IgG4 Disease? Just diagnosis, looking for information

Posted , 6 users are following.

Hello!

 

Here is a little background after a little more than 5 years of various ailments, several biopsies one of which was removing a lymph gland from my neck my Doctor said I was negative for Sarcoidosis (that is initially what he thought I had). So sent me to see a Rheumatologist who ran more test, went back and looked at my other biopsies (4 in total) and found that I had triple levels of this IgG4 plasma cells, along with some other confirmations from test; she has determined I have IgG4 disease.

Has anyone ever heard of this disease and if taking any treatments for it can you just give some feedback?  

Thanks!

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11 Replies

  • Posted

    Hi there,

    i have igg4 disease, it was diagnosed in April 2015 after I became very breathless. I had various tests and many specialists to try and work out what was wrong with me. This disease is extremely rare and not that much is known about it. Anyway, I was started on Prednisolone 40mg once daily. I have gradually reduced this medicine and was able to come off it in May this year. Once I had got down to 20mg I was started on Azathioprine 100mg once daily, this was then upped to to 150mg. The Aza is working well and my specialist is going to start to reduce this once I have been off Prednisolone for one year with a view of me coming off all medication. I am currently doing very well with 

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    • Posted

      Improvements in test results. Hold in there, there is light at the end of the tunnel. Feel free to ask anything you want to know and I will try to answer the best I can.
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    • Posted

      Thanks for responding.  I am not sure what treatments will be yet. I am in the process of finishing up testing to see if there has been any further spreading.  It has been several years as I am sure you can understand.  But so far you are the only person that has responded that actually has the disease.  
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  • Posted

    Hi,

    I think that the igg4 test is an autoimmune test, which could affect different organs. Mine was  specifically for pancreatitis, but I also have other health issues. Never heard it called a disease before. 

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    • Posted

      It has only gained the name in the last decade, which has lead to some regrouping of other stand alone conditions (depending on the circumstances like your pancreatitis.  The areas affected for me are lymph nodes, salivary gland and eye muscles. What started this five-year search was I had other health issues seemingly different but in fact, all have lead back to this igG4, it had been depositing scar tissue into various parts of my body and as time has gone on it was getting harder for these areas to function.

      I have started a treatment program and it seems to be going well (only a few weeks in).  I feel much better for the most part, however; now I contend with the Meds side effects.  wink, So some days are better than others.

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    • Posted

      Thank you for all the info on igG4. I wii certainly be doing more research on the disease. You are lucky that you have a doctor who can figure these things out. Am glad that you are feeling better. 

      I can not take steroids, as they cause colon problems for me, so don't know what would help.

      Keep feeling better!

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    • Posted

      You are very welcome!  

      Don't give up!

      I was sent by my ENT to a Rheumatologist they have worked miracles in a short time I must admit.  However, I did not have much success with my "general practitioner"/primary doctor.  I just knew something was wrong and kept at it.

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    • Posted

      I have been researching igg4 disease and think that I may have it. There doesn't seem to be many doctors who know much about it, so not much help out there.  It is like putting a puzzle together.

      Thanks again for the info.

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  • Posted

    Hi, I've just come across your post after researching IgG4. I was diagnosed by the eye hospital 6 months ago following a biopsy on an enlarged lacrimal (tear) gland and blood tests. The symptoms I had were a lump above my eye, drooping eyelid and increased intra-occular pressure. I was put on a course of Prednisolone, starting at 40mg, reducing by 5mg every week, which finished after 2 and a half months of treatment. The steroids worked very well, my eye returning to normal in just a few weeks of starting treatment. I have now been off steroids for 3 months and so far have had no recurrence of symptoms. I have now been referred to a rheumatologist to check out joint pains I've been having for a couple of years, along with plantar fasciitis to see if there is any link. My question to you is have you had or come across any joint pain link and have you had any recurrence since coming off treatment?

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