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Have joint and chest pain and been ill, lung infections are constant. Found to have low IgG1. Suggest?

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Allergist and Immunologist
Practicing since : 1999
Answered : 584 Questions
Been Sik for 5 years, finally they found low IgG1 and very low IgG3

Have had joint and chest pain and been ill for a long time, lung infections are constant...could thi be HIV or CMV
Posted Fri, 23 Aug 2013 in Asthma and Allergy
Answered by Dr. Sujoy Khan 1 hour later

Welcome to Healthcare Magic.
Recurrent chest infections (bacterial infections) requiring prolonged courses of antibiotcs, usuallyIV, or hospital admissions requires investigations into immunodeficiency.

Total IgG levels (if very low) will mean subclasses IgG1, IgG2 or IgG4 will also below.
It would have been useful if you had provided with the exact values.
The squamous metaplasia on you medical history requires further clarification as to site and when it was identified.

The problem with interpretation of low IgG values is your medication history mainly prednisolone. If you are using this long-term, then this can lower immunoglobulin levels, so caution is required in making a diagnosis of primary immunodeficiency.
In HIV infection, IgG levels usually are RAISED but a complete viral screen is done if there is a clinical need.
CMV can lower IgG levels, but only when CMV enteritis is severe and untreated.

Discuss these options with your doctor.
Immunoglobulin replacement theraoy long-term is an option after a complete evaluation suggests a primary acquired immunodeficiency.

Best Wishes.
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Follow-up: Have joint and chest pain and been ill, lung infections are constant. Found to have low IgG1. Suggest? 5 hours later

Thanks for your quick response - you have no Idea how much I appreciate it, for 8 years now I have been seeing doctors and trying to get answers for chest pain and cough.

My second or third respiratory doctor noticed I had reduced immuno numbers but did nothing, I eventually went and saw an immunologist, and she did a lot of bloods, apparently she missed the result for the Serum IgG Subclasses, and my latest respiratory guy found it in my history and confirmed it again today.

I have CMV IgG Positive but not HIV - still waiting on Antibody Titre then Intragram assesment (I have no idea what those last two are could you explain) - been in hospital with Influenza A and Heomopholus Influenza (spelling) and coughing up blood, they did a lot of tests and biopsies as they were expecting Sarcoid, but they didnt find it.

My IgG results are below, can you explain them to me

Total IgG 5.3
IgG1 3.2
IgG2 1.6
IgG3 0.09
IgG4 0.15

I have an enlarged spleen as well

I am pretty unsure what all this means and would like to know the likely future plan, I am not scared to die, so you can be blunt with me, to be honest the only issue I have is I want to be sure that there is not a sexually transmittble disease that can cause this, I would hate to have made my partner sick too, and she has the same chest pain around the spleen as I have - ironically the person before us in the unit also fell sick?

When they admitted me they had to pump me full of steroids - because my lungs were full of puss and blood and inflamation - so I dont know if this affects the test

My spleen is 14cm - not sure what else I can tell you but I assume I will soon see a heamatologist and Immunologist, I can buy 3 weeks off work, but is this more serious, they are talking about a monthly IV antibiotic - the CMV wold have been with me for quite a few years probably something like 7 untreated...I am allergic to penacillan
I had a course of Methotrexate and prednisone many years ago as they thought I had an overactive immune system (how ironic) but this all started after two things.

1/ I had some antiretoroviral drugs for 2 weeks after exposure to a suspected HIV carrier
2/ I cant help but think this all started when I got an immunisaton before I went Overseas in 2008 - everyhting went down hill from there

Could you explain what is likely to happen next and what those numbers mean - thanks
Answered by Dr. Sujoy Khan 3 hours later
Sorry for the delay in the reply as I just finished my clinic.

With the history of past use of methotrexate and steroids, it is likely the immunodeficiency is secondary, but then again you do NOT see an enlarged spleen, such a prolonged history of chest infections.

My hunch is: Common Variable Immunodeficiency (CVID) where granulomatous complications lead to enlarged spleen, lung problems with decreased oxygen transfer and immunodeficiency.
Antibody levels and titres are usually undetectable as you lose antibody levels against bacteria and viruses and memory cells are low. This is (memory B cell levels) becoming an important test to 'grade' the severity of CVID.

The usual 'wait' for a diagnosis is between 2-10 years, because of non-involvement of Immunologists. So I am glad that you have found one.

Intragam is a type of immunoglobulin therapy where IgG is replaced in the form on intravenous or subcutaneous injections 3-weekly or once-weekly as the case may be. The quality of life improves dramatically.

Let me know if I can be of further help.
Best Wishes.
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Follow-up: Have joint and chest pain and been ill, lung infections are constant. Found to have low IgG1. Suggest? 8 hours later
Hi Thanks for the fast response - the doctors here are not that good (but I have found one good one) they just wont listen to patients, so I need to prove CVID - how can I prove the diagnosis, is there a test at all?

