I got the latest results on my IGG levels yesterday. It's been 6 months
since I started the IVIG treatments. At first I was getting it every 4
weeks but when the dr saw that my blood tests were not really showing
an increase in my IGG levels he suggested we switch to every 3 weeks.
The first blood test after we switched were greatly improved. My serum
level was normal! And 3 of the 4 sub-classes were normal as well!
Subclass 1 was still low but closer to normal than it was before! This
is all very exciting.
I wish I could say I was feeling as better as the test results show I
should. I haven't (knock on wood) had anymore sinus infections but have
been fighting UTI's for 2 months and anemia. Those two have had me
feeling really crappy to say the least. And very very fatigued. And I
had started having reactions to the IVIG treatments which lasted up to
5 days! Last month I had a 5 day reaction to the IVIG followed by 2
weeks of trying to get the right UTI treatment and by then it was time
for another IVIG -- so that's not a good program by any stretch of the
imagination. Until yesterday I was starting to think that if this is
how I was going to feel and not get any benefit from the infusions, why
bother. But then I get the great blood test results and with
yesterday's infusion I had no reaction! I started taking benedryl about
an hour before the infusion started and also increased my medrol the
night before and the morning of. Only my neck turned red this time. I
didn't have the nausea, itching and headache afterwards...not even
today!
I have a rheumy and a neuro and an infectious disease doc. Two of the 3
agree that I should have a dose of IV solumedrol with the infusion as
well as the benedryl. The ID does not. So I decided to boost the medrol
on my own. (I know I know...holding out hands for a rap on the
knuckles) But not having the horrible reaction yesterday and today is
sooooo worth it! I didn't take that much more. I'm definitely going to
talk with them all about it again. They would have given 80mg of IV
Solumedrol if I had gotten it that way and I didn't take anywhere near
that. I think I took about 20 mg extra if I'm remembering correctly. I
had taken benedryl the previous two infusions which did help with the
itching but not the rest. Much better today. Of course I keep having to
remind myself that the energy is from the medrol but here's hoping that
it lasts like in the first few treatments I had. Oh -- And the right
antibiotic is helping the UTI as well.
So -- There's my update!
Cyberhugs,
DianeW
It is only with the heart that one can see rightly; what is essential
is invisible to the eye. --Antoine de Saint Exupéry
nikki - 16 Sep 2005 20:37 GMT
Wow Diane, now that's good news!
Also very interesting, I'm afraid I missed part of the story with the
infection and all but I understand that's much better too?
What I would like to know, what's an IVIG treatment? Is that Remicade
like? Or is it a totally different thing?
Nikki
> I got the latest results on my IGG levels yesterday. It's been 6 months
> since I started the IVIG treatments. At first I was getting it every 4
[quoted text clipped - 44 lines]
> It is only with the heart that one can see rightly; what is essential
> is invisible to the eye. --Antoine de Saint Exupéry
DianeW - 17 Sep 2005 00:22 GMT
Niki - IVIG, as my doctor calls it, is immune globulin intravenous. The
manufacture calls it "IGIV" It is also known as pooled human gamma
globulin or, simply, gamma globulin. It's a blood product. Immune
Globulin Intravenous has multiple mechanisms of action, which vary
depending upon the therapeutic use of the product. IGIV belongs to a
group of medicines that work by affecting a patient's immune system.
For decades IGIV has been used to treat a variety of infectious or
inflammatory diseases, as well as for the treatment of a variety of
autoimmune disorders. Its sometimes used for MS and rarely for RA. I
am getting it because my IGG levels are so low that I was getting
chronic sinus infections that were unresponsive to antibiotics. After 4
months of abx and still no cure for my sinus infecctions, I went to an
infectious disease doc who put me on IV abx which after 6 weeks cleared
the infection. He ran blood tests on me and discovered my IGG levels
were all very low. He says I've probably been this way all my life
which explains my lifelong chronic sinus infections, bronchitis and
pneumonia which of course became problematic on Enbrel. I get the IVIG
treatments every 3 weeks now and every other month he measures the IGG
levels. When I was getting it every 4 weeks the numbers weren't moving.
