Tuesday I had my second IVIG infusion. It was a bit more difficult this time
because I no longer have the pic line. The nurses were the BEST IV stickers
I've ever had! Oh-my-gosh! I couldn't even feel the needle go in which is
the part I usually dread. Of course you may say this was just a lucky stick
but I was stuck 3 times in all and no pain, well not with the sticks at
least. The first vein blew after about an hour and the medicine started
going into my arm. It was strange because I felt something strange while I
was sitting there. It felt like I was getting a needle stick. Silly me - I
should have known. That was when it happened. Anyway, I started getting sick
to my stomach and thought maybe I should go to the bathroom and that's when
the nurse noticed the infiltrate. So once they got that all fixed and such,
the nausea went away. The only other thing that happened was my neck and
throat were flushing and the nurses just kept an eye on that. No itching or
throat swelling. Just the redness from just below my collarbone up my neck.
So all and all I think it went well. Took a bit longer this time - 6 hours.
In the car on the way home the nausea returned and hubby wanted to go to
Home Depot. So that wasn't fun with the nausea and I felt really wiped out..
But we stopped at Starbucks after Home Depot for a triple Venti Toffee Nut
Non-Fat Latte and that did the trick. Energy increased Nausea went away.
When I woke up yesterday morning I felt like I'd been run over by a bus.
Didn't expect that one! Eyes felt swollen in my skull and I have to say I
really felt like I had a hangover. Joints were very achy but then since
Tuesday was my Enbrel shot day I had skipped it because of the infusion and
I didn't know what to do about that. So I got up and took my shot. Had some
nice strong coffee with breakfast and ==== here's the good part ===== within
a half an hour! 30 minutes! I felt --- dare I say it---- I'm going to
whisper--- normal. Again. Just like last month.
Ok so I'm having the wonderful energy burst. Feeling great and clear headed.
Multi-tasking. Oh what a joy that is! I've been getting the house ready for
some painting and such for the past two weeks with the help of Nick and a
few of his friends. Cleaned out the extra bedroom of all the junk I had
stored in there and the game closet that hasn't been touched in 5 years. We
cleaned out the entire 3 car garage. I rented a storage unit and put my
Mom's stuff in there. I'm having the crown molding put up tomorrow and then
the painters come after that so the house is fairly pulled apart. As long as
I had to mess everything up why not do it right and have a garage sale
before it gets too hot? So for the past two days I've been pulling junk out
and pricing it. So the next two days are garage sale sitting. I couldn't
have even imagined doing this a few months ago. I still have pain in my
feet and back but the rest of me is doing pretty good.
So I'm liking this IVIG stuff. My rheumy sat and talked with me for 45
minutes on Monday's appt. She said she's "cautiously optimistic" that this
will help. I told her even if it only lasts a few days after the infusion
each month, I'll take it. It is just so wonderful to feel normal again.
So that's my update. Thanks for listening! I'll check back in soon!

Signature
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
Harvey R. Stone - 13 May 2005 13:14 GMT
> Tuesday I had my second IVIG infusion. It was a bit more difficult this
> time
[quoted text clipped - 64 lines]
>
> So that's my update. Thanks for listening! I'll check back in soon!
Thanks for the update and normal is wonderful. We do not forget what that
feels like. IVIG,,,,,, new to me. Is it a anti-tnf or something like
Duckie is taking?
Harv
DianeW - 13 May 2005 18:06 GMT
IVIG - It's Intravenous Immunogobulin - Like gamma gobulin of the old
days only in the vein instead of the butt. I'm sure I totally messed up
on the spelling. It's to make my IGG levels come back up to normal
hopefully. It's a blood product for my IGG being low, a condition
called Common Variable Immunodeficiency You can read about it here if
you are so inclined.
http://www.primaryimmune.org/pubs/book_pats/e_ch03.pdf
They finally found something wrong with me that can be fixed! LOL
Once a month I get an infusion of the IVIG which takes about 5-6 hours
and as you read above, mild inconvenience all in all considered. And
so far the benefits are way too good! Hoping it lasts! DianeW
. DianeW
Harvey R. Stone - 13 May 2005 23:04 GMT
> Once a month I get an infusion of the IVIG which takes about 5-6 hours
> and as you read above, mild inconvenience all in all considered. And
> so far the benefits are way too good! Hoping it lasts! DianeW
>
> . DianeW
Hi Diane,,,, I hope the benefits far outway the cost. Are you being tested
regularly to see how you kidneys are doing?
Harv
DianeW - 14 May 2005 03:18 GMT
Yes everytime I go in they draw blood - two tubes. Complete blood
count, bmp, sed rate, and igg levels as well as some others I don't
remember. This doc is very detail oriented. Thanks for thinking of
that! DianeW
Harvey R. Stone - 14 May 2005 14:40 GMT
> Yes everytime I go in they draw blood - two tubes. Complete blood
> count, bmp, sed rate, and igg levels as well as some others I don't
> remember. This doc is very detail oriented. Thanks for thinking of
> that! DianeW
and a urine sample?
Harv
Harvey R. Stone - 14 May 2005 17:41 GMT
>> Yes everytime I go in they draw blood - two tubes. Complete blood
>> count, bmp, sed rate, and igg levels as well as some others I don't
[quoted text clipped - 3 lines]
> and a urine sample?
> Harv
Ps If that is one of the things you have said, like Roseanna Dana,,,, never
mind....
Diane - 15 May 2005 14:04 GMT
diane, this is so cool. can you tell me how the CVI relates to your RA
and MS? (my, you're a mass of acronyms, aren't you?)
diane
DiWitt - 17 May 2005 16:27 GMT
Sometimes I can't even remember what all those letters stand for! Part of
CVI is that your body doesn't make antibodies but does make auto-antibodies.
It's just a matter of what they are directed towards. It's yet to be seen if
it will calm down the RA and MS. The research has been minimal with IVIG for
either disease and with mixed results. But the number of participants in the
studies have been so small they studies themselves are considered
"statistically insignificant"
I'm at a week after the second infusion and I'm still having great energy
but I'm a bit concerned about some MS symptoms I'm having. Of course, I've
been overdoing it like crazy. It's so hard to sit and rest with all this
energy. I had the garage sale and made almost $600 and cleared a space big
enough to park my van inside for the first time! I had the living room and
dining room painted as well as the guest bedroom; Also had the remainder of
the crown molding put up, plus the electrician was out for installation of
two paddle fans and a lite fixture. All this stuff has been on hold for two
years! That's the amazing thing about feeling "normal" I'm able to
multi-task in my brain again. I can make a plan and carry it out instead of
sitting around thinking about what I'd like to do. I'm not physically doing
this work but it still takes being awake and I am finding myself on my feet
a lot more. Sunday I actually left the house to go shopping at 4:30 pm --
typically my nap time. So ..... I'm hurting a lot more than I would if I
would just sit down a bit more. Today I'm resting. All day. Then tomorrow
is the big push. Family is arriving on Sunday and next Wednesday is Nick's
graduation and party. And..... I hired a caterer this time. Not going to try
to do the cooking myself. Maybe a few things.

