CVID

Had my immunoglobulins tested last week and got the results today. IgG and IgA were low last year and are even lower this so the haematologist is referring me to an immunologist. Apparently CVID and ITP often go together but I haven't seen much talk of it here. Now have to wait to see if treatment is warranted. Apparently treatment could be done myself at home which is good but it's a two hour or so infusion every week which sounds a bit daunting.

On a more positive note, my self medicated low vitamin D was a huge success. It's gone from 20 to 140 in a few months with 5,000 IUs a day.

Well, that stinks, Ann. I've really seen more children diagnosed with CVID than adults, but maybe only because they don't test adults much.

Good news on the D - it took me 14 months on high dose (50,000 IU's a week) to get to 60.

Well having cogitated a bit and researched lots I'm actually feeling quite excited that I've maybe found the answer to several problems. Lots of CVID people online talk of painful joints so maybe my painful ankles which are getting worse and worse are caused by this. If treatment would help with that I'd gladly do it as often as necessary. So too my tiredess even when counts are fairly high, constant ear and sinus problems and other odd things that seem to happen. Maybe it's all connected and can be helped.

Maybe I should get tested too. I've been sick a lot lately and chalking it up to Methotrexate. Good luck, Ann!

Hi

I also recently received a tentative CVID diagnosis. My IGG levels (IGA, IGM, and IGG) were all super low for a few months. I say tentative, because it is my understanding that you can't receive a complete diagnosis until you have had two antibody titer tests -- which essentially tests to see if you have antibodies for a variety of vaccines you have received during your life (i.e. mumps, rubella). Last week, I had my first test, and even though I have received a bunch of vaccines in my lifetime, there wasn't a presence of any antibodies in my bloodstream. This week, I am going to receive a MMR vaccine. Four to six weeks later, I am going to have another antibody titer test to confirm that I am still without antibodies. I think it is rare for you to "fail" the first test and "pass" the second, but they still do it twice. Once you "fail" that second test, you are diagnosed with CVID.

I've heard that CVID goes hand-in-hand with ITP, because people with CVID commonly develop other auto-immune diseases. I think the ITP is sometimes diagnosed first, because the symptoms can be much more extreme -- i.e. when you are covered in bruises and bleeding for hours with a bloody nose, you are going to draw a lot more concern than from having bronchitis for 8 weeks straight. Well, in my case anyway.

In my case, the CVID diagnosis -- or tentative diagnosis -- wasn't able to happen until I was several months into remission, because steroids and Rituxin can affect IGG levels.

As for treatment, I'm torn. I understand the benefits of treatment...obviously. However, I'm concerned about the impact that a day long infusion, every three or four weeks, will have on my life. I've heard of the home treatment, but I'm not good with needles (ironic, after having been poked hundreds possibly thousands of times in the past year and a half), so the idea of sticking five needles into myself every week doesn't sound that appealing or realistic.

I'd love to hear your thoughts or more about your experience. It helped me a lot to interact with others with ITP, and I'm interested to interact with others with CVID for the same reason.

Jess

I have had ITP since 1989 and just this year was the first time the Immunoglobulins were tested. However I have a new hematologist after 8 years without one, he is really good [and will retire in about 2 1/2 - 3 years unfortunately].

Different labs have different ranges - these are the ranges for my lab:

IgG: 650 - 1600 mg/dL L
IgA: 40 - 350 mg/dL
IgM: 50 - 300 mg/dL

My IgG is below normal but for now not low enough to treat [believe he said treatment is IVIg] - the other 2 are in the low norm range.

So add me to the list although I don't have CVID, and hope things stay that way!

Melinda,

Your range of "normal" is pretty close to the one I was given with my counts:

IgA = 22 (normal range 70 - 380)

IgG = 283 (normal range 695 - 1620)

IgM = 18 (normal range 60 - 265)

Bummer about your Hemo. Mine is fantastic and has treated many ITP patients. From some of the situations I've read on here of what others experienced with the docs who first diagnosed them with ITP, I am very thankful the doc who caught me was so knowledgeable and willing to work with me in regard to treatment. No decision has ever been his alone. We talk through everything in great detail and make joint decisions. I am so thankful for that.

Our lab's ranges are similar Jess, thanks.

I had a really good hematologist when I was diagnosed - then we moved overseas and the one I had in Tokyo was really good too [turned out he knew my hematologist in the States!], then moved to Hong Kong and that one left a lot to be desired, back to the States and my original hematologist. Then in 2004 we had to switch to an HMO and my new MD didn't think I needed a hematologist - Dec 2011 I needed surgery on the root of a tooth and the endodontist wouldn't touch me without a specialist saying ok, couldn't get an appointment until Feb 2012 so the endodontist did agree to do the surgery with an ok from my MD & a CBC [of course platelets low but ok for the surgery].

