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Discussion Starter · #1 ·
I have determined to post about this today. I've been living with this knowledge for several weeks, even told some of my family, but somehow it is harder to say it here. Maybe because you understand the mixed feelings that come with diagnoses after years of illness. My dx of Lupus was pretty much confimed at my first Rheumy appt. in April, but he wanted to do more tests. Then at my 2nd appt (May 25) , I found out not only do I have Lupus, but also a Primary Immune Deficiency(Hyppogammaglobulinemia or CVID) and that I need IV infusions of IG (immunoglobulins). Since I have suffered with constant severe respiratory infections for years, my first response was "when can I start the treatment?" Not so easy of course - first I have to see an Immunologist (appt is June 28th), then more tests, etc. So I don't know how long it will be till I can get the IVIG which will probably needed for the rest of my life. Meanwhile I've had two sinus infections this month, am on double strength antibiotics and now I've got another infection in the works (started having a bad fever yesterday). I know it seems strange to be both immune deficient and autoimmune, but apparently, people with CVID are more likely to develop autoimmune problems. And it is so frustrating to know there is help for me and not to be able to get it or know when I'll be able to. But at least my Lupus is being treated and now I have hope.
Thanks for listening,
Sharon
 

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Wow, I can understand why you WOULD be having a hard time -- what a double-whammy you've been given. I'm sure glad your rheumatologist followed up and found the CVID, and I'm relieved for you that you've got the appointments in place to begin the process of getting it treated, too. I'll certainly be keeping you in my thoughts and I hope to hear how you're doing.

Renee
 

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Sorry you're having such a rough time right now. I'm glad you found this place as iti is very suppotive and knowledgable bunch.

Good luck.
 

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Hi Sharon and nice to meet you.

I am sorry that you are not getting treatment fast enought but try to look at it this way, they are doing all the right testing for you and making sure what to do. It is very good that you are going to that doctor. You certaintly want everything to be looked at before the treatment starts. Just a little more time to go and you will start to feel better. Keep telling youreself that.

You are right, we do understand each others feelings so let it all out here and don't be afraid too.

Nice to meet you and hope that your testing and fast and your treatment can begin.
 

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Discussion Starter · #6 ·
Thank you all for the hugs & encouragement. I see the Immunologist next Wed. - less than a week to wait now. Saw my primary Dr yesterday & got a Rocephin IM shot to help with my current respiratory infection. She's almost as anxious as I am to get me started on the IVIG treatment. Told me to have the immunologist call her & she'd fill him in on my long history of recurrant infections,multiple hospital stays, many courses of IV antibiotics etc. I'll let you know how it goes.

Sharon
 

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Sharon,

Did the rheumatologist start you on any medications for your lupus? I think he is a wise man to send you to an immunologist for treatment of your CVID. That shows he doesn't think he can do it all. I am sure the wait must be agonizing at this point since you know what will help the CVID. The IVIG will also help your lupus to some extent.

Let us know how your appointment goes.

Take care,
Karen
 

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There is Hope!

Hi, sorry to hear about your heath issues but just wanted to let you know that there are several things you can do to try to shore up your immune system. The first thing is making sure that all relevant diagnoses have been made.

I myself have hypogammaglobulinemia and suffer from autoimmune (and other related) conditions (as well as having had an associated cancer). I suffered from terrible sinusitis and infections for years until it was discovered that I had developed food allergies. It turned out that many of the symptoms, initially, acted as though I had inhalant allergies (i.e, they resulted in lung and sinus issues). It was only when the allergies worsened (and I began having anaphylactic reactions) that the allergies were discovered. Once I omitted the offending foods from my diet, guess what . . . my sinus problems almost disappeared! So, while you will always be prone than others to developing to sinusitis and ensuing infections, if you figure out what is triggering it, you may be able to alleviate the problem greatly.

Additionally, have your doctor run certain tests to make sure that you are not deficient in anything that helps shore up and regulate the immune system, such as Vitamin D. See, e.g., Vitamin D status, 1,25-dihydroxyvitamin D3, and the immune system, Am J Clin Nutr. 2004 Dec;80(6 Suppl):1717S-20S. I was tested about a year ago and was very, very deficient and supplementation has helped immensely.

Also check to make sure that you do not have any of the related problems (such as Celiac Disease) that can cause malabsorption. One issue with testing is that if you are missing the very immunoglobulin on which a test relies, you will necessarily have a false-negative result on the test. Make sure your doctor is aware of that (very common problem with blood tests for, e.g., is one of the blood tests to check for gluten intolerance measures the IgA response - if you are deficient in IgA that test result will not be reliable).

Finally, a healthy diet, exercise and vitamin supplementation can help greatly. In the end, changes to my diet and proper diagnoses have left me in a situation where I get sick less often than most "normal" people. So, there is hope!

Best of luck!!!!
 

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Hi Mary Pat and welcome :)

This is a really old thread so you are very unlikely to get a reply from the original poster.

It would be good if you started a thread of your own in the "introduce yourself" forum so that we can get to know you.

I'm going to close this thread because it is so old.

Bye for now :wavey:

Katharine
 
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