When does Idiopathic = Autoimmune

September 30, 2007 at 9:18 am 2 comments

From a recent comment:

“I was diagnosed with ITP – Ideopathic Thrombocytopenia Purpura in December 2005 and then CVID in October 2006. I’ve been on IVIG for 12 months (started out 5 days per month – now it is down to 3). My trouble is the ITP which causes the platelets to destroy themselves – and in between IVIG I must still take steroids. My hope is to get rid of the ITP and of course if I didn’t have CVID they would have removed my spleen.”

It seems that a number of conditions that are labeled “idiopathic” are actually thought to be related to autoimmunity. It seems likely that the guest above has antibodies to her platelets. The antibodies wrongly destroy the platelets and thus make it difficult for her body to stop bleeding. My immunologist is reluctant to make a diagnosis of autoimmune urticarial (hives). This is frustrating because I have be getting them every day now for over a year. I get the sense that a diagnosis of autoimmunity is considered by her to be a diagnosis of exclusion. And there does seem to be a test to determine if I have an autoimmune response. I’m not sure why all the reticence to declare a condition autoimmune. Perhaps the tests are of questionable validity, perhaps the options for treatments are relatively ineffective or maybe doctors want to look at every other possible option first.

The question is how many of us who are diagnosed with idiopathic conditions actually have wonky immune systems.


Entry filed under: autoimmune disease, Common Variable Immunodeficiency(CVID), cvid, disease, Health, immune system, immunodeficiency, IVIG, medicine, Primary Immunodeficiency, Uncategorized.

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2 Comments Add your own

  • 1. wrekehavoc  |  February 13, 2008 at 7:00 am

    nice to see you’re still out there 🙂 i have been on IVIG every 4 weeks for almost a year, and i can tell you that it has nearly changed my life — for the better. i have two young children, and while they have brought all sorts of nasty bugs into the house, i have caught fewer of them (i have caught some, but not nearly as much as i have caught in the past.) part of that is probably also due to the fact that i wash my hands like howard hughes 😉

    but seriously, my whole situation started with ITP, and my brother, who also has CVID, started out with ITP. the IVIG keeps that situation in perfect check. but when you have CVID, you are often also the happy recipient of a variety of autoimmune joys, ITP being one of the most common, i’ve come to find. so yes, you have to wonder how many of us are walking around with weird immune systems. a certain portion of the population is IgA deficient; but generally, if that’s the only deficiency, no treatment is undertaken. its when you have other deficiencies, like IgG and/or IgM that the fun begins.

    i’m reading an interesting book called “the autoimmune epidemic” by nakazawa. you might find it an interesting read.

    stay well!

  • 2. aquavelvet  |  February 28, 2008 at 10:59 am


    Felt moved to write to you, when I read about you having ITP…It is not an easy thing to go through and so I wanted to give you some support! I was also diagnosed with ITP in December 2000, and I was given prednisone for about 6 months, until my platelets came back. I fully recovered. The doctors informed me of the possibility of having to remove my spleen but I was very reticent. They were considering it only as a last resort, if the prednisone did not work. I was diagnose with CVID only years later, in December 2004. I started my IVIG only in the summer 2005. It has steadily improved my quality of life. Just about a month ago, I started on Vivaglobulin which I found very difficult to prick myself subcutaneously for the first few weeks. A month later I am much better at it, visualization, meditation, healthy eating, stress management and exercise all work together to support my IG infusions. I still suffer from migraines and fatigue, but overall it’s worth it. It works better for me then the megadose of monthly IV/IG, which knocks me out for a week, and only lasts for 3 weeks. Also, taking charge of my treatment and reducing trips to the hospital is also a bonus. For those who can, I recommend seeing a health psychologist, I started in October of last year and it is extremely helpful in learning how to cope with all of this, past, present and future.

    Take the time to take care of yourself:)


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