Zanna and Sue from Mobile---IVIg

[Guest guest]

Hi Sue,

Thks for your description about treatment with IVIG and my treatment was:

1st treatment (May 2001) Immune Globulin Intranenous (Human) Venoglobulin-S

5% Solution 10 Grams in 200ml. bottles. I got 8 bottles a day/night (one

right behind the other) after that 1 hour pause and i continuos with more 8

bottles

(3 days)

Note- My height are 80Kg and the treatment was 2grammes per kilo

2st treatment (December 2001) Immune Globulin Intranenous (Human)

Venoglobulin-S 5% Solution 10 Grams in 200ml. bottles. I got 4 bottles a

day/night (one right behind the other) after that 1 hour pause and i

continuos with more 4 bottles

(2 days)

Note- My height are 80Kg and the treatment was 1grammes per kilo

Have a nice day!!!

Alvaro Nunes

----- Forwarded by Alvaro Nunes/NecPortugal/pt on 07-10-2002 17:37 -----

" SUE

GILLESPIE " To: <OurMyositis >

<wsuegil@... cc:

r.com> Subject: Zanna and Sue from

Mobile---IVIg

05-10-2002

22:27

Please

respond to

OurMyositis

Zanna, labs sounds good to me but actually I know very little about lab

reports.How do you learn to read and interpet the numbers. I feel so

uneducated about the lab reports and numbers so many of you speak of (dumb

is a more realistic word).I don't know what is normal and what is out of

range. About your IVIg infusion, I think you stated you may feel a little

improvement. I hope so, and I am looking forward to maybe getting some

improvement. My supplies and IVIg medicine was brought by courier service

from Infinity Infusion Center in Houston, Tx.. Your medicine must have been

given in a greater dose than mine as I recall you mentioning it was a very

large bottle. Mine was given as Immune Globulin Intranenous (Human)

Venoglobulin-S 5% Solution 10 Grams in 200ml. bottles. I got 2 bottles a

day (one right behind the other) every day for 5 days. This was given at

home under the supervision of RN's. They drew blood after the last bottle

every day.The last treatment was Monday of this week. Hope to hear the

results of blood work soon.However as I said I don't know what " the lingo "

is as far as numbers etc. When will you get your next infusions? Please let

me know how things go for you. I am hoping I will Qualify for another 5

days as I think it may give me some muscle strength. I took the

information about the doses I got off a box top of one of the boxes the

bottles came in. I also kept the information of " The product information

that was in one of the boxes.It also said this was Solvent Detergent

Treated(what ever that means, it sounds like something you wash dishes or

clothes in. Ha.)There was also some side effects and other scary stuff

listed but so far I did not have any of this that I know of. When the lab

reports from the blood draws are finished I may be whistling a different

tune but I have my fingers crossed. Keep me updated on your infusions as

this treatment is very important to me as I am sure it is to all of you

that find the IVIg may be beneficial to treating Myositis.Let me know when

you start feeling better.

Sue From Mobile---WHEW! what a close call we got on Hurricane Lili. I live

on the Texas (Southeast Side, bordering Louisana) and it was predicited to

make landfall with the eye of the storm right on the coast where we live.

It changed it's course and was downgraded to a catagory 2 hurricane just

before landfall. New Iberia, La got a lot of wind and water damage and

Lafayette, La. felt some pretty strong wind and rain damage. I have seen

hurricanes come and go during hurricane season for many years and this one

had me really concerned as it was predicted to be as bad if not worse than

Hurricane some time ago. We are just across the water from

Cameron,La. where so many lives were lost and the town leveled. We were

spared with just a few tail winds and rain. I am so thankful but feel so

bad for the people that it did affect. Now here I go again about IVIg

infusions.I think you stated that you felt some benefit from your IVIg

infusions after two weeks.I just hope I get some muscle strength from mine.

I am 77yrs. old and have had IBM since about age 52, but I did not know

it.I realized I was falling when stepping up or down a curb or step but

thought I had bad knees and put off seeing a doctor about it for several

years. I thought it would GO AWAY. Foolish woman.When I went to my doctor

about my osteoporosis I mentioned it to him and he had me see a local neuro

doc. Another bad experience. Was diagnosed with phrephial(sp.) neurothopy.

I continued to fall for two years, could not make a fist with my left hand

(I should have made one with hand and punched him out) so I got an

appointment with a Neuro doc that specializes in Neuro muscle diseases( a

professor at the University of Texas Medical School in Houston.) Took one

look at me put me through all the little neurological things they do in the

office and said he suspected a muscle disease. Well you know the

story(eemg. muscle biopsys) and dx me with PM. It is very difficult to tell

PM from IBM and most of the IBM patients are men. Another muscle biopsy

after 2 years of predisone and methotrexate and BINGO,there it was

(inclusions). Was sent to Methodist Hospital to see THE Neuro Specialist

for IBM. He confirmed it. End of story. That was about 5 or 6 years ago. I

went armed with all the information I got from so many that do research in

this group to my last appointment and the doctor was impressed with all the

knowledge I presented to him from all the research I got from this

group.After reading several pages of information and websites he agreed to

give me a chance with IVIg infusions. That was a fiasco as Medicare denied

payment and hospital care. My doctor was finally able to get my secondary

insurance to pay for it. It was given at home with RN " S that monitored it

carefully. I had 2 bottles a day (one right after the other) and it took

about 6 or 7 hrs. depending how fast or how slow the drip was. I think the

first 3days it was about 20 drips a minute. I was speeded up a little the

4th day and the 5th day I am thinking it was uo to about 30 drips a minute.

I tried counting the drips but it got boring so I lost count. Never the

less, I had no side effects. They drew blood every day whenthe infusions

were through and I have not heard from the lab so I don't know if I will

get more IVIg or not. You mentioned your Dr. may consider a maintence dose

every so often. When is your next treatment. Do you get them at home? Do

you continue to feel more muscle strength? You and Zanna are the only women

I have known to get these treatments. Good luck on your next treatment and

let me know how things go for you. Sue from Texas.