hypogammaglobulenemia (treatment/newsletter)

Sonia Vohnout vohnout at wormhole.mmsi.com
Wed Sep 6 15:19:51 EST 1995

Richard P. Bainter (pug at arlut.utexas.edu) wrote:
: In article <42crdj$3n0_004 at dporter.sky.net>,
: Donna Herrell <dporter at sky.net> wrote:
: >I have hypogammaglobulinemia and there are some important issues to 
: >be addressed to live a more normal life with this disease. 
: >Most importantly is the recieving of adequate IVIG and antibiotics. 

: I don't know if I agree with this. I think that once you are stable, you
: will be fine, as I am, but after being stable, I live wonderfully with
: regular maintance of IVIG.

: >I did not see improvement until I was recieving infusions bi-weekly and at a 
: >dose of 15 grams each. 

Doctors are still trying to get me there.  Unfortunately, I have a rotten
apple in my list of doctors, who still thinks I have allergies and has 
managed to neglect my case.  My immunologist is wonderful!  He will see me
anytime I need and works with me and other immunologists to get me stabilized.
Unfortunately, my sinus problem is still there.  We will try infussions with
a different manufacturer.  We will try switching from GammaGuard to 
Sandoglobulin (or something like that).  We will still try every 4 weeks
15 grams.  Unfortunately I am at risk of an anaphylaxis due to my anti-IgA

: I did not see improvment until I received 25 grams every 6 weeks and was
: able to get rid of the large section of infection (my lung) via surgery.
: I do drag when I get to the 5 week mark though. This amount was found by
: a European formula using your body weight to compute. (I don't know it
: anymore unfortunately.) After getting that, we did repetative tests to
: decide what I could take for what period of time. My levels are just
: below normal at the 6 week mark.

Richard, why did you get part of your lung removed?  I suffer from
bronquitis quite a bit, but lung x-rays and breathing tests show that I am
more then fine.  

Have any of you gotten pneumonia?  I haven't yet.

: >In the UK where the primary 
: >immune deficiencies (in adults) are more common, studied and well 
: >understood...my dose is par with what most patients receive. 

: When I looked into alternatives to IVIG, I read lots of European studies
: and what not. I unfortunately found that what I was getting was my best
: bet. *sigh*

: >Add to that the insurance problems for this expensive treatment. 
: >Some insurance companies require a total IgG level of 300......

Lots of european studies are not done with much knowledge of statistics.
Usually they only use a few subjects.  However, they are less conservative
with their approaches and patients sometimes benefit from that.  I wouldn't
mind trying something new if it improved my quality of health.  Maybe they
have more patients with this disease becuase doctors check for it.  I have
several frinds who have similar problems as me, but their doctors refuse to
check their immunoglobulin levels!!  Ignorance is sometimes great!!  I hear
it is quite common to be IgA deficient.  IgG deficiency is less common, but
sometimes people do fine with low levels of both.  

: Gosh, I'd like levels that high. *smile*

I had to battle with my insurance company too.  First to get my infusions,
then to get GammaGuard, it is expensive and they wanted me to take their
cheap stuff, which increases the likelihool of a reaction in me!

: >My total IgG was over 600, yet I had recurrent infection, sinus damage, 
: >bronchectis etc. It was found I had high Ig1 (IgG and IgA can be broken in 
: >subclasses) but no IgG4, little IgG2 and borderline IgG3. My IgA is low normal 
: >and my T-cells are low normal. 

My doctor says that IgGs are broken into %60 or one and the rest of the others.
Sorry I don't remember the breakdown.  When we get the IVIG you get an even
distribution of all.

: I should find my exact numbers, all I know for certain is next to zero
: production of IgG. Until recently, I didn't even register on the tests
: when they wanted to test me. (Gosh, skipping a treatment when they are 6
: weeks apart will really get me down.)

: >CVID or HGG, is a disease of speciality.

: There is a wonderful doctor in Houston at Baylor College of Medicine
: doing research on it. I believe his name was Dr. Huston (of all things
: in Houston). Although not a great patient doctor, they did find out more
: and tell me more than anyone else had. As well, he and my current doctor
: are very good about listening to me about what is wrong and what I need
: as far as medication.

: >I feel a "drop off" (more fatigue, cough etc) at day 12 post infusion. 
: >Half-life of IVIG 24+ days means nothing to my immune system or anyone elses. 
: >The level starts decending day 6  (I believe) and if the trough is too low 
: >(you aren't getting a high enough dose...or frequency, or both),

: I will go with higher dose over frequency anyday! It's annoying enough
: to have to do IV, as opposed to taking a daily pill or something, that
: I don't want to do it anymore than absolutely necessary.

: >you will 
: >continue to get infections and the replacent therapy will not have a chance 
: >to "boost" your system.

: I am very glad to be at a "stable" level with my treatments. I get
: better each year as long as I don't do something stupid.

I like to travel a lot and go to weird places.  I haven't done so in 1 year.
It drives the doctors crazy.  They want me to stay here in Tucson all the time.
I grew up in Costa Rica.  I have now travelled to Africa, South America,
the South Pacific, the Caribbean and Europe.  I still haven't tried Asia.
Because of work, I might go to Africa and Chile again.  Other then that, I
try to live healthy.  Oh, everytime I cross the border to Mexico, just breathing
their air I get Montezumas Revenge!   Sigh....  My husband is Mexican and
everytime we visit his family I get so sick.  It is terrible.  At least now we
know why and their family is extra careful with what they give me to eat.

: >If you are not getting enough you will actually feel 
: >worse then better....which may be what you are going thru now.

: I had this exact problem when I was receiving IM years ago. Of course it
: didn't help that my body started synthesizing it immediately. (Test the
: day after a treatment showed 0 level of IgG!)

Richard, what is IM?

: >Secondly, CVID/HGG patients need stronger antibiotics and for a longer 
: >duration. Biaxen, Zithromax can be particularly effective.

: I have to admit that when I do get antibiotics (none in the last 2
: years!!!), that I do require much stronger antibiotics, and possibly a
: booster IVIG dosage. Admitedly, these are damn expensive too. (I was at
: over $100 a day for each prescription for a while.)

: >I am now off nebulizer (use an inhaler occasionlly) and steriod sprays and not 
: >needing surgery on sinuses, fevers stopped etc. 

: I never was any good with the nebulizer, which is probably a factor in
: why the lung surgery was necessary, and I use an inhaler occasionally.
: (Usually in spurts of 4 times a day during problems and none for months.)

: >I can't say that I am running marathons now with this therapy or that I even
: >feel good.

: I can say that I feel good. When I get enough excercise in the summers,
: swimming and what not, I feel even better! Definately not much running
: with the lung condition. (Although I have 80% functionality.)

: >By the way there is a good newsletter for CVID patients and physicians that 
: >comes from the U.K. I handle the U.S. subscriptions...which are free. 
: >If you are interested in being on the list, email me at the address below.

: That'll be off to you personally instead of posted.

: Ciao,

: -- 
: Richard Bainter          Mundanely     |    System Analyst        - OMG/CSD
: Pug                      Generally     |    Applied Research Labs - U.Texas
:    pug at arlut.utexas.edu     |     pug at eden.com     |     {any user}@pug.net
: Note: The views may not reflect my employers, or even my own for that matter.

Sonia Vohnout

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