Just diagnosed with IgG4 disease - talk to me!!

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. ??

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

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.