Help with rare diagnosis of IgG4 Sclerosing Disease??

[Christie1983]

I have recently been diagnosed with a rare autoimmune disorder called IgG4 Sclerosing Disease. I know very little about it and have had multiple surgeries and have seen MANY doctors regarding it. So far none of my doctors have seen anything like it and the only reason I reached this diagnosis was because one of my doctors reached out to a colleague at the MayoClinic in Rochester, MN who has 8 patients with this disease. I just want help understanding it and maybe to reach out and speak to anyone else that has this as well.

[rosebudzzz]

How do we reach this Dr Stone I keep hearing about? My sisters boy friend is fighing with this lgg4 and we live in Baltimore and he has been in and out of the hospitals and is on so many pain killers its crazy. Trouble breathing now and the doctors here keep cuting on him its crazy. I can be reached on fb roselubinskiwilkes. Thank u

[mdwildflower]

I'm sorry to hear about the pain your sisters boyfriend is having.  My husband was diagnosed with IgG4-RSD in 2015 and was made a type 1 diabetic by a surgery he didn't need from this often misdiagnosed disease which surely contributes to the fight his body takes on daily.   He continues to relapse about every 6 months and has only been treated with steroids for the flare ups.   We are trying to get him on Rituximab to see if that treatment will work better because long term use of steroids is problematic in itself.  One bit of advice for those using steroids, START MUCH LOWER!!!  There is no strong study/studies out there of how much to start a patient for disease control (regardless of the disease) and we learned it is effective much lower than many doctors are prescribing.  Question your doctors if your dose is so high.
Regarding medical help in the Baltimore/DC area, I posted a response earlier about Dr. Sean Whelton @ Georgetown University Hospital.  He has the experience with IgG4, if he will see new patients.  Good Luck!  

[kizzyma]

I am a 24 years old and I was diagnosed IgG4 related disease and celiac a few month ago. I am too very happy when I found other people with this disease! I have IgG4 disease in the nose and sinus. I have been two surgical because of chronic sinusitis. This disease makes the scar on my nose and has damaged my nasal bone. Really I am worried about my future with this terrible disease.

I have gluten-free diet and I use Prednisolone, IgG4-level has lowered little bit during the follow-up. I was surprised many of you commented about celiac or gluten-free diet has helped. Now I have been thinking what would be connection between celiac and igg4 disease... Someone said in this post that her sister's IgG4-level has fallen after gluten-free diet.

If you have IgG4 disease in nose or sinus it would be nice to know what is your situation in this moment.

[craftyhamster]

Wow I am so happy to have found this post. I am a 39 year old female from Canada, and I am currently being investigated for iGg4 disease, after my blood work showed an elevated iGg4 level. I am still requiring further bloodwork and scans that are yet to be scheduled. I have suffered for most of my adult life with severe sinusitis/rhinitis, headaches and bilateral growths in my middle ear that prevent me from hearing properly or even travelling by airplane (my ears cannot equalize pressure). I have had tubes in both my ear drums for almost 13 years, but now the growth in the middle ears will not allow for a tube insertion any longer. I have had two major surgeries in both ears to remove the growth/scar tissue, only to have it all grow back in less than two years. My next option is steroids and/or Rituximab, neither of which I am interested to go ahead with at this time. I am now looking at trying a gluten-free and maybe even a full-on anti-inflammatory diet to see if anything will help. Would love to hear form others who have head/neck symptoms like myself, and how things are going for you.

[donneyray]

I was in the hospital and they found I had IgG4 Feb 2016.  I was given prednisone and rituxin infusions alone with cellcept and viread.  The tumors on my organs did not get any larger and the ones behind and in my eyes shrunk.  I was taken off the prednison and the rituxin was changes to every 6 months.  Now the tumors have gotten a lot bigger and I have non stop presure headaches.  My vision has gotten real bad and the double vision is back.  The doctor has put me back on infusions every 4 months with one two weeks after each of them.  I will be starting the prednison again in a couple weeks after more MRI test are done.  Then the doctors will decide what steps to take next.  I started feeling really good until the prednisone was stopped and rituxin infusions were changed.  

[donneyray]

I was in the hospital and they found I had IgG4 Feb 2016.  I was given prednisone and rituxin infusions alone with cellcept and viread.  The tumors on my organs did not get any larger and the ones behind and in my eyes shrunk.  I was taken off the prednison and the rituxin was changes to every 6 months.  Now the tumors have gotten a lot bigger and I have non stop presure headaches.  My vision has gotten real bad and the double vision is back.  The doctor has put me back on infusions every 4 months with one two weeks after each of them.  I will be starting the prednison again in a couple weeks after more MRI test are done.  Then the doctors will decide what steps to take next.  I started feeling really good until the prednisone was stopped and rituxin infusions were changed.  

[kycso]

are you feeling any better? Does the gluten free diet works for you? My mom is in ontario and diagnosis as igg4 after remove the orbital glands from one eye. Her eyes are swellon again, and now extended to other area like salivery gland, sinus, and she has asthma , double vision, lost sense of smell sometimes. She did not try any medication. the dr believed the side effect would make he worse then what it can cured her. However, I am not able to find a specialist in IGG4. Hoped you will feel better!

[darrenperth]

Hi everyone I am Darren from Perth Australia have had my aorta replaced and the top of my femoral artery and lost the main blood supply to my left kidney. The doctors tell me that igg4 did the damage and now it is attacking the ends of my grafts that make up my aorta. My immunologist wants to give me infusions to supress my immune system. if anyone has any information about this it would be greatly appreciated    

[poodle12]

to Wigmar 333.  Please let me know where in Australia you are being treated because my daughter has just been diagnosed with igG4.   We have not yet started any treatment because we are trying to search the best we can do for our daughter in Sydney.  Many medics do not appear to know much about this 'rare' disease and it is very scary and confronting.  Please write back your comments.
Poodle 12 Sydney

[Therese3]

The medication RAYOS 1MG HAS HELPED ME TREMENDOUSLY!
An abdominal tumor was removed in Jan. 2015 and it grew back and doubled in size and I was diagnosed with IGG4 inflammatory process in April 2015.   I was on Prednisone 40mg that shrunk the tumor, it was later changed to  methylprednisone due to extreme anxiety and increased heart rate.  I tried Imuran (which caused Hives) and Cellcept (which caused extreme nausea and worse abdominal pain).  These side effects did not begin until 3 weeks after I started these medications.  I went to a new rheumatologist in Dec. 2015 who prescribed Rayos and the abdominal pain is almost gone!  I may have to have 4 infusion treatments of Rituxan .  But the RAYOS has given me so much relief these last few weeks.  Praise & thank God!