It's very expensive - about $7000 a month - so it doesn't make sense
to keep doing it if it's not going to help. He said it usually takes
6-12 months to start seeing an improvement. This was my 6 or 7
treatment. It wears off after 3-4 weeks so that's why he started at
every 4 weeks and then backed up to 3. If you want to read about IVIG
you can read it here at the manufactures website:
http://www.gamunex.com/Patient_World.cfm
What I have is called Common Variable Immunodeficiency or CVID for
short with all subclasses low as well.. You can read about it here if
so inclined:
http://www.primaryimmune.org/pubs/book_pats/e_ch03.pdf
It's very interesting how it may be connected to auto-immune disease.
I'm just really learning about this myself. Apparenly if you body is
lacking in the ability to make antibodies against foreign things like
bacteria, viruses and allergens, then the part of your blood, the IGG,
that should be busy doing that gets busy making auto-antibodies. That's
a very simplistic explanation but how the nurses explained it to me.
I'm sure there's a lot more involved. They say they see a lof of MS and
RA/Polyarthritis in folks with low IGG. There are 4 subclasses of IGG.
Usually people have a deficiency in one or two of the four. I am
deficient in all four. Lucky me.
My rheumy says we should be "cautiously optimistic" that the treatments
will help the RA. Of course it's not going to reverse any previous
damage even if it does. Oh and the treatments are given in an IV
infusion over the course of 4-5 hours. I have found that the longer the
infusion, the less side effects I get. So that's kinda it in a
nutshell! Big nut! LOL
Cyberhugs. DianeW
Squirrely - 17 Sep 2005 08:49 GMT
Diane W,
Good news to hear how you are doing. I hope it keeps working for you and
does a great job.

Signature
Love and hugs to all
Good thoughts coming your way too.
Squirrely Jo
> Niki - IVIG, as my doctor calls it, is immune globulin intravenous. The
> manufacture calls it "IGIV" It is also known as pooled human gamma
[quoted text clipped - 49 lines]
>
> Cyberhugs. DianeW
nikki - 17 Sep 2005 12:04 GMT
Thank you so much for your explanation Diane, even though it was a bit
of a large nut LOL ,
Nikki
> Niki - IVIG, as my doctor calls it, is immune globulin intravenous. The
> manufacture calls it "IGIV" It is also known as pooled human gamma
[quoted text clipped - 49 lines]
>
> Cyberhugs. DianeW
Diane - 17 Sep 2005 16:33 GMT
diane is really good at learning the science behind her
treatments/conditions. i found that out when we were discussing
phlebitis. she's a wealth of info!
one of the many other dianes.
Duckie - 16 Sep 2005 22:58 GMT
Now that is good news. I love hearing good news.
Duckie
> I got the latest results on my IGG levels yesterday. It's been 6 months
> since I started the IVIG treatments. At first I was getting it every 4
[quoted text clipped - 44 lines]
> It is only with the heart that one can see rightly; what is essential
> is invisible to the eye. --Antoine de Saint Exupéry

Signature
_('>
(_<_)
_
_('< -quack
(_<_)
_
__('< *QUACK!*
<_{__)
_('< "|,,|_"
(_<_)
_('< "AFLAC!"
(_<_)
Diane - 16 Sep 2005 23:36 GMT
good news, diane. i hope you start feeling better as the test results
continue to improve.
diane
Skip - 17 Sep 2005 02:12 GMT
Yay! Here's looking forward to more good news :-)
skip
I got the latest results on my IGG levels yesterday. It's been 6 months
since I started the IVIG treatments. At first I was getting it every 4
weeks but when the dr saw that my blood tests were not really showing
an increase in my IGG levels he suggested we switch to every 3 weeks.
The first blood test after we switched were greatly improved. My serum
level was normal! And 3 of the 4 sub-classes were normal as well!
Subclass 1 was still low but closer to normal than it was before! This
is all very exciting.
