After 3 winters of persistent chest infections, the last one lasting a solid 6 months, I finally got a lung function test 6 weeks ago. All I've been told is that it was fine according to the resp consultants secretary, I have to wait until the end of September to see the Dr and discuss properly.
I also had a CT scan 3 months ago which showed some damage from the infections (luckily not bronchiectasis which is what I was concerned about) and a 14mm nodule in my lower left lobe. I am due another CT scan this Thursday to check if it's growing which I imagine is unlikely as I don't smoke and am 32 and fit and healthy when I don't have a chest infection!
The last time I spoke to my consultant she said if the lung function and CT don't give us any answers she may test for an antibody deficiency. So now I'm pretty sure the previous tests have drawn a blank I am just looking into antibody deficiency. I was wondering if anyone on here has had it and if you have had treatment for it as it seems not everyone gets treatment from what I've read. I believe treatment is injections of plasma, but any information anyone can give me would be gratefully received.
Oh dear, I seem to have done a long rambly post again! Must learn to get to the point haha!
Hope everyone is keeping well
Becky x
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I have hypogammaglobulinaemia (fancy term for an IgG antibody deficiency). Mine might be steroid related, entirely primary or a bit of both (this seems most likely!).
As a child I had no end of sinus, ear, resp and skin infections. Then also started getting horrible chest infections and pneumonias when my asthma got more severe in my late teens/early 20s.
The first test is just a blood test checking the levels of the three immunoglobulins (antibodies) associated with fighting infection - IgG, IgA and IgM. Most people who are low in one or more of these go on to prophylactic antibiotics to try and stop infections.
Then other treatment depends on a couple of things. Firstly which you are low in - the replacement therapy consists of IgG, so IgA and IgM can’t be replaced (so normally wouldn’t have that treatment). Then if your IgG is low they often do a vaccine challenge to decide if replacement therapy is needed. They check your antibodies to strains of a certain type of bacteria called pneumococcus, then give you a vaccine against them and recheck your levels about 5-6 weeks later to see if your immune system mounted a response or not.
If your body didn’t produce antibodies in response to the vaccine (and in some other situations, like if the infections get too severe etc) then you’re normally put forward for immunoglobulin replacement therapy. It’s either given IV in hospital (so into a vein) every 3 weeks or you can self-administer it at home into the fatty tissue below the skin (subcutaneous tissue) every week.
I’m on replacement therapy and do the self administration route
Hope some of that waffle made sense/answered some questions. Happy to answer any others if I can either on this post or on private message if you’d prefer 😊
How long was it from your first test to receiving treatment?
I will be happy to not get another whole winter of chest infections so shouldn't be fussy but I hate the side affects of antibiotics. I've also had to put up with these for the last 3 years! And the sleepless nights and mood swings on pred. But obviously you don't get to choose your treatment.
Thanks, I'm sure I will have many more questions once I've been tested.
I think it took around 5 months from first finding levels were low to be started on prophylactic antibiotics and then a year after that to the replacement infusions.
I had to have a 6 month trial of the antibiotics first to show whether they were helping or not and then some of the delay to infusions in me was because I'm on long term pred and they didn't want to do the vaccine challenge in me while still on pred as it can affect the results (at the time we were still trying to reduce and stop it in between flares).
Since starting the infusions I've been miles better! I still get infections and they do knock me for six a bit, but my courses of antibiotics have halved in the last year and I can actually cope with most of the infections, rather than spending 10 days in hospital for each one!
As Js706 has already said .. I also went thro all the antibody titres and vaccine challenges the outcome of which was that I have lymphopenia. This is a v low level of lymphocytes ( certain white blood cell) which means I get lots of infections.
Anyways ... as she has also said my treatment basically consists of a cocktail of prophylactic antibiotics which I have taken continuously for the past 9yrs. This seems to have done the trick though as I no longer get as many infections!
Hope you get sorted soon...I found that immunology investigations can take some time to get to the root of the problem!
Yes I also suffered worst with chest and sinus infections.. still do occasionally. Also urine and eyes..
I’m afraid that the immunological tests took literally years..😬 however my local didn’t have an immunology dept so that referral added to the wait and then I also had to attend a hospital 200 miles away for other tests.. so all of this made my experience worse I think! I’m sure yours will be much smoother! 🤞
I think it’s just a waiting game.... esp at the moment.
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