Signature
Cyber,
DianeW
It is only with the heart that one can see rightly; what is essential
is invisible to the eye. --Antoine de Saint Exupéry
diane, this is so cool. can you tell me how the CVI relates to your RA
and MS? (my, you're a mass of acronyms, aren't you?)
diane
Kelly Cobb - 13 May 2005 15:03 GMT
I'm sorry you have to go through all the nausea and discomfort to get to the
good part! I am so glad there's a good part, though.:o)
Enjoy your energy burst, but don't overdo it,
Kelly C.
> Tuesday I had my second IVIG infusion. It was a bit more difficult this time
> because I no longer have the pic line. The nurses were the BEST IV stickers
[quoted text clipped - 44 lines]
>
> So that's my update. Thanks for listening! I'll check back in soon!
Sunny52 - 13 May 2005 15:08 GMT
Feeling normal again is great news, Diane. I must agree with Kelly,
don't overdo.
Hope it continues to be smooth sailing ahead!
Bonnie
RhondaM - 13 May 2005 16:47 GMT
That is wonderful!!!!!!! I am so happy for you.
Doncha hate it when that happens... veins are so picky.
Why did you have the pic line removed? I thought you could keep those for a
few months as long as they are flushed out every so often. At least it
turned out good!!!!!! I love those nurses that can get a IV or blood the
first time they are truly special to me.
anyways I am glad to hear you are doing so well.
RhondaM
> Tuesday I had my second IVIG infusion. It was a bit more difficult this
> time
[quoted text clipped - 64 lines]
>
> So that's my update. Thanks for listening! I'll check back in soon!
DianeW - 14 May 2005 03:20 GMT
They removed the pic line because I was finished with the IV abx and
the ID feels that keeping it in for a once a month use was too risky
and just inviting infection. I'm glad it's out. It was in a very
inconvenient place on my upper arm and it caused chaffing with the side
of my bra! DianeW
RhondaM - 15 May 2005 06:28 GMT
You know I think I am confusing a pic line with a port.
They were wanting me to get one(a port). Oh yeah I dont blame you for
wanting that out. that sounds irritating.
I am still happy for you though I hope you are still feeling good!!!!
> They removed the pic line because I was finished with the IV abx and
> the ID feels that keeping it in for a once a month use was too risky
> and just inviting infection. I'm glad it's out. It was in a very
> inconvenient place on my upper arm and it caused chaffing with the side
> of my bra! DianeW
Duckie - 14 May 2005 00:12 GMT
I am so happy for you. Enjoy your happy buzz.
Duckie
> Tuesday I had my second IVIG infusion. It was a bit more difficult this time
> because I no longer have the pic line. The nurses were the BEST IV stickers
[quoted text clipped - 44 lines]
>
> So that's my update. Thanks for listening! I'll check back in soon!

Signature
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(_<_)
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__('< *QUACK!*
<_{__)
_('< "|,,|_"
(_<_)
_('< "AFLAC!"
(_<_)
Gwen Love - 14 May 2005 00:24 GMT
Congratulations on the feeling normal, Diane. Just hope it lasts a long,
long time.
Gwen
> Tuesday I had my second IVIG infusion. It was a bit more difficult this time
> because I no longer have the pic line. The nurses were the BEST IV stickers
[quoted text clipped - 44 lines]
>
> So that's my update. Thanks for listening! I'll check back in soon!
d'huit - 14 May 2005 00:35 GMT
((((((((((((((((((((((dianew))))))))))))))))) hey, i cheering on longterm
"normal" for you!
kate
> Tuesday I had my second IVIG infusion. It was a bit more difficult this
> time
[quoted text clipped - 64 lines]
>
> So that's my update. Thanks for listening! I'll check back in soon!
Nann Bell - 15 May 2005 05:17 GMT
Please, please, please, let it last longer each and every time! I have my
fingers crossed for you! At the very least, may it get rid of all the
infections you've been having, but I am truly hoping for so much more.

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Nann
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