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Old 03-11-2012, 02:53 PM   #1
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Cvid

Hello! I'm new to this, still figuring out how to use it...

I have a question: Anyone out there with CVID who have started to develop other additional autoimmune disorders? I now have rheumatoid arthritis and intermittent labs that suggest possible early signs of lupus. The RA meds have caused glaucoma and other eye problems, so now it's going to have to be decided what the next course of action will be. Because of the CVID, the injectable biologics seem out of the question since they act on the immune system. I'm so scared about all of this. I'm REALLY afraid of developing lymphoma...

Seems like I spend most of my time seeing doctors and I hardly ever feel good. I feel like I have nothing to contribute to conversations with friends and that I'm a somatic complainer. Nobody gets it. So to spare people I've slowly isolated myself and spend all my time with my 4 doggies and husband. I never know how I'm gonna feel so I stopped making plans with friends.

Who out there experiences this?

--NellieNunu

 
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Old 03-13-2012, 05:45 AM   #2
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Re: Cvid

Quote:
Originally Posted by NellieNunu View Post
Hello! I'm new to this, still figuring out how to use it...

I have a question: Anyone out there with CVID who have started to develop other additional autoimmune disorders? I now have rheumatoid arthritis and intermittent labs that suggest possible early signs of lupus. The RA meds have caused glaucoma and other eye problems, so now it's going to have to be decided what the next course of action will be. Because of the CVID, the injectable biologics seem out of the question since they act on the immune system. I'm so scared about all of this. I'm REALLY afraid of developing lymphoma...

Seems like I spend most of my time seeing doctors and I hardly ever feel good. I feel like I have nothing to contribute to conversations with friends and that I'm a somatic complainer. Nobody gets it. So to spare people I've slowly isolated myself and spend all my time with my 4 doggies and husband. I never know how I'm gonna feel so I stopped making plans with friends.

Who out there experiences this?

--NellieNunu
Hi Nellie,

I have CVID and have developed a rare and potentially deadly lung disease from it. I live a very normal life, work full time, single mom, own my own home. I too developed arthritis literally overnight. Autoimmune are VERY common in us with CVID. My rheumatologist will not give me arthritis meds as they lower the immune system, so I treat with pain meds. It works for me but we are all different, hence the VARIABLE in common variable immune disease. You are quite right that people do not get it, nor will they ever, unless they have it. I would HIGHLY recommend seeing a counselor as living with chronic illness can be very difficult. I would also suggest joining a support group for CVID.

Please keep in mind that with ANY test (such as lupus) that looks for the presence of antibodies, you could get a false positive because of your infusions - you have thousands of other people's antibodies in your system OR you could throw a false negative - because we tend to make little to no antibodies because of the CVID. Diagnosing us can be beyond difficult.

I wouldn't isolate yourself but continue your relationships as they are very important. Once you join a support group, you can discuss your medical issues with them. I rarely discuss my medical stuff with anyone as there is NO way they could understand, so why put that burden on them? It makes them uncomfortable as they don't know what to say to us. Good luck!

 
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Old 03-13-2012, 08:41 AM   #3
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Re: Cvid

Hi cvidmama,
Thanks for the response. You definitely have a much more positive attitude than I do! I think finding a support group is a good idea and will start looking into it.

I see my rheumatologist today and my husband, a physician, is coming too. Even though I'm an RN, when it comes to me, I have a hard time keeping things straight.

My RA also came on overnight. It was horrifying...it presented as severe carpal tunnel of both hands and I was in that condition 3 months until finally diagnosed. I've been pretty much in remission since treatment started, just have knee problems.

Thanks again for your suggestions and support. Take good care.

 
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Old 03-21-2012, 02:24 PM   #4
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Re: Cvid

I too have RA and CVID. I knew about the RA first and was treated for it with biologics. I asked my rheumatologist if I should stop taking the Enbrel and she said no. She said that the meds would help each other.
Interesting the different approaches out there.
Good luck. I'm new to this myself and am weeding through flu like side effects. I'm getting that there is no norm.

 
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Old 03-21-2012, 04:21 PM   #5
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Re: Cvid

Hi PMull3,

That's for sure! Makes all this so frustrating.

Are you getting IVIg for the CVID? I've been getting it for 12 years now, every 4 weeks. So far no med changes since the eye problems diagnosed. I guess all my docs have to pow-wow and make some decisions. My rheumatologist seems non-plussed at this point. I freak out whenever my symptoms change and whenever my labs get worse. They're all over the place, especially my WBCs and RBCs which get really low...my rheumatologist says these things are normal with CVID and RA.

