Just diagnosed with IgG4 disease - talk to me!!

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Hi there! I have just been given the IgG4 diagnosis. I am keen to make contact with anyone on social media who reads this who has the same condition. My name is Nick, I am 55 years old, and live in Bournemouth with my wife and daughter. I have met the consultant who appears best placed to be in overall control of my treatment, Dr Neil Hopkinson.  I am going to have a CAT PET scan to image any inflammation in my body in the next month. Last year I had a salivary gland removed, and the biopsy suggested a possible IgG4 disease. This January I had a biopsy in another saliva gland, which came back with the same diagnosis. There don't seem to be any support groups locally - although I hope I am wrong - which is a pity because they do exist for most other conditions.Hopefully I will receive one or two replies so that I can begin to understand how to cope with living with IgG4 disease - after all with a young family, wife and job,life must surely go on!! 

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  • Posted

    Nick,

    IgG4 Rd can encompass a number of things. Do you just have IgG4 RD, or have you been told that it is affectinf a particuler part/area/organ in your body? Knowing answer would help direct you to proper support group.

    In meantime check out http://rarerenal.org/rare-disease-groups/  which is for renal tract diseases (Urinary; kidneys, ureters, bladder, urethra) and is UK based. There is also a USA based rare disease group which may have more for you: https://rarediseases.org/

    And at NIH in USA: https://rarediseases.info.nih.gov/diseases/12521/igg4-related-disease

    And you may well find what you need by digging at: https://www.rarediseaseday.org/

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  • Posted

    So sorry, I don't even know what IgG4 disease is. I hope you find someone that you can interact with. I can only speak for myself, if you need to vent or communicate your symptoms, I am here on this forum. I hope and almost sure, there are others that feel the same way. I am a single mom and head of household so I can understand the kind of stress you are under to manage your illness and get back to some type of a normal life. Nonetheless, it is good to understand other autoimmune diseases. Have you look for any foundations for the disease? Sometimes they have groups and their own forums. Best of Luck.

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  • Posted

    So sorry, I don't even know what IgG4 disease is. I hope you find someone that you can interact with. I can only speak for myself, if you need to vent or communicate your symptoms, I am here on this forum. I hope and almost sure, there are others that feel the same way. I am a single mom and head of household so I can understand the kind of stress you are under to manage your illness and get back to some type of a normal life. Nonetheless, it is good to understand other autoimmune diseases. Have you look for any foundations for the disease? Sometimes they have groups and their own forums. Best of Luck.

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  • Posted

    You can find some information on this a sight  www.medscape.com...it is autoimmune system  pancreatitis can effect any organ, this is a rare disorder. 

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  • Posted

    Hi Nick, Found a little more information for you, it affects the pancreas, a gland behind the stomach and in front of the spine and can also affect the bile ducts, salivary glands, kidneys and lymph nodes. Its thought to occur when the immune system mistakenly  begins to attack these healthy tissues, glands and organs, common signs and symptom include painless jaundice, weight loss, and non cancerous masses in the pancreas and other organs. Treatment often involves corticosteroids. The condition may recur following treatment and require additional therapy. www.clinical trail.gov.....www.american autoimmune related disease association ( AARDA ).... I have autoimmune disease  Sjogren's and RA ,Thyroid...best of luck to you...hope I've been some help.

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  • Posted

    Hi Nick,

    I was diagnosed a few months ago because os a very thorough Rheumatologist who sent me to an IgG4 RD specialist at Mass. General in Boston, Ma. I have had X-rays,Cat Scans and bloodwork done. I am having a salivary gland biopsy next month. I have had Uveiitis in both eyes. Thankfully, it is getting better. I am new to this too. There are 2 Facebook pages dedicated to this disease and I have found the information there helpful. Good luck!

