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Been Very Unwell. Deficient In IgG1 And IgG3. Diagnosed CVID. Recurrent Chest Infections. Immune System Not Responding. Help?
Question: Hi Doc,
Where to start?
I have been very unwell for about 7 years now - but recently they have noticed that I am deficient in IgG1 and IgG3 and it looks like I might finally have a diagnosis as CVID they suspect that my Low O2 sats were from Bronchiastasis from recurrent chest infections and this has also made me borderline hypoxic, they also suspect that the massive joint and chest pains I have been having are from Autoimmune diseases - caused by Immune dysfunction due to Immunological deficiency - I definitely have classic Psoriatic Arthritis and possible Lupos as well as Gout.
My concern is that no one could work this out for years, it is only by chance that my Respiratory Physician looked back through my previous blood tests and found the low IgG1 and IgG3 results, he since did an antibody test to Diptheria / Tetenas which which showed that my immune system is not responding properly (still awaiting pnuemoccocil test as well) - that said I have not even seen an Immunologist (very hard to get into see one as they are sooo busy) but my respiratory doctor has told me to start on Intragram IVIG replacement therapy.
I think he is on the right track, however I want to be sure that other things could not have lowered my IgG results - ie with my massive joint issues, I am often on high dose prednisone 50mg and I have been on Sulphasalazine as well at the time of testing IgG - so could these have lowered it?
So my Questions are;
1/ Does Predinisone or Sulphasalazine lower immunoglobulan to the point of deficiency?
2/ Should I be seeing an Immunologist before going on IVIG therapy?
3/ Is there any disadvantage to going on SubQ IG Therapy for a larger person - I want to still play sport and I do not want a portacath?
4/ I will need some treatment for my rhuematalogical disorders - but obviously I need to lower Immune response in order to help with this issue - but lowering immune response will affect my ability to fight off infections - so how do you achieve both goals - and if I have to do both - what drug lowers Immune response less - ie what drug could I take for Psoriatic Arthritus that would be least damaging to my already low Immunoglobulan?
5/ I have tried Methotrexate and Sulphasalazine with limited result, but what about Humira - which will be best for me?
6/ What is life expectancy for people with CVID with moderate lung involvement?
7/ Did my autoimmune rheumatoid issues cause the lower IgG levels ( I don't flare up, I am constantly attacked with everyday joint involvement so perhaps my immune system is burnt out?) or did the lower IG levels make me acquire rheumatoid diseases?
8/ What are the chances of our children developing the disease issues I have - we have not had any yet but considering it?
9/ Do Rhuematological issues sometimes get better after IVIG therapy?
10/ Could my joint pains be from Bacteria - due to low IgG
11/ Are there any food allergies that can lower IG - I seem to react to certain foods like seafood etc?
Where to start?
I have been very unwell for about 7 years now - but recently they have noticed that I am deficient in IgG1 and IgG3 and it looks like I might finally have a diagnosis as CVID they suspect that my Low O2 sats were from Bronchiastasis from recurrent chest infections and this has also made me borderline hypoxic, they also suspect that the massive joint and chest pains I have been having are from Autoimmune diseases - caused by Immune dysfunction due to Immunological deficiency - I definitely have classic Psoriatic Arthritis and possible Lupos as well as Gout.
My concern is that no one could work this out for years, it is only by chance that my Respiratory Physician looked back through my previous blood tests and found the low IgG1 and IgG3 results, he since did an antibody test to Diptheria / Tetenas which which showed that my immune system is not responding properly (still awaiting pnuemoccocil test as well) - that said I have not even seen an Immunologist (very hard to get into see one as they are sooo busy) but my respiratory doctor has told me to start on Intragram IVIG replacement therapy.
I think he is on the right track, however I want to be sure that other things could not have lowered my IgG results - ie with my massive joint issues, I am often on high dose prednisone 50mg and I have been on Sulphasalazine as well at the time of testing IgG - so could these have lowered it?
