• Anonymous
      January 9, 2011 at 9:59 pm

      Hello all,

      Haven’t posted in a while, but always on site keeping up with everyone and finding out new info, hope this new year is a healthy one for us all.

      I am on maintaince of IVIG every 8 weeks for the last 4 yrs, The hospital bills are killing us and that is after the 80% that medicare pays. So i decided to wait and go an extra 4 weeks to make it 3 months this time. well about 2 weeks befor my treatment i started getting a headache every day and they got worse as the days went, I had my treatment on friday the 7th and they used flebamma (never had that brand befor ) Its sunday night and i still have the headache,

      not sure if it’s because i let the ivig get out of my system or what, ready to call my neuro and get brain scan,

      any input would be great


    • Anonymous
      January 10, 2011 at 10:32 am

      Sometimes, I got headaches from the ivig. Perhaps, you want to find out what you had in the past if it was premixed etc. All the pre/post infusion stuff may help as well, like drinking liquids, benedryl, rest, etc. may help..
      It is possible its unrelated to the ivig, like seasonal sinus stuff???

    • January 10, 2011 at 2:30 pm

      I have had headaches with IVIG, certainly have had Flebogama as well.
      Tylenol was sufficient to stop them. Might have had 3 or 4 times after IVIG session over a period of 4 days.
      I haven’t had them anymore. I’m on Kiovig now.

      About cutting out on IVIG or decreasing the frequency. I don’t recommend it.
      Every patient is different I know, but something could trigger the OMINT system and levels of linfocytes could get too high sending you into an onset.
      It happened to me when I stopped for 2 months.

      Take care,


    • Anonymous
      January 10, 2011 at 5:16 pm

      what is omint system ?

    • Anonymous
      January 10, 2011 at 5:18 pm

      and linfocytes

    • January 21, 2011 at 4:41 pm

      Don’t know how OMINT ended there, sorry. I meant to say immune system.

      Linfocytes are our white blood cells. They are the ones who attack the myelin sheath ([url]http://en.wikipedia.org/wiki/Myelin[/url]) of our nerve cells. Broadly speaking, they are responsible four our CIDP/GBS. At the same time, they protect our bodies from intruders like viruses, bacteria, etc…We can’t live without them but the more numerous they become the weaker we feel.



    • Anonymous
      January 31, 2011 at 10:48 pm

      I think mpocciot means lymphocytes.
      Are you premedicating?

      I was premedicating (benadryl [doesn’t work for me at all even for allergies anymore] tylenol and hydrating very well) and still got reactions after a while. It got so bad I stopped treatment last year because I was sicker from infusions than CIDP. Migraines were so bad I was vomiting. I’ll probably have to go back on infusions quarterly to help with a flareup and to help this friggin medicare gap (if I have outpatient infusions I go instantly into catastrophic and avoid thousands in prescription copays).

    • Anonymous
      February 1, 2011 at 12:13 am

      Water, water, and more water. I drank lots before, during and after my treatments. Headaches went away.


    • Anonymous
      February 1, 2007 at 2:55 pm

      Greetings, all.

      A patient here in the UK has been told that there’s a particular shortage of Flebogamma. Has anyone else found that to be true? We’ve had a shortage of immunoglobulin in general for the past year, but this is a single brand that we’re being told is unavailable.