My son has just had his first treatment of IVIG. He is 1 yr old and the treatment was administered 3 days ago.

He has been diagnosed with XLA. He is obviously struggling with an infection at the moment as his lymphnode on the back of his neck is very swollen and red (purple!). He is receiving oral flucox for this infection. Last week he was receiving IV anitbiotics for the infection.

Last night when he came in to us (his neck was hurting), we noticed he has a rash across his body. The rash appears as small pin-prick marks.

Could this rash be as a result of the IVIG or is it likely to be a reaction to the flucox? He has had flucox before when he had an infection but I cannot recall this effect.

On a side note, we have noticed with flucox that his tongue goes black! It looks like he has been eating black-jack sweets.

Many thanks

steve

Shelbie gets IVIG every four weeks. She is also immune deficient. She gets pre-meds to prevent reaction to gamma. She gets a strong does of motrin and phenagran [sp?]. Her reaction is bad....migraine headache, can't see, nausea, can't walk. She takes the pre-meds every time and has no reaction. She has had the surgery for gurd and you are not supposed to throw up, it may "pop" the surgery. Her pre-meds prevent the throwing up. She is 13 and has been getting gamma since she was 6. She knows she needs this as she hasn't any immunity to anything. With the pre-meds she has no qualms about the infusion. Even gets them on weekends now, no missing school.

I was diagnosed with CVID earlier this year and began researching Vivaglobin as soon as it was advised by my Immunologist. I also happen to have RA so I take Methotrexate and have infusions of Remicaid every 6 weeks, so the prospect of yet another infusion was a little unnerving. After lots of research, questioning and soul searching I decided to go forward with the treatment. I still didn't feel comfortable with it, but agreed to it. I began in May. The purpose of this is not to frighten anyone, but to let everyone know what my particular experience was.

I had many of the common reactions, but the visiting nurse did say that mine seemed a little more severe than anything he had seen before. By June 1st I was beginning to get bad enough headaches to go to the ER. Initially I was diagnosed with migraine headaches and given pain medication. On June 25th, I was admitted to the hospital and a spinal tap was done. I was diagnosed with Viral meningitis. They immediately began an antibiotic via IV (which is effective in only one of approx. 70 strains of viral meningitis). I began to spiral - to make a long story short, my kidneys were now failing.

After a long hospital stay and string of doctors, the over-all opinion was that the Vivaglobin caused the meningitis and several of the doctors (including the Infectious Disease, Pain & Drug specialist & "Hospitalist") all agreed & all said they had seen this before. The renal failure was the reaction from the antibiotic (Acyclovir) given.

At present, I am out of the hospital slowly recovering (my kidneys are functioning at 40% but slowly improving) and I am told the meningitis will continue to improve. I have been told not to continue the Subq IV, Remicaid or Methotrexate for now. The Infectious Diseases doc tells me there are other ways to combat CVID and when I have recovered from everything, we will begin to tackle it.

I hope this helps someone. If nothing else, if your "gut" tells you to keep looking, then keep looking! If you have several complications involved, do your research, be your own advocate and have someone close to be your advocate in case you aren't able to. That's what saved my life!

I'm glad you are on the mend.

You say the over-all opinion of your doctors was that the Vivaglobin caused the meningitis.

What do they base their opinion on? Did they report their finding to the FDA? Did they report their conclusion to CSL, the drug manufacturer?

Are there any other cases of viral meningitis associated with the specific batch of Viva you received? I would think that if it was contaminated more than one person would contract the disease from batch.

I've never heard of virus transmission through IViG or subq gamma.

I've toured IViG plants. The numerious viral removal steps and tests, from collect to manufacture, every batch goes through makes it very difficult for me to accept that you contracted he illness through the Viva.

Please keep us posted on your progress and the investigation of your "contaminated batch."