So my Questions are;
1/ Does Predinisone or Sulphasalazine lower immunoglobulan to the point of deficiency?
2/ Should I be seeing an Immunologist before going on IVIG therapy?
3/ Is there any disadvantage to going on SubQ IG Therapy for a larger person - I want to still play sport and I do not want a portacath?
4/ I will need some treatment for my rhuematalogical disorders - but obviously I need to lower Immune response in order to help with this issue - but lowering immune response will affect my ability to fight off infections - so how do you achieve both goals - and if I have to do both - what drug lowers Immune response less - ie what drug could I take for Psoriatic Arthritus that would be least damaging to my already low Immunoglobulan?
5/ I have tried Methotrexate and Sulphasalazine with limited result, but what about Humira - which will be best for me?
6/ What is life expectancy for people with CVID with moderate lung involvement?
7/ Did my autoimmune rheumatoid issues cause the lower IgG levels ( I don't flare up, I am constantly attacked with everyday joint involvement so perhaps my immune system is burnt out?) or did the lower IG levels make me acquire rheumatoid diseases?
8/ What are the chances of our children developing the disease issues I have - we have not had any yet but considering it?
9/ Do Rhuematological issues sometimes get better after IVIG therapy?
10/ Could my joint pains be from Bacteria - due to low IgG
11/ Are there any food allergies that can lower IG - I seem to react to certain foods like seafood etc?
Brief Answer:
Secondary immunodeficiency likely
Detailed Answer:
Hello XXXXXXX
Welcome to Healthcare Magic.
You seem to have figured out most of the difficult bits so will answer your queries:
1/ Does Predinisone or Sulphasalazine lower immunoglobulan to the point of deficiency?
Yes, they can certainly do.
And so I am considering secondary (to drugs) antibody deficiency more than CVID.
2/ Should I be seeing an Immunologist before going on IVIG therapy?
Chest Physicians and Neurologists often start IVIG before one gets to an Immunologist, but ideally yes, if you can it would be nice to see one to get the entire picture.
After starting replacement IVIG, cell counts alter so difficult to say for certain CVID (memory B cell compartment).
3/ Is there any disadvantage to going on SubQ IG Therapy for a larger person - I want to still play sport and I do not want a portacath?
Yes, I have started patients directly onto SCIg using the Freedom 60 pump (without batteries either!)
4/ I will need some treatment for my rhuematalogical disorders - but obviously I need to lower Immune response in order to help with this issue - but lowering immune response will affect my ability to fight off infections - so how do you achieve both goals - and if I have to do both - what drug lowers Immune response less - ie what drug could I take for Psoriatic Arthritus that would be least damaging to my already low Immunoglobulan?
That is difficult, although drugs such as ciclosporin do have the least effect on the IgG side, but does not control the arthritis so well.
IVIG replacement therapy should be considered and drugs that had the best effect can be continued.
Biologics such as Humira should not be a problem.
5/ I have tried Methotrexate and Sulphasalazine with limited result, but what about Humira - which will be best for me?
As above.
6/ What is life expectancy for people with CVID with moderate lung involvement?
Infections (recuurent) lower life span.
Check the US site WWW.WWWW.WW
7/ Did my autoimmune rheumatoid issues cause the lower IgG levels ( I don't flare up, I am constantly attacked with everyday joint involvement so perhaps my immune system is burnt out?) or did the lower IG levels make me acquire rheumatoid diseases?
NO
8/ What are the chances of our children developing the disease issues I have - we have not had any yet but considering it?
Data currently unavailable for both CVID and secondary IgG deficiency.
9/ Do Rhuematological issues sometimes get better after IVIG therapy?
Yes.
10/ Could my joint pains be from Bacteria - due to low IgG
Yes, if infected joint.
They are usually swollen and painful if infected.
11/ Are there any food allergies that can lower IG - I seem to react to certain foods like seafood etc?
NO
Best Wishes.
Secondary immunodeficiency likely
Detailed Answer:
Hello XXXXXXX
Welcome to Healthcare Magic.