    Lois

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  • Posted

    HI Nick. My name is Linda a 67year old female from New Zealand. I was diagnosed with iGg4 in Jan 4 years ago. No body knows much about this disease yet. Doctors look at you oddly thinking are you for real when you mention it. I think there are 2 maybe 3 in New Zealand with it. I became obsessed trying to find out about it. I went to the doctor (at white cross after hours clinic) with dull pain around and behind my navel. After blood tests,several scans and biopsy,it was thought to be iGg4 disease. Pretty scarry stuff. My specialist deals with gut problems. He sorted out the pain I was in which was arthritic pain. I couldn't walk far. Too painful. Prednisone sorted that out taken 2 once daily and 3 azathioprine daily.. Great to talk to you. ??

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    • Posted

      Hi Linda

      I am 72, in Auckland and awaiting a possible diagnosis of IgG4 rd which they thought was Sjogrens originally. Apart from  major sicca symptoms I also have polyneuropathy of as yet unknown cause. I should have the lip biopsy results in 2 weeks. I will get back to you then once I know those results. Would love some local support!

       Cheers Deirdre

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    • Posted

      HiDeirdre, I live in London but come from Oz. I have it definitely. Biopsied etc etc   Like you in the old days I was diagnosed sjrogens. My GP over here just looked blankly at me and ignored me when I told him. The specialist at London major hospital looks after me

      i have infiltration in lacrimal glands, salivary glands, punctum of eye. Had a gland removed, botched job too

      i keep ok, hope you do. I never even mention my diagnosis to anyone as it’s meaningless to them!

      I am a retired lady enjoying my life .

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  • Posted

    I was diagnosed about five years ago, roughly 23 at the time. Started with a little lump on my chest and grew to the size of my hand. In the five years they've tried steroids but didn't have any effect on it. I've found more info on the internet than the actual doctor tells you

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  • Posted

    My husband Ralph was diagnosed with IgG4 about a month ago. They first thought he had bile duct cancer but after biopsy of lymph node it showed IgG4. He is currently on 40mg of prednisone. He also has a drain tube in because his bile ducts is completely blocked.  His older brother has this same thing but his started in his sinuses. I still don’t understand this disease. He has had diarrhea for that last 2 days and earlier had very bad stomach cramps that made him not able to breathe. Scared us both.. I pray for all of you with this condition. 
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  • Posted

    Hi, Nick:

    I hope you've found a good medical team to treat the totality of IgG4RD, because it really does take a village, as they say. I've had it for 15 years, but it took 12 to diagnose, which allowed the disease to go unchecked and compromise various organs: eyes, thyroid, lungs and kidneys. I'm a woman and my symptoms began at 30, which throws me way out of the normative statistically affected population, not that anyone in the States knew about the disease at that time.

    I'm glad that your diagnosis seems to have come more quickly so prompt treatment can nip that in the bud. 

    Coping with IgG4RD, for me, is really a matter of having found an immunosuppressant I can tolerate and addressing each symptom as it comes with the relevant specialist. My immunologist is lead on a team of 6 doctors.

    Have you looked into Rituximab and corresponding remission rates? My insurance was initially unwilling to consider the treatment ($30,000 for 2 sessions), but I'm guessing a cost-benefit analysis for remission vs. continuous care swayed them. It didn't work for me (anaphylactic reaction), but that seems to be way outside the norm: "life-threatening anaphylaxis was rare" 

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3580676/

    IgG4RD, like most auto-immune diseases, I assume, is unpredictable and can be infuriating. You never know when something will trigger symptoms, or how long they will last. The mechanisms that cause the body to attack itself remain unknown. Treatment is as much an art as a science.

    So, I won't stoop to telling you to take it one day at a time. But, I can tell you that it's an ebb and flow, and you'll figure out ways to navigate work and family and friends. This many years into it, it's still difficult to accept that there are simply some activities I can't do anymore. But, wow, am I excited and so grateful for the ones I can. And I push, and I push and a lot of times I'm surprised at just exactly what I can do.

    Best wishes.

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    • Posted

      Hi Nick, and Everyone, 

      FYI.....Apparently there is help out there with Rituxan/Rituximab treatment from I guess whoever makes it...There is a foundation that provides financial assistance if you make between a certain amount of $$$.  You should ask your doctor, if they don't know anything about it, have them check into it...It's the only way I could get it, and I'm sure it's the only way many people get that and many other treatments for their RA and cancers !!!

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