Hypogammaglobulemia caused by carbamazepine
Sept 8, 2014 22:28:01 GMT
Post by bellaboo123 on Sept 8, 2014 22:28:01 GMT
Hi,
I hope someone can help me.
I have been ill for 3 years with a variety of illnesses / conditions, severe anemia, severe vitamin d deficiency, fatigue etc. It was eventually decided in January of this year that I had developed chronic fatigue syndrome. A blood test was ordered and blood results showed low immunoglobulin levels. As a result of this, the CFS was dismissed.
I was refereed to an immunologist who told me I had CVID, administered some vaccines and then told me to go back and see him 4 weeks later. I eventually saw him 8 weeks later as my blood tests got lost, whereupon he informed me that my response to the vaccines was good, even though my IG levels had not changed. He then said this ruled out CVID.
Firstly I was seriously annoyed that he had told me I had CVID when I hadn't, if there had been ANY doubt whatsoever, he should never have said that. I had done a little research, from official sources, gained an understanding of CVID, accepted what I was in for and was in a strange way pleased to discover there was a reason, which something could be done about, why I had gone from a very fit and active young person (26) to the total opposite. Anyway....
Discussion followed and the immunologist decided that a very low dose of carbamazepine / tegretol taken over 3 years ago for 3 months was responsible. I asked him why the levels were so low, given I hadn't taken the drug for 3 years and how long before it increased?
He said it can happen, but that in 6 - 8 years my IG levels should be back to their normal levels. I asked why I could not have the IV treatment he told me I would get for the CVID and the answer was cost. I'm in the UK, so the NHS does not provide this unless absolutely necessary.
I get a cough/cold about every 6 - 8 weeks and have done so for about the last 10 years. Not sure if this is related to the low IGs.
Can anyone tell me if they know of anyone who has had a similar occurence of low IG caused by carbamazepine / tegretol and how long a recovery took them?
I feel like I am being pushed from pillar to post and not getting anywhere at all. I have complained, tried all ways of getting help and am now seeking the information myself! I am still pushing for help from the NHS, but feel the need to keep myself informed aswell.
For reference my ranges are:
IgG 4.6
IgA 0.22
IgM 0.27
IgE - Absent
I apologise that this isn't probably classed as a "primary" immuno deficiency, but hope this is the right place to ask questions.
Any help is appreciated.
Many thanks.
I hope someone can help me.
I have been ill for 3 years with a variety of illnesses / conditions, severe anemia, severe vitamin d deficiency, fatigue etc. It was eventually decided in January of this year that I had developed chronic fatigue syndrome. A blood test was ordered and blood results showed low immunoglobulin levels. As a result of this, the CFS was dismissed.
I was refereed to an immunologist who told me I had CVID, administered some vaccines and then told me to go back and see him 4 weeks later. I eventually saw him 8 weeks later as my blood tests got lost, whereupon he informed me that my response to the vaccines was good, even though my IG levels had not changed. He then said this ruled out CVID.
Firstly I was seriously annoyed that he had told me I had CVID when I hadn't, if there had been ANY doubt whatsoever, he should never have said that. I had done a little research, from official sources, gained an understanding of CVID, accepted what I was in for and was in a strange way pleased to discover there was a reason, which something could be done about, why I had gone from a very fit and active young person (26) to the total opposite. Anyway....
Discussion followed and the immunologist decided that a very low dose of carbamazepine / tegretol taken over 3 years ago for 3 months was responsible. I asked him why the levels were so low, given I hadn't taken the drug for 3 years and how long before it increased?
He said it can happen, but that in 6 - 8 years my IG levels should be back to their normal levels. I asked why I could not have the IV treatment he told me I would get for the CVID and the answer was cost. I'm in the UK, so the NHS does not provide this unless absolutely necessary.
I get a cough/cold about every 6 - 8 weeks and have done so for about the last 10 years. Not sure if this is related to the low IGs.
Can anyone tell me if they know of anyone who has had a similar occurence of low IG caused by carbamazepine / tegretol and how long a recovery took them?
I feel like I am being pushed from pillar to post and not getting anywhere at all. I have complained, tried all ways of getting help and am now seeking the information myself! I am still pushing for help from the NHS, but feel the need to keep myself informed aswell.
For reference my ranges are:
IgG 4.6
IgA 0.22
IgM 0.27
IgE - Absent
I apologise that this isn't probably classed as a "primary" immuno deficiency, but hope this is the right place to ask questions.
Any help is appreciated.
Many thanks.
