IUBio

hypogammaglobulenemia (treatment/newsletter)

Sonia Vohnout vohnout at wormhole.mmsi.com
Wed Sep 6 15:02:33 EST 1995


Donna Herrell (dporter at sky.net) wrote:
: >Sonia Vohnout <vohnout at wormhole.mmsi.com> wrote:
: >>Is anyone in this newsgroup familiar or has this immunodeficiency?
: >
: >>I live on antibiotics and GammaGuard Infussions.  It is not a fun
: >>life.
: >>Does anyone out there have similar problems or has suggestions to 
: >>help me improve my current health condition?


: Sonia, Richard

: 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 did not see improvement until I was recieving infusions bi-weekly and at a 
: dose of 15 grams each. 
: Many physicians are not aware that the half-life of immuglobulin and IgG 
: levels do not correlate with immune functioning. In the US most infusions are 
: done every 4 weeks, the "lucky ones" 3 weeks. 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. 

Donna, Richard:

I get 15 grams every 4 weeks.  I weigh only 106 lbs (I am a petite person).
My levels of IgG (without infusions) are around 230.  I have no IgA and few IgM.
Unfortunately, I also have anti-IgA which increases the likelihood of a reaction
I am now 31 years old.  I have always been a bit weaker since childhood,
but like I said in my news posting, I started having real problems during my
second pregnancy and when my first child brought all the viruses home from 
day-care.  I started getting infusions only 1 year ago, even though I have
been diagnosed with this illness since 1991 (I only had recurrent diarrheas and
sinus infections, but not serious like now).


: Add to that the insurance problems for this expensive treatment. 
: Some insurance companies require a total IgG level of 300......
: 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. 
: So one needs an immunologist/physician to not only look at levels.
: CVID or HGG, is a disease of speciality.

We have not done any studies on the subclasses.  My B cells do mature, they
just don't work very well.  I also have normal levels of T cells.  My doctor
does not see any benefit to know the subclasses.  What good is this information
to you?  I would also like to know it, to see if I can correlate some of
my problems to where the deficiencies exist.

: 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), you will 
: continue to get infections and the replacent therapy will not have a chance 
: to "boost" your system. If you are not getting enough you will actually feel 
: worse then better....which may be what you are going thru now.

I still have not found any correlation between between time between infusions
and getting sick.  Since I am always sick, it is hard to tell the difference.
However, I do have cough (specially in the morning), every day of my life.
Everyone at work know I am in the office, because they can hear my coughing.
It drives my husband crazy, all this coughin and blowing my nose!!
My older son (almost 3) already knows the name of my doctors (this is scary).
My sinus infection is controlling my everyday life and the ENT I have doesn't
even understand my problem (he thinks I have allergies).  He still did surgery!
Now they want to do surgery again, because I am worse then before surgery.

: Secondly, CVID/HGG patients need stronger antibiotics and for a longer 
: duration. Biaxen, Zithromax can be particularly effective.
: Immune deficient patients are particular prone to mycoplasms which many 
: antibiotics won't reach. 
: Good therapy with cephalasporans such as Ceftin can be helpful with infections
: such as sinusitis especially. 
: A good example of sinusitis treatment is The Diagnosis and management of 
: sinusitis from the BMJ, volume 309 , Nov 26 1994.
: This undertreated problem in myself caused much morbidity and complication. 
: I didn't improve until I stayed on Ceftin a full month.

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

I have been beging for a different antibiotic.  One doctor gave me Cipro.  
Didn't make much of a difference, it did get rid of the pseudomonas and
haemophilus.  Now I am back on Augmentin, because I still have strep.  I am
trying to persuade one doctor to prescribe the Biaxen of Zithromax (regardless
of the cost).  What is a nebulizer?  I never get fevers.  I wish I got them,
that might mean my body is trying to get rid of the bugs!  But I just feel
rotten and wish lots of sinus pain.

: If one does not feel better after these measures, there are some secondary
: illnesses and disorders common in CVID. The colon (Giardia etc.) and 
: malabsorbtion problems are common, some autoimmune diseases and even CMV and 
: other herpes virus activation. 

I suffer from malabsorbtion and diarrheas.  It comes with the territory. Sigh...

: I can't say that I am running marathons now with this therapy or that I even
: feel good. I have superimposed Lyme Disease on top of the deficiency.
: I can say that before the IVIG, I was bedridden and am not now and would 
: probably have semi-normal health if it wasn't for the later.

With or without IVIG, antibiotics or sinus infections I try to lead a "normal"
life.  I work, have children, a husband, I exercise (3-4 times a week).
All I ask is to get rid of this sinus infection.  I think I can live with
the IVIGs.

: 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. 
: I am hoping as health allows to create  a U.S. chapter for adults with 
: hypogammaglobulinemia. If you are interested in being on the list, email me 
: at the address below. I am also glad to discuss any issuses of the illness.

This is wonderful information!   There is also the Immunodeficiency Foundation
in Maryland.  Their phone number is 410-321-6647.

: -Donna



: ______________________________________________________________
: Donna Herrell                        Lyme Information Resource
: <dporter at solar.sky.net>	      http://www.sky.net/~dporter/lyme1.html
: <DHERRELL at aol.com>

Sonia Vohnout

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INTERNET: vohnout at mmsi.com




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