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.
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.
>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......
Gosh, I'd like levels that high. *smile*
>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.
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.
>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!)
>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.