New era for ME/CFS research as top cytokine study attracts media headlines
The immune systems of patients who have recently developed ME/CFS look markedly different from those who have been ill for much longer, according to a major new study from Drs. Ian Lipkin and Mady Hornig at Columbia University. This shift in immune function hadn’t been seen before.
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Hizentra for 2 months

Discussion in 'General Treatment' started by rebar, May 21, 2013.

  1. rebar

    rebar

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    I've been on subcutaneous hizentra now for 2 months. I was prescribed hizentra because of blood markers indicating a dysfunctional immune system. Other associated issues include a reactivation of EBV and HV6, numbers are higher on the EBV. My salivary glands directly under my jaw have been enlarged for over 2 years and at times there is corresponding pain in my cervical neck lymph glands.
    I have come across references that indicate hizentra is prescribed by several ME/CFS doctors including Klimas. My doctor specializes in ME/CFS and I have struggled with it for 15 years the last 3 have left me living in my bed or on my sofa.

    At about 4 weeks in I did have a couple of improved days and have continued to have a few days per week that are marginally improved.

    Some of the side effects from hizentra for me include an increase in muscle pain in my legs and an increase in pressure and pain at the base of my skull. I am having some increase in cognitive problems and at times an increase in episodes of depression. These I want to believe are positive indications, maybe my immune system is doing something.

    I would love to start a conversation on hizentra and its efficacy.
    Who else is using hizentra and what effect is it having on your symptoms.
    If it helped, when did you notice the improvement?
    Can it be used in combination with an antiviral?
    Any comments or observations are welcome.
     
  2. Marianarchy

    Marianarchy

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  3. Ema

    Ema Senior Member

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    Midwest USA
    I started Hizentra at the beginning of the year due to low IgG levels, specifically in subclasses 3 and 1. I infuse 8g a week now but started lower and also tried higher doses.

    I think it has definitely helped me but it wasn't a magical overnight sort of improvement. It was much more gradual but I am absolutely more active this year than last. At this point, I consider it an important part of my anti-infection arsenal.

    I also take antivirals, primarily oral Valtrex, 1 g/4x day and most recently cidofovir IVs. I also take antibiotics for a Lyme infection.

    My LLMD prescribes the Hizentra though it was quite a process and I think I may be the only one of her patients on it. I was definitely the first.

    I think it may have benefits to the ME/CFS population that have just barely been explored. Not only can it help correct immune deficiencies but it has also been shown to halt auto-immune attacks. I know someone who halted a Hashi's attack on her thyroid using SCIG.

    I think that there may be some clinical trials going on now and hopefully they will show benefit and help more people get access to the treatment. Right now it is an insurance nightmare trying to get it covered and approved.

    Ema
     

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