You seem to have figured out most of the difficult bits so will answer your queries:
1/ Does Predinisone or Sulphasalazine lower immunoglobulan to the point of deficiency?
Yes, they can certainly do.
And so I am considering secondary (to drugs) antibody deficiency more than CVID.
2/ Should I be seeing an Immunologist before going on IVIG therapy?
Chest Physicians and Neurologists often start IVIG before one gets to an Immunologist, but ideally yes, if you can it would be nice to see one to get the entire picture.
After starting replacement IVIG, cell counts alter so difficult to say for certain CVID (memory B cell compartment).
3/ Is there any disadvantage to going on SubQ IG Therapy for a larger person - I want to still play sport and I do not want a portacath?
Yes, I have started patients directly onto SCIg using the Freedom 60 pump (without batteries either!)
4/ I will need some treatment for my rhuematalogical disorders - but obviously I need to lower Immune response in order to help with this issue - but lowering immune response will affect my ability to fight off infections - so how do you achieve both goals - and if I have to do both - what drug lowers Immune response less - ie what drug could I take for Psoriatic Arthritus that would be least damaging to my already low Immunoglobulan?
That is difficult, although drugs such as ciclosporin do have the least effect on the IgG side, but does not control the arthritis so well.
IVIG replacement therapy should be considered and drugs that had the best effect can be continued.
Biologics such as Humira should not be a problem.
5/ I have tried Methotrexate and Sulphasalazine with limited result, but what about Humira - which will be best for me?
As above.
6/ What is life expectancy for people with CVID with moderate lung involvement?
Infections (recuurent) lower life span.
Check the US site WWW.WWWW.WW
7/ Did my autoimmune rheumatoid issues cause the lower IgG levels ( I don't flare up, I am constantly attacked with everyday joint involvement so perhaps my immune system is burnt out?) or did the lower IG levels make me acquire rheumatoid diseases?
NO
8/ What are the chances of our children developing the disease issues I have - we have not had any yet but considering it?
Data currently unavailable for both CVID and secondary IgG deficiency.
9/ Do Rhuematological issues sometimes get better after IVIG therapy?
Yes.
10/ Could my joint pains be from Bacteria - due to low IgG
Yes, if infected joint.
They are usually swollen and painful if infected.
11/ Are there any food allergies that can lower IG - I seem to react to certain foods like seafood etc?
NO
Best Wishes.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Hello again - thanks for the info - i still have some need for advice from you.
I had argued with my doctor that the two times I was tested for IgG levels, the first time I was on Sulphasalazine and the second time I had just had Intravenous Steroids.
My concern is that I don't want to start the IVIG therapy until I can be sure that those two drugs did not sway the test - or is there no harm in trying it, as I assumed once the IVIG starts it will alter my ability to get the results?
I only take the prednisone for a couple of days at a time (4 days max) and sulphasalazine was only a trial for 3 weeks - so to be sure - do you think I should wait and see an Immunologist before I start the IVIG - they were saying I should have a 6 month trial of IVIG and then see the immunologist?
So how long would i have to have stopped taking sulphasalazine and prednisone before I could get an accurate IG Screen - ie could I stop those drugs for 1 week before or would it need to be longer/shorter?
Is there any other test that could confirm CVID?
My doctors comments were that - the IgG levels were too low to be simply prednisone affected and the fact that I have low02 and they found multiple long term infections in my lungs - warrants the IVIG therapy anyhow?
I am borderline Hypoxic - so he thinks it is important anyhow....I wont be telling him that I am talking to you, however he thinks that prednisone could actually raise the IG test not lower it, so I am wondering if I should see the Immunologist before I start the IVIG treatment and before it is too late to do any cell testing.
I did not make antibodies myself to the vaccine challenge - I assume that prednisone and sulfasalazine would not affect this - ie the fact that I dont make antibodies proves that its not a drug related issue - or can these drugs also affect my ability to make antibodies to vaccines?
