Just diagnosed with IgG4 disease - talk to me!!

I have been diagnosed with IGG4 and am under a London rheumatologist who has an interest in this condition. I had a very messy surgical removal of sub mandibular gland by surgeons who refused to listen to me, I had previously been diagnosed in Australia. They insisted it was cancer appearing . Wrong of course Never again. Important to keep away from doctors who have no knowledge of this disease.

i am late sixties

Hi,

I am a 68 year old diabetic male and was diagnosed with IGG4-RD exactly two years ago. I have had dry mouth (stone dry) and dry eyes for about 10 years, but my GP and Ophthalmologist offered no solution. My Salivary glands under my jaws were really swollen for a couple of years but my GP did not see anything wrong with it. Two years ago I developed a lump on the side of my face next to the ear. After an MRI I went to Memorial Sloan Kettering in New York to check out for tumor/cancer. They did a biopsy of all my salivary glands and concluded it was not cancer but inflammation of the cells and asked me to see a Rheumatologist for possible Sjrogens syndrome. In the mean time I started loosing weight rapidly and my breathing became shallow. An MRI of the chest and abdomen was done. The lungs, in the words of the radiologist had too many lesions to count. There we lesions also on the kidneys and the liver. A lung biopsy and extensive pathological study of the tissues confirmed there was no Cancer. My Rheumatologist at Duke Medical Center had the tissues tested for IGG4 fibrosis, which came out marginally positive. The IGG4 blood tests were way way off the chart. Also the AST/ALT levels which had been normal for years were well over the max range. All of this happened in a span of 2 months, and I was lucky my Rheumatologist homed on the diagnosis right away. Another notable symptom I had was BPH which was quite severe. I was started on 40 mg of Prednisone. The very first dose cleared the BPH symptom. The prednisone dosage was tapered in steps form 40 mg to 30, 20, 10, 5, 4, 3, 2 &1 over a 12 month period. In six months all the the lesions in my lungs cleared. The lesions on my kidneys reduced a bit. The AST/ALT and the IGG4 levels returned to normal levels. I started producing saliva gain, but the lacrimal glands did not recover. I was able to reduce the prednisone dose to 4 mg but further reduction brought back the BPH. For the last 12 months I have been on a maintenance dose of 5 mg of Prednisone and a 400mg of Flomax (for BPH). I am on insulin, but have kept my A1c under 6.5 by taking an additional shot of rapid acting insulin when the blood sugar peaks because of the prednisone (predictably after about 8 hours). I also bruise easily because of the continued use of steroid. One thing that has helped me a great deal is going to the gym every day and doing both strength training as well as aerobics. Given that there are not too many tricks in the tool box, I plan to continue with the steroid for the moment and save the Rituximab for a latter date.

I lead a normal life, have never taken steroids, have diagnosed igg4 with blood tests and pathology. in lacrimal glands , lymph and sub mandibular i live in LONDON

I Would love to talk to you! IM SO Lost And Confused ON WHAT TO DO! ANY advice would be great!

hi! i was recently diagnosed and would love to talk to you!

There are a few sites , about three, with lots of support, so check them out. What are your symptoms, everyone is different. Dont feel alone, Dont feel scared , this disease is treatable , the main thing is diagnosis then fiinding a consultant with an interest, even if you have to travel ,most patients do seem to have e to if they are not in a big city, look up the igg4 groups, then you can private message people who will help you. i am in these groups.There are apparently only about 200 patients in UK but it is believed loads more not yet diagnosed, so you will find your GP will know less than you.

nick, sorry, meant to send this last message to newly diagnosed KATHY

Hi Kathy 0271 , What type of dr. do you see? Most of us see a rheumatologist along with the specialist of where the IgG4 has "attacked"! For you, I'm guessing and ENT/HEAD & NECK specialist? It also depends on where in the world you live as to type type of treatment you receive and the knowledge base people/doctors have. So, yes, by all means hit FB, Living with IgG4 is a great group on FB. Many ppl on it from all over the world. From that someone started a group in England, you can get to from "Living with..." Wishing you well 😃

Hi Nick! I'm Jazz and I recieved my diagnosis of iGG4 last year at 25. Life does go on! A Year into this and I can say it does get easier to cope with as you learn what works best for you! Glad I googled and found this. It didnt occur to me to join an online community before