Thanks for your note!

NellieNunu

 
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Old 03-22-2012, 12:12 PM   #6
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Re: Cvid

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Originally Posted by NellieNunu View Post
Hi PMull3,

That's for sure! Makes all this so frustrating.

Are you getting IVIg for the CVID? I've been getting it for 12 years now, every 4 weeks. So far no med changes since the eye problems diagnosed. I guess all my docs have to pow-wow and make some decisions. My rheumatologist seems non-plussed at this point. I freak out whenever my symptoms change and whenever my labs get worse. They're all over the place, especially my WBCs and RBCs which get really low...my rheumatologist says these things are normal with CVID and RA.

Thanks for your note!

NellieNunu
I just had my third IVIG session last Thursday. The irony is that since I started in January, I have had constant upper respiratory stuff, sinus pain going on. Haven't had that since I was a kid. Got me wondering about the side effects. The cure could be worse than the disease.

 
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Old 03-22-2012, 12:58 PM   #7
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Re: Cvid

You will still get upper respiratory stuff even though you're getting IVIg but it should be infrequent. Your dose will be titrated according to your response and infections. You've probably had undiagnosed CVID for a long time but were asymptomatic until now. I was diagnosed with hypogammaglobulinemia 5 years before I became symptomatic. It was an accidental finding while I was being worked up for a fever I was having for a year straight. They never found a cause but I'm convinced it was a prodromal sign of what was to come...

You mentioned your flu-like symptoms from the IVIg; I always feel ill with those symptoms during and for around 24 hrs. after an infusion. Yuck.

Do you work? I'm an RN and worked for about 7 years after starting infusions. Then I started getting sick a lot so my Dr. made me retire. I was being exposed a lot by sick co-workers and patients. It was a huge blow as I'd always imagined myself working and I loved it. The adjustment was hard but the bottom line was I had to accept this illness and my limitations or be sick all the time. Then the RA came and I didn't take that very well either. I find all this hard to deal with. How about you? I'm glad I found this site. Talking to others who have this helps me. It's impossible to get support from friends. They just can't understand what they can't see.

--NellieNunu

 
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Old 03-22-2012, 01:20 PM   #8
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Re: Cvid

Thanks for the reply. I get the sinus pain about 1 to 2 days after. But I have been upper respiratory sick for almost two months straight. That's totally new. The doc's think that I've had this my whole life but did a job compensating with other immune systems. It was a fluke find. I had chronic stomach ulcers for 2+ years. They kept testing for h pylori, insisting I was living on NSAIDS (because of the RA) - which I wasn't. The nurse made a mistake and ordered a general IgG level instead of the h pylori. There it was IgG 250. Everything else was normal. No consensus from the doc's as to what to do. They said that I wasn't sick enough. I hadn't gotten any viral stuff in years. But I still had the ulcers. If found an immunologist and he practically insisted that I had to start IVIG. Now I'm wondering if it wasn't a mistake. Maybe I messed up a good compensatory system.

This could all be coincidence. I'm a yoga teacher - the hot steamy room, bad viral winter in general...... hmmmm. Maybe I'm answering my own question.

When I was trying to get pregnant I kept miscarrying. I entered a trial program where I was infused with my husbands antibodies - theory being I was attacking the fetus as a foreign invader. Infusion didn't work. It all seems connected now. This is so much too wrap my head around. It's hard not to second guess yourself. You are right about this forum. Other people just don't understand.
What's odd is I know of 3 people local to me who have some sort of variable of this. I think that there are a lot of people walking around with this that don't know it.
Anyway -- thanks for the support. I appreciate it.

 
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Old 03-22-2012, 03:01 PM   #9
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Re: Cvid

In my opinion, and from what I understand, the compensatory theory doesn't make sense. At least not in this stage. Maybe when you were younger your body was trying to fight off infections with whatever it had but, as things progressed, ran out of options. Like when my body tried to rev up with fevers (a defense against infections). Who knows. I also get horrible, fulminating sinus infections a couple times a year. My whole face hurts and my teeth throb.

I agree; this CVID is definitely under diagnosed. They don't test for it because the treatment is so expensive. They'd rather constantly give antibiotics.

I, too, so appreciate your support. Feels good to be able to talk about all these things. They're always so bottled up.

 
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