The reason all of this is important is because I have to make a decision about taking 6 months off work and doing IVIG or going back to work and seeing an immunologist in case it is something else.
Lastly - could a constant chest infection of H influenza for 6 years cause low IgG - are there any other conditions that cause low IgG and you did not say which was more likely....did the arthritic condition cause the low IgG or did the low IgG cause the arthritis
I had argued with my doctor that the two times I was tested for IgG levels, the first time I was on Sulphasalazine and the second time I had just had Intravenous Steroids.
My concern is that I don't want to start the IVIG therapy until I can be sure that those two drugs did not sway the test - or is there no harm in trying it, as I assumed once the IVIG starts it will alter my ability to get the results?
I only take the prednisone for a couple of days at a time (4 days max) and sulphasalazine was only a trial for 3 weeks - so to be sure - do you think I should wait and see an Immunologist before I start the IVIG - they were saying I should have a 6 month trial of IVIG and then see the immunologist?
So how long would i have to have stopped taking sulphasalazine and prednisone before I could get an accurate IG Screen - ie could I stop those drugs for 1 week before or would it need to be longer/shorter?
Is there any other test that could confirm CVID?
My doctors comments were that - the IgG levels were too low to be simply prednisone affected and the fact that I have low02 and they found multiple long term infections in my lungs - warrants the IVIG therapy anyhow?
I am borderline Hypoxic - so he thinks it is important anyhow....I wont be telling him that I am talking to you, however he thinks that prednisone could actually raise the IG test not lower it, so I am wondering if I should see the Immunologist before I start the IVIG treatment and before it is too late to do any cell testing.
I did not make antibodies myself to the vaccine challenge - I assume that prednisone and sulfasalazine would not affect this - ie the fact that I dont make antibodies proves that its not a drug related issue - or can these drugs also affect my ability to make antibodies to vaccines?
The reason all of this is important is because I have to make a decision about taking 6 months off work and doing IVIG or going back to work and seeing an immunologist in case it is something else.
Lastly - could a constant chest infection of H influenza for 6 years cause low IgG - are there any other conditions that cause low IgG and you did not say which was more likely....did the arthritic condition cause the low IgG or did the low IgG cause the arthritis
Brief Answer:
See an Immunologist and get a plan
Detailed Answer:
Hello,
To answer the last bit first, low IgG level will lead to recurrent infections; and immunosuppressant drugs actually prevent you from making optimal responses to vaccines.
But if you are not on regular sulfasalazine and prednisolone has been as low as you put it, then you may have developed CVID and the immunosuppressants have not helped.
I do not know what the IgG levels were or what they are now to comment on the doctor's justification that steroids can't make it that low!
You need to be off all immunosuppressants for 3 months before an IgG level can be taken as baseline when you are NOT on IVIG.
If you indeed start the IVIG trial for 6 months, you need to recheck levels monthly after stopping IVIG to see what the effect is.
There is no single blood test for CVID, but class switched memory B cell % are a marker of how bad it is. There is no genetic test for CVID.
I hope that was useful.
Best Wishes.
See an Immunologist and get a plan
Detailed Answer:
Hello,
To answer the last bit first, low IgG level will lead to recurrent infections; and immunosuppressant drugs actually prevent you from making optimal responses to vaccines.
But if you are not on regular sulfasalazine and prednisolone has been as low as you put it, then you may have developed CVID and the immunosuppressants have not helped.
I do not know what the IgG levels were or what they are now to comment on the doctor's justification that steroids can't make it that low!
You need to be off all immunosuppressants for 3 months before an IgG level can be taken as baseline when you are NOT on IVIG.
If you indeed start the IVIG trial for 6 months, you need to recheck levels monthly after stopping IVIG to see what the effect is.
There is no single blood test for CVID, but class switched memory B cell % are a marker of how bad it is. There is no genetic test for CVID.
I hope that was useful.
Best Wishes.
Note: For further information on diet changes to reduce allergy symptoms or to boost your immunity, Ask here.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Answered by
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