I wish I could say I was feeling as better as the test results show I
should. I haven't (knock on wood) had anymore sinus infections but have
been fighting UTI's for 2 months and anemia. Those two have had me
feeling really crappy to say the least. And very very fatigued. And I
had started having reactions to the IVIG treatments which lasted up to
5 days! Last month I had a 5 day reaction to the IVIG followed by 2
weeks of trying to get the right UTI treatment and by then it was time
for another IVIG -- so that's not a good program by any stretch of the
imagination. Until yesterday I was starting to think that if this is
how I was going to feel and not get any benefit from the infusions, why
bother. But then I get the great blood test results and with
yesterday's infusion I had no reaction! I started taking benedryl about
an hour before the infusion started and also increased my medrol the
night before and the morning of. Only my neck turned red this time. I
didn't have the nausea, itching and headache afterwards...not even
today!
I have a rheumy and a neuro and an infectious disease doc. Two of the 3
agree that I should have a dose of IV solumedrol with the infusion as
well as the benedryl. The ID does not. So I decided to boost the medrol
on my own. (I know I know...holding out hands for a rap on the
knuckles) But not having the horrible reaction yesterday and today is
sooooo worth it! I didn't take that much more. I'm definitely going to
talk with them all about it again. They would have given 80mg of IV
Solumedrol if I had gotten it that way and I didn't take anywhere near
that. I think I took about 20 mg extra if I'm remembering correctly. I
had taken benedryl the previous two infusions which did help with the
itching but not the rest. Much better today. Of course I keep having to
remind myself that the energy is from the medrol but here's hoping that
it lasts like in the first few treatments I had. Oh -- And the right
antibiotic is helping the UTI as well.
So -- There's my update!
Cyberhugs,
DianeW
It is only with the heart that one can see rightly; what is essential
is invisible to the eye. --Antoine de Saint Exupéry
Nann Bell - 17 Sep 2005 03:24 GMT
boy, i hope you found the solution to making the IVIG work for you. It must
be so discouraging to feel so lousy for so long after each infusion.

Signature
Nann
remove the Gator cheer to email me
Simply the thing I am shall make me live --- William Shakespeare
d'huit - 17 Sep 2005 17:58 GMT
OK! sounds like things are really beginning to come together for you. i'm
so glad, sweetie.
kate
I got the latest results on my IGG levels yesterday. It's been 6 months
since I started the IVIG treatments. At first I was getting it every 4
weeks but when the dr saw that my blood tests were not really showing
an increase in my IGG levels he suggested we switch to every 3 weeks.
The first blood test after we switched were greatly improved. My serum
level was normal! And 3 of the 4 sub-classes were normal as well!
Subclass 1 was still low but closer to normal than it was before! This
is all very exciting.
I wish I could say I was feeling as better as the test results show I
should. I haven't (knock on wood) had anymore sinus infections but have
been fighting UTI's for 2 months and anemia. Those two have had me
feeling really crappy to say the least. And very very fatigued. And I
had started having reactions to the IVIG treatments which lasted up to
5 days! Last month I had a 5 day reaction to the IVIG followed by 2
weeks of trying to get the right UTI treatment and by then it was time
for another IVIG -- so that's not a good program by any stretch of the
imagination. Until yesterday I was starting to think that if this is
how I was going to feel and not get any benefit from the infusions, why
bother. But then I get the great blood test results and with
yesterday's infusion I had no reaction! I started taking benedryl about
an hour before the infusion started and also increased my medrol the
night before and the morning of. Only my neck turned red this time. I
didn't have the nausea, itching and headache afterwards...not even
today!
I have a rheumy and a neuro and an infectious disease doc. Two of the 3
agree that I should have a dose of IV solumedrol with the infusion as
well as the benedryl. The ID does not. So I decided to boost the medrol
on my own. (I know I know...holding out hands for a rap on the
knuckles) But not having the horrible reaction yesterday and today is
sooooo worth it! I didn't take that much more. I'm definitely going to
talk with them all about it again. They would have given 80mg of IV
Solumedrol if I had gotten it that way and I didn't take anywhere near
that. I think I took about 20 mg extra if I'm remembering correctly. I
had taken benedryl the previous two infusions which did help with the
itching but not the rest. Much better today. Of course I keep having to
remind myself that the energy is from the medrol but here's hoping that
it lasts like in the first few treatments I had. Oh -- And the right
antibiotic is helping the UTI as well.
So -- There's my update!
Cyberhugs,
DianeW
It is only with the heart that one can see rightly; what is essential
is invisible to the eye. --Antoine de Saint Exupéry