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!!
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/
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.
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.
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.
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.
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
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. 👀
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
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
Hi again Linda
Wondering where you are in NZ? Are you the Tauranga Linda on the Facebook igg4 website?
Regards
Deirdre
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.
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.
Hi I had head and neck symptoms for 10 years. Enlarged lymph nodes, sinus issues and most recently very enlarged lachrimal glands in my eyes. The Doctors couldn’t join the dots until recently but now Igg4 is confirmed. That’s a big relief just to know. I started high dose steroids about 3 months ago and the dose is being reduced. My eyes are much better and I generally have more energy. Previously I would retire to bed around 9pm. I’ll just have to see how I get on with the help of my immunologist. I’m leading a normal life and work full time and am lucky compared to others. Happy to respond to any queries.
Hi
Glad you are feeling better and have an answer.
How were you diagnosed? Did you have high serum igg4?
Hi. The lachrimal gland swelling was the final clue. I happened to be on holiday in India and saw an ophthalmologist when I was there. She said it may be IGg4 almost instantly. In summary blood tests (high Igg4)and histopathology from an eye biopsy confirmed the diagnosis. Incidentally just today they gave me results from a re-examined lymph node biopsy taken a decade ago. It also is suggestive of Igg4. Its extremely rare and even a lot of immunologists don’t know much about it. Good luck!
Thank you. Very interesting. I am trying to get a diagnosis but my normal serum igg4 is a problem. I have polyneuropathy and the neurologist is going to do a nerve biopsy to get more clues. I have the sinus, dry eyes and thyroid issues also. They looked for Sjogrens first but negative blood tests. It’s a long hard road eh?!
The problem with getting a diagnosis is that most specialists nowadays are very focused on their own area of expertise. Also interpreting Igg4 results is not straightforward. It’s not black and white as the levels are dependent on the so called burden of disease. If you have a large mass in your abdomen infiltrated with Igg4 you can have very high levels. However if smaller organs are affected it may still be Igg4 related but serum levels can be normal. You really need to see a super specialist to be sure. It’s very complex. I shifted between ENT, immunology and then finally ophthalmology before I was diagnosed. It took years. Good luck.
Thank you Naresh. I share your thinking on the serum level and the blinkered specialists. I have now seen all disciplines and they share a very secular focus! I will use your comments in my Neurology consult this arvo.
Hi Deirdre 44070, naresh3, and nick72107, I share all of your concerns re team of docs, treatment, etc. I was diagnosed for sure about 2 weeks ago. Back in April I had my 3rd stroke and on those scans the amazing radiologist, God Bless him/her, noted tumors or swelling on both lacrimal glands and with my noted history recommended I be tested for IgG4. WHAT? WTH is THAT? In hospital it was blown off. They were only focused on the stroke and my heart. "Oh you can follow up with that when you get out", is what I heard. Guess what? Cuz no one knows what IgG4 is, right!!! So bcuz of my vision from the stroke I go to the eye dr. I mention the lacrimal tumors to him. He says I need to see a "neuro-opthalmalogist", I have never heard of one of those but o.k. From a small town in DE up to Wills Eye Inst in Phili we go! We ask him about the IgG4, like you say, he looks at us like we have 2 heads and asks where we hear about that and we tell him about the stroke scans. He does his own CT of the lacrimal gland then orders the blood test for the IgG4. In the meantime I have a biopsy of the gland. Now I look like Rocky, like I've been punched in the eye and it feels like something is on the back side of my eyelid scratching my eye when I blink. I'm guessing its from the dry eye? And yes, the IgG4 level is way high, the biopsy comes back, no cancer, no lymphoma, its the eosinophil pseudotumor thing with the IgG4 high serum level (I think is what it all is, I haven't seen the biopsy report yet, I see him on the 2nd) So I'm kind of in the same boat, trying to figure out who treats all this, the neuro-op can treat the lacrimal tumors, BTW not only is the IgG4 rare but I also have the lacrimal gland tumors bilaterally, which is also rare! Why the heck not! HAHA But so IgG4 can also be treated by my rheumatologist (I have been dx with fibromyalgia for like 20 yrs, but is it?) Then I'm reading maybe I should go to an immunologist? I don't have one of those yet. But #1 who will follow the tumor to be sure its shrinking and/or doesn't come back. #2 Who is the one to follow the IgG4 in general, to treat but also to follow if it flares or hits another organ, or #3 do you just wait to see what organ it hits next? I already have heart issues, I'm waiting to get a "loop" internal monitor to see if I have A-fib. I've had 1 heart attack, 3 strokes. I have stage 2 kidney disease, now wondering if the IgG4 is to blame. The only good news is the neuro-op thinks maybe the IgG4/Lacrimal tumors may have caused the strokes bcuz they were all in the occipital lobe. I guess my biggest concern it monitoring? Sorry this is so long, its so complicated!