Kept the appointment with the new hematologist and really like this man, he has a lot of ITP patients and we are on the same page - also he did different blood tests than any of the other 3 hematologists, such as this Immunoglobulin one. It will be hard when he retires.

Hello,

I have been officially diagnosed with CVID. Lucky me. I told my mom that I feel like I've won the immune system lottery.

The last time I posted was right before I went in to get re-vaccinated, which was early November. I got my lab results back today.

I'm still not immunized for rubella, rubiola, and mumps. In addition, my levels are:

IgA = 34 (normal range 70 - 380)
IgG = 309 (normal range 695 - 1620)
IgM = 19 (normal range 60 - 265)

While I have "improved" since my last test, I am still significantly lower than the low end of the normal range. Since I have "failed" two antibody titer tests, I am able to be diagnosed.

On a positive note, I am not going to be immediately treated. My Hemo doesn't think treatment is needed until a patient starts to experience problems with infections. I think it is possible that I won't ever have to be treated, which would be ideal in my book.

My Hemo is supposed to be writing me a long letter in explanation of my test results and my diagnosis, since my next appointment is a few months out. If I learn new information from that, I'll post here.

Melinda & Ann, any news with you two?

Jess

Hello Jess,

Good to hear from you.

I just got my official diagnosis which is.. IgG2 subclass deficiency with specific antibody deficiency and low IgA. My IgG1 is a bit low and IgG2 very low but my total IG is 450 so no immunoglobulin treatment (I'd choose subcutaneous rather than IV, Melinda) until either it goes down to 300 or I get too many infections, which ever comes first, if either does. Ah, except that is for prophylactic antibiotics.. 250mg azithromycin Monday, Wednesday and Friday.

My IgA is 14 but apparently having some at all is better than totally absent.

I didn't totally understand the specific antibody deficiency bit. He said they looked at 10 things and mine was low in 7 of the 10. So he didn't do the vaccination test because he said he'd talked to my haematologist who said vaccination might cause platelet problems, and as he knew the result of the test would be rubbish there was no point.

I don't come to the forum often now but will check this thread for updates from you.

Hi Jess - Nothing new with me. I do have a diagnosis of Hypogammaglobulinemia I noticed in my records - but hematologist said no need to do anything at this point, he said the same thing yours did. I was sick in Sep/Oct/Nov and Dec - not the whole time however, sinus infections and gastroenteritis.

Good to see you - keep us posted!

Hi,

Just checking in to see how you two are doing, Melinda & Ann. Lately it seems as if I blink an eye and six months goes by. I hope you both are still doing well.

I'm hanging in there. I mentioned a letter in my previous post -- this mysterious letter my Hemo was supposed to send that contained in depth information about CVID and that I would post here if I learned anything new from it. Well, I didn't. It took several months to get the letter (apparently there was some confusion at the Hemo office about who was going to mail the letter, and so it never got sent), and by the time I got it, I had already done quite a bit of research on CVID so the letter contained no new information.

I haven't been sick in nearly three months, which is the first time in a long time that I can say that. I thought for sure I would get sick once it started to warm up, because the change in season tends to do that to me. So far though, I'm good. I'm still getting checked every three months -- CBC & IG levels. June was my latest, and everything was pretty much as expected. All of my IG counts were low.

The only interesting development, if you can call it interesting, on the CVID front is that my Hemo recommended that my sister get tested as well. She ended up having slightly low IGG levels and initially came back as not vaccinated on the MMR vaccine. At this point, my mom & sister were both freaking out -- thinking that all of the "fun" I went through with ITP and spending most of the fall sick was going to start happening to her as well. However, it worked out differently for her. She got re-vaccinated for MMR, and it stuck.

Anyways. Like I said above, I hope both of you are doing well! If you have a chance, it would be nice to get an update!

I'm glad you posted because it made me look at lab copies that I got recently. I was tested because of some abnormal white counts which resulted in a referral to oncology. I'm guessing these are okay. The IGM is a little low but probably nothing to worry about.

IGG 1020 (700-1600)
IGA 296 (70-400)
IGM 36 (40-230)

The whites:

Neutrophils - 9450 (1500-7800)
Lymphocytes - 740 (850-3900)
Monocytes - 160 (200-950)
Eosinophils - 10 (15-500)

Sandi, have you heard anything back about your white counts? Maybe you are currently fighting an infection?

Logically (in my brain, anyway), it would make sense that IG levels & WBC levels would both be impacted when a person's body was fighting an infection, because both IG levels and WBC levels impact a person's ability to fight an infection.

