Immunoglobulin Deficiency

Hi,

I was diagnosed with ITP in August of 2011. After eight months of Prednisone, Dexamethasone, and finally Rituxin, I was finally in remission as of April 2012 with counts consistently in the low 300k range. I was having monthly blood tests through September, and at my test earlier this week, my doctor also tested my iron level and my immunoglobulin levels. I finally got the results back, and those counts were all significantly low. I'm waiting on the letter with the specific numbers, but as I was trying to take in the information over the phone, my counts were all significantly lower than the lowest end of the normal range.

My doctor believes that because it has been a good six plus months since my last Rituxin infusion, it is extremely unlikely than the treatment would still be having any sort of effect on my counts.

Right now, the plan is for me to take iron tablets two times per day and to monitor my illnesses and infections. If I have a fever above 100, and I supposed to go into the clinic immediately, and if I have any sort of illness or infection that does not respond normally (I guess this is left to my interpretation), I am supposed to go to the clinic immediately.

I am scheduled for a blood test in December. At that point, if my iron and immunoglobulin counts are still low, we are going to have further discussions. One of the potential treatments is to have regular immunoglobulin infusions.

Does anyone else have a similar experience? I believe my potential diagnosis at this point is common variable immunodeficiency, but it is all still very early. I'm looking for any advice, any information, really anything at this point. I've tried doing some searches online, but I'm looking for more personal feedback.

On a side note, I'm experiencing a lot of frustration with my health in general. The check-in I had with my doctor was the best one I have had since being told I was in remission. I had lost nearly 40 pounds (of prednisone weight, thank you very much), my blood pressure was finally normal (it had been high since starting treatments), and my platelets were wonderful (in the 300k range). It seems like just when things are finally going well, another problem gets added to the plate. I figure, if anyone can relate to this feeling, it is people here!

Thanks in advance for any advice/help!

Jess

Your post has made me look again at my immunoglobulin results from last November. My IgA and IgG were low and IgM normal. I had just ignored it but now you make me wonder. I only got the results with no reference range so I've been searching for that on the web and see that my IgA seems to be particularly low. I shall ask for a retest just to check when I next see the consultant in late October.

I'd be interested to know your numbers when you get them as I have no idea if mine are really significant or not and it would be good to compare. The fact that the haematologist hasn't said anything to me means nothing as they are pretty useless at following things up.

I took Rituxin one year ago my immunoglobulins only just now came back into the normal range, albeit the low end of it.
One of my Hemas said that Rituxin can stay in a patients system for 6-12 months depending on a number of factors, and therefore it makes sense to me that your (or my) immunoglobulins could be depressed for that period of time.
I am no scientist, but it's widely understood that the net effect of Rituxin is similar to Pred/Dex in that they all reduce the efficacy of the patients immune system so that your body kills platelets less quickly, therefore giving you more platelets at any one point in time assuming that platelet production remains constant.
That being said, I don't know for certain if Rituxin affects all immunoglobulins or just certain ones.

Bottom line, what you're reporting is not outside of my personal experience. I would ask the doctor if infusions of immunoglobulins will have a negative effect on your platelet count. I suspect it would.

KO

KO27 wrote: That being said, I don't know for certain if Rituxin affects all immunoglobulins or just certain ones.

My first reaction to Jess's post was to think that it's the rituxan lowering the levels but then I thought that that would likely be only the IgG and not the others. Does anyone know?

Ann,

Sorry for the drastically late reply. I commented on your other post.

My September numbers...

IGA = 22 (normal range 70 - 380)

IGG = 283 (normal range 695 - 1620)

IGM = 18 (normal range 60 - 265)

I was also tested last week, and my numbers were slightly lower than that per my doctor, but I haven't yet received the results in the mail to know the exact count.

KO27,

My Hemo talked of this -- that Rituxin could affect the numbers. I am under the same impression as Ann, that it wouldn't affect all three levels (IGA, IGM, and IGG). Additionally, my Hemo specifically said that he had waited over 6 months since completing Rituxin to test the levels due to the effect it can have on the counts. In September, I was about 7.5 months out from Rituxin. In October, I was about 8.5 months out from Rituxin.

I had an antibody titer test last week, which tests to see if you have any antibodies in your bloodstream from vaccinations you have received, and I do not -- which means that the vaccinations did not work (for things like mumps, measles, rubella, etc.). Apparently, that is part of CVID as well.

Thank you, thank you, thank you for both of you posting. I sincerely apologize for the delay in my response. I've remembered to check the "check this box to be notified of replies to this topic" box, so I will see if you comment back.

Jess

Great to hear from you. It's lovely to hear from someone going through the same thing. I'm waiting for an appointment with the immunologist to get a proper diagnosis.

I had a hepatitis B vaccination, a course of three injections last year and the test for it afterwards came back negative so it didn't take. So that's maybe an indication.

My levels are:

IgA = 14

IgG = 450

IgM = 57

They say the M level is normal but according to your range it's just below, so at best it's low normal. Last November it was 73 so that's disappointing.

I don't know if my IgG is low enough to treat, they may just do watch and wait for a while but I'd like to treat to see if it helps with symptoms. I could cope with home treatment, don't mind the needles.

Keep us updated.