Does anyone have more than one immune disorder?
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April 6, 2017 at 4:33 pm
I have CIDP, of course, and I also have hypogammaglobulinemia (an inability to produce enough protective antibodies; it’s an immune disorder, so I’m immune compromised even without the CIDP). I still have no idea how these two diseases interact. I know that IVIG, which I’m getting, is the best treatment for both and has to be continued for life. But there’s so much more I don’t know. My neurologist is expansive about some things and cryptic about others. Does anyone here have more than one immune disorder? Do you see more than one specialist, or does one neurologist handle everything?
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April 6, 2017 at 7:22 pm
Hello Sandra,
Welcome to the forum. You may be aware of the Immune Deficiency Foundation.
Their website is: http://primaryimmune.org
They offer a physician locator service at: http://primaryimmune.org/services/locate-a-physician/
However, do your own web search for Immunologist and you’ll likely get the same list the IDF will send you.
I too have CIDP and I believe that I developed a compromised immune system characterized by very low IGg levels after taking immunosuppressants.
However, I see an Immunologist for the immune condition, not a neurologist. Those are two distinct specializations. The only interaction between the two diseases that I just made up is that they are part and parcel of the same system but act through different agents.
A quote from the IDF: “Common Variable Immune Deficiency (CVID) is one of the most frequently diagnosed primary immunodeficiencies, especially in adults, characterized by low levels of serum immunoglobulins and antibodies, which causes an increased susceptibility to infection. While CVID is thought to be due to genetic defects, the exact cause of the disorder is unknown in the large majority of cases.”
Notice the generalization… ‘thought to be due to genetic defects…’ Maybe so, but mine did not manifest until the various CIDP treatments were in play.
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April 6, 2017 at 9:32 pm
Hi, JK,
ThNks for the response. What treatment do you receive for CIDP? What does the immunologist do for you?
I’m receiving high-dose IVIG infusions, and my understanding is that this is the proper treatment for both my conditions. I’ve never taken immunosuppressants. I’ll discuss all this with my neurologist at my next appointment. I want to know if I need another treatment that doesn’t overlap the CIDP treatment.
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April 7, 2017 at 1:31 pm
JK,
Primary Immune won’t give me any names of doctors in my area unless I fill out a form providing a lot of personal information. And they say a response could take 5 days. I think I should just ask my neurologist for a referral to an immunologist. I’m sure I’ll need a written referral anyway. Thanks for the link to that group’s site.
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April 7, 2017 at 2:54 pm
SandraP,
Prior to the end of last year I did not receive any treatment for anything. Then, after my hematologist referred me to the immunologist, I was started on IVIG. The dose is 30g once every 4 weeks. As you stated, expected to be forever.
What did the immunologist do? He convinced me to start the IVIG due to the (he said) high risk and great variety of things that can go wrong with a compromised immune system with Igg numbers as low as mine.
It’s for the best if you ask your doctors what you want to know and listen for what they explain.
In my own case, one immunologist said don’t take IVIG, wait until you get sick! No thanks, how can I predict when I’ll get sick so the infusion center will have the IVIG on hand? Worse yet, if someone is sick, the Infusion Center asks that you not come in. A poor recommendation in my judgement.
On the other, I would wish not to be on IVIG forever. So would everyone else on the Primary Immune website I’m sure. I did stumble on a forum over there and it seemed to me some unlucky patients were struck by and stuck with ever re-occuring bouts of shingles. One example of a possible out of control condition when the immune system does not respond effectively.
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April 7, 2017 at 6:00 pm
My neurologist put me on high-dose IVIG as soon as he confirmed that I have CIDP with severe nerve damage in both legs. His goal, and mine, is to stop the progress of the disease and save the function in my arms and hands. Neurologists treat autoimmune disorders with IVIG all the time and are experts in its use. The only adverse reaction I’ve had is a headache, fairly mild, after each infusion. The first series of infusions stopped the crippling stabs of nerve pain down my legs. Now I want to get some energy back.
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