However, as is often the case with these sorts of medical things, something that logically makes sense to me does not always hold true.

Sending positive thoughts your way about the white counts!

This was 2 or 3 months ago. I wasn't sick at the time, but had been using Methotrexate which is probably the reason for the weird counts. My whites are still off, but not as bad.

My lymphocyte count has always been low and nobody has ever worried about it. It came up to normal when I was on steroids but that's the only time in the 7 years I've been playing this game. Neutrophils they worry about, lymphocytes they don't.

I've had three chest infections so far this year but just coughing a lot and not feeling particularly ill. Have at last got a GP who is on my side and has given me an antibiotic ear spray which I use when I feel an ear infection coming on and it works wonders as the infection tends to start in the external canal and the spray cuts it dead. Gave up with the oral antibiotics due to the side effects and am supposed to be hearing from the immunologist with a replacement or to get allergy tested for penicillin, but I suspect he's forgotten about me!

I think my Rheumatologist was just concerned because I had four of them out of range. My whites are always off so I'm just used to that.

Ann - what side effects do you get from antibiotics? I have problems with them now too.

Sandi mentioned CVID for Matix and I started doing a lot of research as well. When I read about it I fell like they wrote a book about my son. He had labs drawn last week with no conversion (immunity) to any of the numerous Pneumo antibodies they check for. He also has no immunity to Varicella, which he has had the vaccine twice and had chicken pox twice. He is being seen by the Immunologist next Friday. I am going to ask if CVID could be a possibility.

Good luck with the appointment. I hope you finally get some answers.

Thanks Sandi, me too!!!

Sandi wrote: Ann - what side effects do you get from antibiotics? I have problems with them now too.

Ha! Polite answer.. the runs. But it was worse than that! Azithromycin is common for that so it's not a surprise.

Hi Jess - good to see you, and thanks for asking about me! My hematologist sent me to an allergist because of a gamma globulin injection triggering my ITP and my IgG was discovered low [those are the ones that help fight bacterial & viral infections].

The IgG was lower than last year so will be talking with hematologist next week to see how often to check that. Thankfully it looks like CVID is off the table!

Glad to hear you are doing well - and your sister too! Did she have another blood test to check her immunoglobulin levels?

Matixsmom I hope all went well for his appointment with the immunologist!

Just checking in to see how you all are doing. It has been a long while!

I'm doing well -- still in remission from ITP and not having much trouble with the CVID. I've been thinking about this a bit lately, but I think that I got sick much more frequently before my CVID diagnosis than after. Mostly, I attribute that to a better overall awareness of my body and being proactive about treating it right. I wish it could always be like that and that it could be like that for everyone.

There was a person diagnosed with measles in the area where I work recently, which caused a lot of commotion. I know the idea of vaccination is a hot button topic right now, and the measles "scare" caused a lot of people in my work place to have strong opinions about vaccinating vs. not vaccinating. Few understand or acknowledge that vaccinations don't work for everyone. In an effort to not be classified as someone who willingly (or who's parents willingly) choose not to vaccinate, I found myself explaining CVID to a few coworkers -- that I have been vaccinated for the measles several times, but it didn't "stick." It was an interesting experience that reminded me a lot of the difficulties of explaining ITP.

We shared immunoglobulin-related lab results in the past, so I'll share my most recent ones. They are from a few months back. I am only scheduled to go in every few months these days, which is a nice change of pace.

IGG 410 (normal 695 - 1620)
IGA 43 (normal 70 - 380)
IGM 40 (normal 60 - 265)

My numbers fluctuate a bit, sometimes a bit higher than what I have listed here and sometimes lower. For a while, I noticed an upward trend. I asked my Hemo about it, thinking it might be a sign that I didn't have CVID. He said that since my numbers have consistently stayed well below the low end of the normal range, that isn't likely to be true.

On the whole, I'm doing very well. I have a lot of things to be thankful for! I hope to read some updates from you all, if you are still around!

This is the 3rd time I'm trying to post to you Jess - my server is acting up. So you will get the shortened version (lucky you! ). My dear hematologist passed away unexpectedly late last year so I have a new one as of last month - it's only my IgG that is low and it has stayed steady so she feels it doesn't need to be tested but will do it 1x a year - if I get sick and takes a long time to get better she wants to know. I'm not sure about her, on the fence but not ready to jump off it yet. She says she wouldn't treat the low IgG until it is 200 or below.

I am glad that you are doing well - good to hear! As for vaccinations, if they don't "stick" after having them a few times heck I wouldn't get them either.

Keep doing well and keep us informed!

I was diagnosed with CVID approx 3 years ago now so I will tell you about my experience.

