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Diagnosed with CVID (Common Variable Immune Deficiency) 18 months ago. Treated with gamma globulin intramuscular infusions to which I was allergic and which caused a week's long hospitalization due to Serum Sickness (basically, my blood was poisoned by the infusions). I am still not well (major fatigue, frequent infections, etc.) and don't know from whom to seek help. The only doctor in my locale (Santa Barbara, California) who treats CVID is the one who ordered the infusions but didn't bother to monitor what was happening to my blood, so I can not trust him.
There's a concurrent problem that may be related to CVID: very copious anal mucous discharge for which neither GI specialist I've seen has offered a solution or satisfactory explanation.
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Great information. Thank you for taking the time to offer your many excellent suggestions. I may join Facebook in order to check out these groups.
October 29, 2011 - 9:00pmThis Comment
Please consider driving to UCLA to see Dr. Marc Reidl. He is a clinical
October 27, 2011 - 7:20pmImmunologist. Also check out www.primaryimmune.org and www.immunedisease.com both explain primary immue deficiency in depth. Hypogam is often called CVID - so you may want to search that term as well. Immune Globulin is given in 2 routes these days - IV and SubQ (sometimes written SCIG) - almost no one gives it IM these days. You really need to hook up with a true clinical immunologist at a teaching hospital like UCLA or Stanford. Best of luck to you.
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Thank you for your advice. I did use the wrong term as the infusions were actually Hizentra SubQ. Will definitely study at the links you provided. Do you have first hand experience with Dr. Reidl or a physician at Stanford? Can you confidently recommend any physician as an eminent expert for cases like mine (CVID with inability to tolerate Hizentra and most likely any other type of GG infusions)?
October 28, 2011 - 7:59amThis Comment
What makes you think you won't tolerate any infusions because you did not tolerate Hizentra? People are very unique - and often when one brand doesn't work - another one will. My son had aspeptic meningitis from one brand, but has not had a single reaction on another brand (for 5+years). I've heard Reidl speak - but have not seen him personally, but I know others who have and they all LOVE him. There is a doc in Ohio who deals a lot with patients with issues dealing with GG infusions (in particular patients who can't tolerate any brands) - I'd be willing to bet IDF could put you in contact. I know a patient who saw him and he's done wonders for her. At Stanford - I'd know Dr. McGhee is up there - and treats children and adults. I really like him. As for experts in CVID - I'd say Cunningham - Rundles - but she is in NY and I'm not sure how necessary that is as a first step. The IDF can also connect you with doctors - and can tell you about upcoming educational events (there is one in December in CA).
Please don't feel like you are at the end of your rope because you can't tolerate one brand - often another brand will work for you. There are 3 brands FDA approved for SubQ - what wasn't work for one will often work for another. Are you on Facebook? There are MANY groups for CVID/PIDD patients.
October 28, 2011 - 8:02pmThis Comment
Hi Anon,
Welcome to EmpowHER and thanks for your question. I am sure you desperate to find a treatment to this. There are many ways to treat CVID; Immunoglobulin therapy: This treatment involves boosting your immune system through regular injections of antibodies from donor blood plasma.
Infection management; This is a course of antibiotic medication form time to time to prevent and treat recurring infections.
And sometime other forms of medications are prescribe to relieve the symptoms such as pain, fever and congestion.
It's best to see another doctor and get a second opinion as too your choices in treating this.
Best of luck,
October 27, 2011 - 1:56pmDaisy
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Thank you, Daisy. I didn't know that specific antibodies could be injected instead of gamma globulin. I'll look into it. --et
October 27, 2011 - 4:27pmThis Comment