1. Community
  2. Heart Health
  3. Autoimmune Disorders

IgG4 diagnosis

Posted , 2 users are following.

nick72107
nick72107

Last July I had a submandibular salivary gland swell and was removed. Diagnosis was IgG4 disease or a benign rare Kuttner tumour. In December another saliva gland, the parotid on the same side felt swollen. Today I learned the diagnosis after the biopsy specimens were checked at Sheffield and UCL London was an autoimmune IgG4 disease. The head and neck consultant told me he wasn’t going to start treatment in case it masks the condition in any other organs. He has referred me to have scans and tests of abdominal organs in a months time. I am concerned there is no immunology department at the hospital and thus no involvement  from that speciality. Possible referral to a unit in London who deal with salivary gland conditions of this type was discussed. I am a 55 year old male, wondering what to think next....would anyone like to join my discussion?

0 likes, 8 replies

8 Replies

  • millie89422
    millie89422 nick72107

    Posted

    Aren’t they benign lesions? Anyway why not travel somewhere out of your area, maybe another neighboring country that has what you are looking for( testing wise)?

     It would be great if you could travel to New York and visit our New York Eye, Ear, Throat etc Hospital on 14th Street between first and second avenues. Well renowned serivices for illnesses from neck up. Has been in existence for over 75 years. Also on first avenue exist the major hospitals that treat your issues. 

    I know you want to be where you know where you stand. I did some reading on cases like yours and it said that it’s rare that it leads to malignancy. But must be careful because it’s symptoms can mask other illnesses like a sick liver. 

  • millie89422
    millie89422 nick72107

    Posted

    Are you on Predisolone ? Steroids?
    • nick72107
      nick72107 millie89422

      Posted

      the consultant mentioned the steroid treatment and a monoclonal antibody called something like Rituzimab..however he said he was not going to start any meds until after results of body scans especially pancreas and liver..
    • nick72107
      nick72107

      Posted

      consultant says it's an autoimmune disease condition not a cancer. refers to IgG4 disease...my concern is whether it's confined to saliva glands or in other organs....do you know of a centre of this type of disease?

  • millie89422
    millie89422 nick72107

    Posted

    That’s why you haven’t been started on meds because they have to watch it doesn’t spread to other organs. Only time and testing will tell. If there’s any info you need me to get for you please let me know. As I live in New York City. 
    • nick72107
      nick72107 millie89422

      Posted

      i understand the need for the scans but I'm concerned at the speed of response to the diagnosis. after all an igG4 type disease was diagnosed last Summer in my first salivary gland. now that its been identified in a second salivary gland, shouldn't I be referred to a specialists in this area to get them involved right away even before the results of the investigations into any other organs is carried out?

    • millie89422
      millie89422 nick72107

      Posted

      I don’t know how things work where you live but here NY if a person is not referred to a specialist, the patient finds not only a second opinion but there are many places to go and be able to see a specialist. We don’t have to wait for a referral . 
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.