Re: Anyone know of someone on Coumadin and IVIG

[Guest guest]

Dear All,

I am hoping that someone out there might know of someone who is on

Coumadin and taking IVIG. Our cardiologist is unaware of anyone at our

hospital who is undergoing treatment for both and I am leary of being the

first. (Since coumadin seems to be affected by almost everything -- including

the foods we eat and since I have heard that IVIG can up the risk of stroke

somewhat. I would greatly appreciate it if anyone has any information on

this or knows of anyone who is taking both. Thanks so much.

Martha (mom to IgA deficiency, suspected antibody deficiency,

truncus arteriosus, pacemaker, endocarditis X2, 3 open heart surgeries. 2

pace maker surgeries, lots of upper respiratory infections etc.)

[Guest guest]

Hi,

Yes the immunologist would be prescribing the IVIG. However, there are not

many (to my knowledge people on long term coumadin who also get IVIG) I read

somewhere theat IVIG could possibly make you more at risk of stroke. I also

wonder whether changing the blood volume very quickly might increase

's risk of stroke because the level of coumadin in her body seems to

be affected by everything. Keeping the INR levels within the desired ranges

even when not on antibiotics or undergoing treatments is a challenge

(especially since she is growing. ( is already at higher risk of

stroke because of classic migraines and her mechanical valve).

--Martha

[Guest guest]

Martha - I've never heard of the stroke risk with IVIG. Do you have an

immunologist? Who is prescribing the IVIG? I

would check with them. Also call the IDF and ask them if they know of a similar

case.

Ursula Holleman

mom to (10 yrs old) and Macey (7 yr. old with CVID, asthma, sinus disease,

GERD, Diabetes Insipidus, colonic

inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation's 2003 National Conference

http://www.execinc.com/idf/

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

/

[Guest guest]

Dear All,

I am hoping that someone out there might know of someone who

is on

Coumadin and taking IVIG. Our cardiologist is unaware of anyone at

our

hospital who is undergoing treatment for both and I am leary of

being the

first. (Since coumadin seems to be affected by almost everything --

including

the foods we eat and since I have heard that IVIG can up the risk of

stroke

somewhat. I would greatly appreciate it if anyone has any

information on

this or knows of anyone who is taking both. Thanks so much.

Martha

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~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Hi Martha!

My 11 yr. old son, Blake is on Lovenox( a low molecular Heparin) and

receives IVIG every 2 weeks. Blake has a rare blood clotting

disorder. We were told that it is considered rare even in adults.

He is genetic. When he was 7 yrs. old he had a PICC line removed

after he " lost " a port due to infection. The problem was noticed

first when they placed the PICC line. It clotted off right away.

They used Urokinase to lossen up the clot. When they pulled the line

before we left the hospital, nothing was even thought of. When we

got home(2 hrs. later) Blake's arm, neck and face were very swollen

and blue. By the time he had a vascular study that night, he was

purple and having a hard tim breathing. They removed 1 gallon of

fluid off Blake. Well they just chalked it up to a bad experience.

2 yrs. later he was still having problems with PICC lines and he

finally lost a port to a " huge " clot. That is when the Dr. decided

to do a genetic study to see if Blake had a genetic reason for the

clotting. DUH? They were told that Mom has Antiphospholipid Syndrome

(this is an autoimmune disorder that leads up to clotting). Finally

someone is listening(Blake's Pulmo.)

Blake has several issues with this. He has Protien C & S Dificiency

and Genetic Prothrombin Defect and Thrombophilia. Sooooo, we were

referred to the Hem/Onc Dr. and he now takes care of the Lovenox and

makes sure his levels are checked every 2-3 months. Blake has been on

the Lovenox for 2-1/2 yrs. and he gets 15mg. SQ 2x daily. He has

been on IVIG every 2 weeks for 2 yrs. They tried to go to every 3

weeks this past June,and we did for 4 months. But Blake in keeping

with " his Protocol " got very sick and down. He had to have 4 ear

surgeries in 2 months and had bronchitis and a major sinus infection

in that 4 month period. When his levels were checked in Nov. Blakes

IGG level was 559(613-1750 are normal for his age). Needless to say

we are back to every 2 weeks until further notice.

The only thing we were told to not give Blake as far as the lovenox

was concerned is any green veggies that are high in vitamin K....ie

cabbage,lettuce, turnip greens and the such. All of his meds are

compatible with the Lovenox. Blake is allergic to a lot of antibitic

and any med with the red dye. Plus He can not digest foods high in

protein due to the Pancreatic Insufficiency. But Blake's Drs.

all " talk " to each other about his meds before they start him on any

new ones.

I do worry about the the stroke factor due to the Blood Clotting.

Righr now, he has no access in his brachial veins nor in the IJV due

to clotting. When they had to place a " line " a couple of weeks ago,

he wound up with a BROVIAC in his rt subclavian. They were going to

try to place a PICC line by doing a cut down, put wound up just

placing a permanent Broviac in his chest. So they had to increase his

Lovenox up to 17-1/2 mg 2 x daily SQ. I worry about him bleeding out

but the Dr.s are all taking care.

If you have a major concern about the use of Heparin and IVIG, I

would contact the IDF and find out the pros and cons. Blake's Immuno

already had done this for us before going to every 2 weeks. Plus

express to the Dr. your concerns about the Coumidin and IVIG. This is

the BEST place to star for answers.

(mom to Blake 11 yrs.{CVID,CAPD,Asperger's Syndrome, RARE Blood

Clotting Disorder},thinks he is 21)