Firstly take what you read on the internet with a pinch of salt. The reason I say this is because CVID is different for each person and the vast majority of what you will find on the internet regarding CVID is where people have gone years without being diagnosed.

When I was first diagnosed I did what most people do and read about and it scared the hell out of me.

Lucky for me my immunologist is amazing and initially spent the best part of a couple of hours explaining what CVID is, what I can expect and how treatment will work.

The first thing they did was take an insane amount of blood and tested me for a wide variety of things. They performed a CT Scan form my head down to my waist To get a baseline.

The main 2 areas they watch are your lungs and stomach as that is where the vast majority of problems occur as that is where we are most susceptible to infections.

As for treatment, IVIG is the main one but should only be used if you are getting regular infections.

You can have IVIG with in hostipal or if it is available in your area at how via subq how it depends if you can stick needles in yourself and it usually takes twice the time to take the same dose.

For me they put me on a regiment of daily antibodies which so far seems to be working although it took a few different ones before we found one I could stomach.

As for side effects, for me it's fatigue, which is caused by your immune system being over worked. The best description I have come acrossed is for an average person their immune system just gently floats along with the occasional hill where as for people with CVID it's more like trying to climb a never ending stairs. Then I have what I call my magic ball of pain as it effects different parts of my body at random times and at different strengths. This I am told is caused by tiny pockets of infection.

I also gets bouts of intense nausea which can last upto 20 mins but this might be caused by the antibiotics.

I also had another CT Scan on my lungs a few weeks ago which is part of keeping a eye on things.

Like most conditions a lot is dependant on your immunologist.

Hi all,

My latest scores:

IgG 430
IgA 13
IgM 58

Still taking daily antibiotics of Septrin, and have amoxycillin on hand in case of ear infections. I got tested for penicillin allergy which was negative. I'm really pleased about that as it's a useful drug to have available.

I also get very tired and am thinking (again) of giving up work but have just moved house and have stuff to buy so will hold on for another couple of months as the salary is useful! I really want to work part-time but can't find a job I like with the right hours so I may just give up altogether and live off savings.

Saw a GP, one I hadn't seen at the practice before, a month ago because I could feel enlarged lymph nodes in my neck for a while. She said there was nothing, just muscle. I didn't believe her and asked the immunologist to look when I saw him this week. He said there are a couple of enlarged nodes there and one on the other side too. He's ordered a CT scan and took lots of blood for virus testing. He thinks it may be a virus hanging about. I hope so because other alternatives are not so nice!

Needless to say I won't be seeing that particular GP again.. she can't even feel a lymph node which is very basic doctoring!

Oh how frustrating! Doctors! I hope those nodes turn out to be nothing, Ann. Let me know.

Had another node biopsied last week. Showed reactive cells and no definite lymphoma that everyone was expecting, so it's either a very indolent lymphoma or an infection that's hanging around far too long. Going to start IVIG on Monday and hope getting the immune system up a bit will get rid of anything. Going to ask to learn to do subcutaneous immunoglobulin at home but don't know if they'll let me straight off.

I only did IVIG once in 2006 when it brought my count up from 4 to just 24 so I don't expect the smaller dose to have an effect on platelets but then I am starting this time with a count of 160! Woohoo!

How are the other CVIDers here doing?

Good to hear from you all. For some reason, I hadn't been getting email updates on this thread -- I didn't know anyone had replied to my last post!

Melinda, sorry to hear about your Hemo passing away! I can understand your uncertainty about your new Hemo, as it can be hard to build up trust with a doctor. I've read / heard of some horror stories with not-so-great Hemos, but I hope things go well / are going well with your new one.

Thanks for the information and for sharing your experiences, GhostRider. I definitely agree about CVID being different for each individual.

GhostRider & Ann, I'm curious. Do you take a daily dose of antibiotic in reaction to some sort of symptom? Or is that a preventative treatment? Did you have a history of frequent infections before this started? This is not a treatment I've ever discussed with my Hemo (who is also an Immunologist), but I also don't have a history of frequent infections. Do you experience side effects from the antibiotics?

Ann, please keep us updated about your node biopsies. It sounds like you are getting some good news (that it isn't definite lymphoma), but the exact cause hasn't been identified. That sounds really frustrating. Keep us updated about your IVIG experiences as well. From what I understand, it's something that you keep doing on a regular basis once you've started. Is that the plan for you as well?

I'm doing pretty well. I don't find myself getting ill or infections more frequently. I do find that things go from "I think I might be coming down with a cold" to "I have a 102 fever, my throat is on fire, and I can barely get out of bed" overnight -- as was the case last month when I was dealing with strep throat for about two weeks. Once I got over that, things were good. My busy season at work just ended, and with much relief, I am embracing the slower paced fall and am excited that football season is back!