The methotrexate was ony a trial for 2 months and quite a few years ago... the Prednisone or Prednisolone is used only as needed and usually for less than 4 days at a time - it has not been used long term for many years

I need to find a way to ahve doctors listen, can you please tell me what blood tests to take next and what each type will look for, If I ask for a particular blood test like LDH etc they will ask why and if I dont know why they just laugh at you....Doctors here just dont listen at all
Answered by Dr. Sujoy Khan 4 hours later

That is one of the problems with diagnosing CVID - no one test but a constellation of signs, symptoms, blood results put together after excluding other causes helps you arrive at the diagnosis.
Also starting Ig therapy and seeing response (such as hospital admissions, blood count normalisation) helps with the diagnosis.

Tests that help:
1. Serum Immunoglobulin levels & antibody responses to vaccines
2. Absolute CD3 CD4 CD8 CD19 cell counts with memory B cells
3. CT scan findings spleen
4. if lymph nodes are present, histological diagnosis to see if it is lymphoid nodular hyperplasia
5. HRCT Chest (bronchiectasis etc)
6. Some patients develop autoantibodies

See this site for a better understanding:
WWW.WWWW.WW uk/home/standards.htm
WWW.WWWW.WW uk/home/standards-CVID.htm

Best Wishes.

Above answer was peer-reviewed by
Follow-up: Have joint and chest pain and been ill, lung infections are constant. Found to have low IgG1. Suggest? 11 hours later
Thanks Doc,

Looks like it is CVID - not sure how I acquired this, could it have been from a vaccination I had in 2006 for german measles.

They have just injected me with pneumococil (spelling) vaccine - to see if my immune system responds, aparently this has to be done before they can try the Intravent

So whats the outlook for me - I still have an infection in the lungs that the Azyrthromiacin is not getting rid off - does this mean that if the antibiotics wont help me I am stuck with this infection till it kills me?

What is the downside of subcutaneous gama gubulin vs IV - they are talking about putting a "Port a Cath" in me so that my veins wont get worn out?

I got told that I had 2 years to live if I went untreated but maybe 15-20 on Intravent if I am lucky - is this about right?

Please tell me could somehting like squalene in the blood cause this - i had the Anthrax and other vaccines in the Army?

If you could just gve me a brief outline of what my life will be like with this disease, the doc has said I cant risk working as a salesman as I will XXXXXXX too many people who may have respiratory issues, but this Intravent is $5,000 per time and my money wont last long with this, I have insurance for total impairment - but not sure this would come under it - because if the Intravent works then I am not impaired until I get the next infection.

I want you to know that the last three people that have lived in my unit have all gotten very ill, could there be somethign toxic in my blood?

Lastly I think i have several autoimmune diseases as well, Psoriatic Arthrius and possibly Rhuematoid as well, will these get any better with Intravent?
Answered by Dr. Sujoy Khan 2 hours later

To answer your questions in reverse order:

Inflammatory arthritis is common, as all inflammatory 'types' of diseases in CVID.
You do not infect people as CVID is not transmissible, so do not blame yourself.
Insurance companies do pay for Ig infusions.

Yes, working as a salesman do have its own risks on contracting diseases, but good 'trough IgG' levels should improve your quality of life and prevent infections. However, once scarring of lung tissue have set in, it is not reversible.

Subcutaneous Ig is now acceptable standard of care, and prevents porta XXXXXXX insertion so do check with your doctor.
A simple battery-free pump is now available, and very minimal maintenance.
Long courses of antibiotics are required until the Ig infusions have started to work.

Best Wishes.
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Follow-up: Have joint and chest pain and been ill, lung infections are constant. Found to have low IgG1. Suggest? 9 hours later
thanks doc, last qtn

I understand that my private health insurance may cover some things, apparently Red Cross can cover the other costs if sponsored.

But what I want to know is I have salary continuance cover - but only if I am considered to be totally impaired - would CVID be the kind of disease that could be seen as permanent disability?

Lastly, if I do get cover I will have small regular income - we would like to move from Australia to Thailand (where my wife is from) however I am not sure if;

1/ The intravent or other would be the same as it is local donors and I am cuacasion not asian.

2/ If we went subcontaneous, could I carry the IgG on a plane and keep it stored in bulk in Thailand or does it need to be kept cold or something?

3/ Apparently Intravent is not ideal for subcotanues use?

4/ Althogh doctors wont listen to patients in ths country - they medical technolgy and skill is very good, would I be better to stay here in Australia or do you think Thailand would have decent immuno doctors to treat me

5/ Whta is this Port a XXXXXXX and how long will it last inside me - can I play sport with it inside me?

6/ Will my treatment stop me drinkng alcohol?
Answered by Dr. Sujoy Khan 1 hour later

CVID is considered a chronic disease with no cure, so whether it falls under permanent disability depends on the Insurance provider. Your doctors will be in a better position to answer that!

Australia is far more equipped than Thailand, and Ig manufacturers in Thailand may actually source European or Caucasian donors - strange it may seem.
Yes, products approved for IV use cannot be used subcut, although not the other way round.
The porta XXXXXXX can stay for well over 6 months.
Sports such as rugby, football or where chest injury is very likely - NOT recommended.
Strage conditions: 4-8 deg C standard refrigeration, not freezer compartment.
The treatment has no adverse effect with alcohol use, although well below limits is recommended especially if your platelet count is on the lower side as frequently seen in CVID.

Best Wishes.
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