In search of IVIG doctors

My wife is IgG deficient; she did IVIG for one year, and now does it SubQ every 7 days at home. Our son is immune deficient; take the pneumoccol vaccine often (at age 22 he had great response), but it wore off, so he took it again at age 25. He was also diagnosed with ulcerative colitis (after a bout with salmonella poisoning in June 2013). Doctors are now recommending Humira.

We want to know the names of doctors who use IVIG to treat ulcerative colitis.
HELP!!!

He is immune deficient. The pnuemoccol vaccine keeps wearing off. He was diagnosed with that at the age of 6 years old. His brothers took the vaccine and it worked for them. His mother is IgG deficient and uses gamma globulin. He just had bloodwork yesterday; it should be back in 3 weeks, to check his levels. He is immune deficient and now has ulcerative colitis.

His mother's doctor is researching; he has never heard of using IVIG for ulcerative colitis.
Please give the name of doctors we could have him reach out to or that we could go see.
Humira is too risky for him; he is already immune deficient. He has sinus, ear, and bronchitis; with Humira, he would probably have penumonia.

I seriously doubt you are going to find any GI's anywhere who will prescribe ivig for ulcerative colitis since it is not approved to treat it. The only ones I know of here who have received it were prescribed it for another condition other than UC. Same probably holds true tor insurance companies. They aren't going to cover an unapproved med for UC. Your best bet is to find a doctor who will prescribe it for your son's other conditions.

What is it?

His immunologist is researching the use of IVIG for immune deficiency patients who develop UC. He just had bloodwork day before yesterday to check his levels for the immune deficiency. The gastro doctor refuses to talk with the immunologist about the immune deficiency. There is a warning on Humira about lowering immune system, i.e. infections...he already gets infections (sinus, ear, bronchitis...hasn't had pneumonia in a while, because he goes right to the doctor when sick and has kept getting pneumo vaccine repeatedly). Humira will lower his already low immune system. His mother uses IVIG. There is a case where IVIG put UC in remission...by accident...because a 33 year old man was being treated for immune deficiency with IVIG and his UC went into remission...almost immediately. There are other studies, as well.

UCSF at Mt. Zion has done this, but they are all the way across the country in San Francisco, CA. We are on the East Coast.

IVIG is human gamma globulin given IV to replace the gamma globulin you do not have. The first year, it was IV every 3 weeks. Now, she does SubQ at home every 7 days. It is wonderful! My wife is well and can live again; she is rarely sick now.

IN SEARCH OF DOCTORS who can confer with immunologist who use IVIG and have discovered UC going into remission because of its use.

He does know a GI doctor that he can refer us to. However, this new GI doctor has never treated anyone that has both immune deficiency and UC.

We are IN SEARCH OF A DOCTOR who has treated someone who has both.
Our immunologist wants to talk with someone who has a patient like my son!
HELP!!!

I appreciate you offer of New York. I would like to find someone with UC who does IVIG. I would like to put our doctor in touch with their doctor.

Our immunologist is in Atlanta. We have seen him for 20 years. He has never had a patient with immune deficiency and UC. He is going to research it. My wife is an IVIG patient, but she does not have UC and we do not have a family history of UC.

I will try that. Thank you for your kindness. I hope you are doing well. By the way, my wife's name is Mary Ann.

Fatherof3boys,

My daughter's name is Hailey. You can read about our journey with Ulcerative colitis and selective IgM deficiency and IVIG use under Haileysletter.

I found an Immunologist for her; he does treatment of IVIG infusions on patient that have ulcerative colitis.
Here is his information :

http://www.allergycleveland.com/hostoffer.php

He has seen improvement with UC with high dose IVIG infusions. Everyone responds differently. Such as my daughters case. She is selective IgM deficient, therefore the IVIG infusions did not improve her colitis, since it will not replace Igm , only IgG antibodies. In your son case I would definitely try the IVIG fusions, he may respond wonderfully.

Good luck to you, and hopefully your doctor is willing to try the infusions for your son, it would benefit him due to his deficiency.

Your welcome! Good luck to you and your family. I understand ,
My daughter does not respond to the pneumonia vaccine also.
She is doing well though. I am a firm believer if faced with UC, it is a benefit to find a immunologist to help with this disease.

70 percent of our immune system is in our colon.

Email me anytime.

You'll find more information if you search for IvIG for Crohns. They are the ones that usually get the "experimental/new" medications first.

I remember reading about it on Jpouch.org. Let me see if I can find a link to it.

Have you looked into a hyperbaric chamber? I heard a story about it @ /beta.prx.org/stories/129561

ks1905 AND Haileysletter:

Thank you so much! I am sending all of this to my immunologist. He is very progressive, and said he would research it.

He has given us Valtrex for mono before.

I strongly believe that my wife would have developed other illness if she had not been doing IVIG.
Now that my son had 2 conditions, I feel the the IVIG is the difference between her and him.

Thank you for the information! Good luck to you in your journeys...