after getting infusions?

Posted 31 Aug 2017 by Smallplanetco 2 answers

I've had 4 infusions of Hizentra but no where can I find how often blood should be tested to monitor how it's working. Any feedback appreciated. MY doctor is over 2 hours away & his nurses won't ask him this question!!! I see him in 3 weeks but am going to Cleveland Clinic ...

Leaks around needles?

Posted 17 Aug 2013 by fishrick56 2 answers

I sometimes get the hizentra leaking back out where the needle goes in the skin. I'be been doing these treatments since December of last year. They really work well for me. I have not been hospitalized at all with any COPD flareups since I started.

Just did my first dose of Hizentra yesterday and didn't feel so well today. I weighed and had gained

Posted 23 Feb 2016 by Cmcarroll 1 answer

... SIX POUNDS in one day! I had to do a second round of Hizentra today to complete a loading dose so I'm praying that doesn't result in another 6 pounds added by tomorrow. Anyone else have sudden weight gain with Hizentra? Thanks

Which is safer, gamunex or gammaguard IV?

Posted 9 Mar 2013 by DTALLEY2 1 answer

I have had 4 heart blockages, have asthma, bronchitis,1 blood clot in lungs and 2 in left leg..all at different stages in my life with the exception of the 4 heart blockages... I had those at one time and I have stents. Which medication would be the best for me? I am currently on Gammaguard IV ...

Why would hizentra decrease my IgA and IgM considerably? They were normal when I began tx?

Posted 13 Feb 2016 by bethanycn 1 answer

My IgG was only abnormal. After 2 months, my others dropped over half of what they were prior to tx. I also had new onset of a major seizure. ..broke my nose, hospitalized for 3 days. Dr said to stop infusions... now what? ???

5 months SC Hizentra increased infusion time to 3 hrs due to side effects?

Posted 30 Apr 2017 by deborahscarfe271148 0 answers

3hrs after infusion I got excruciating lower back pain - requires lots and opioid pain relief. What does this indicate? Have delayed next infusion. Many thanks

How long before IGG numbers went up when you started taking Hizentra subcutaneously? I have cvid and

Posted 22 Jul 2017 by doremus 0 answers

... just started Hizentra after 9 years infections every other month. I put vaseline lightly inside each nostril several times a day, not blocking breathing but on sides. And find by blowing gently several times a day, wiping nostrils out with kleenex gently and reapplying some vaseline again on ...

Ask a Question

Further Information

Related Condition Support Groups


Related Drug Support Groups

Hizentra, Gammagard, Gamunex, immune globulin intravenous, Gamunex-C, Privigen, Vivaglobin, Hyqvia, Octagam, view more... Carimune, Cuvitru, Gammagard S / D, Gammaked, immune globulin intravenous and subcutaneous, Bivigam, hyaluronidase / immune globulin, Flebogamma, Gammar IV, Gammaplex, Panglobulin NF, Gammar-P IV, Polygam S / D, Sandoglobulin, Carimune NF, Venoglobulin-S 5%, Venoglobulin-S 10%, immune globulin subcutaneous, Iveegam En, Panglobulin, Gamimune N 10%, Gamimune N 5%, Gamimune