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Igg4 disease

Posted , 19 users are following.

steve15859
steve15859

does anybody else have igg4 disease on here?

0 likes, 22 replies

22 Replies

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  • onebratt08
    onebratt08 steve15859

    Posted

    Hi Steve,

    I have not been diagnosed, but am wondering if I mave have IGG4-RD. Have you been diagnosed with it? What kinds of symptoms did you had that lead to a diagnosis?

    I've had numerous health issues, all causing a decline in my health (and I'm not yet 40!) I requested hospital records from a stay 7 years ago. Included I found some blood tests from around the time of the hospital stay (I'd been suffering with a bad gall bladder leading up to the hospitalization, but docs kept telling me that they couldn't find anything wrong with me). There was the full battery of IGG testing - my IGG4 was 115 points above the top of the range. No one explained what that meant to me. Since getting the records, I've been reading up on IGG4-RD and it would make sense given my medical history (several episodes of acute pancreatitis since age 20 and not a drinker, gall bladder removed at 32, reported narrow pancreatic and common bile ducts, many other health symptoms that fall under the categories of eye, mouth, skin, lungs, other digestive organs). I have an appointment with a gastro to follow up on this testing.

    Curious to hear your story.

  • steve15859
    steve15859

    Posted

    Hello there,

    yes I have been diagnosed with igg4 related lung and pleural disease. I think symptoms will depend on which part of your body is affected. One thing I can say is that for probably about 8 months before my diagnosis I was becoming so tired all the time, doing things that were easy suddenly became really hard. 

    i decided to give up smoking but found as the weeks went on I was getting more and more breathless so I went to the docs and they sent me for an X-ray. The next day they rushed me to the hospital and I spent the next week as an inpatient whilst they were trying to find out what was wrong but like you they couldn't work out what it was. It took them a month to work it out and in that time I had severe trouble breathing and extreme tiredness

    have you ever been on steroids and if so did it help with your problems as igg4 disease generally responds to steroids very well.

    it certainly sounds to me like it could be a possibility but I'm not a doctor so don't take my word for it.

    • onebratt08
      onebratt08 steve15859

      Posted

      Not really. I was given a short course of prednisone once, maybe a week's worth, and don't recall anything different (this was to drain fluid that had built up in my arms from an exercise injury-my arms were so swollen that I could barely bend them). Also about a year ago, a doc gave me a short course of hydrocortisone to try. Didn't notice much except it helped relieve some of the fatigue that I have. My preference has always been to avoid steroids though.

  • steve15859
    steve15859

    Posted

    Yes, I have been on steroids for about 9months and it has been absolutely terrible, I will never take them again once I am off them. I thought they supposed to make you better but they cause so many problems.
  • dennis2314
    dennis2314 steve15859

    Posted

    Steve,

    Yes, I've beendiagnosed w/ iGg4-RD.

    I was diagnosed about 3 months ago; started a course of prednisone (40 mg/day), but after about 4 weeks my dr. did not think I was improving as much as she'd like and my medication was switched to rituxin.

    I am now tapering off of prednisone, and have already completed my first infusion session of rituxin. Thankfully, I have had virtually no adverse side effects from the rituxin.

    If you'd like more details on my condition, symtoms, or treatment, just let me know.

    Thanks.

    Dennis

    • nick72107
      nick72107 dennis2314

      Posted

      Hello Dennis. My name is Nick, and I have just been diagnosed with IgG4 disease. Obviously this is a potential life changing diagnosis. I know a little about the combination therapy involved, but would really just appreciate the chance to chat things over. I realise you could be anywhere in the country - i am in Dorset - but that's where social media comes in I suppose!

      Hope to speak with you soon,

       

  • carlyone
    carlyone steve15859

    Posted

    I think that I may have the disease but am not sure. My igg4 test was double the standard. They think that my pancreatitis may be autoimmune. I have been researching igg4'disease and I also have a lot of other organ problems that seem to go with the disease, which would make some sense. I can't take steroids, so am at a loss as to what to do. What kind of doctor would be able to definitely diagnose it?

    • Sarge13
      Sarge13 carlyone

      Posted

      You definitely should see an immunologist / rheumatologist (sp.) right away.
    • deborah03121
      deborah03121 carlyone

      Posted

      Hi Carlyone 

      I have had on and off for a about a year that I know of. I actually could have been born with this. At that time I had a mass on the head of my pancreas and they did a biopsy and that is when they found I had elevated IGG 4.  Autoimmune pancreatitis was the diagnosis. I have never been a big drinker but have had lots of stomach issues my entire life and was always told I had IBS. Anyway they  put me on 40 mg of prednisone and tramadol  for several months and then had another endoscopic ultrasound with EGD. Everything looked normal. I then had another 3 months later and again everything was fine. Then last November I started feeling bad and knew something was wrong. They put me in the hospital as several of my blood tests were elevated - bile etc. plus I was nauseated and felt really sick. The Cat scan they did showed I had something like a plug blocking my bile duct. Several days later they were going to do another EGD and in the meantime they put me back on prednisone and very low fat food. When they did the EGD my bile duct was fine. Six weeks later I had another EGD and it too was fine. I am still on a small dose of 

      prednisone 5 mg and eat extremely low fat and absolutely no alcohol. Although i really want to be off of the prednisone it concerns me that my symptoms will return. I have a wonderful caring doctor in Denver and I now live in Florida. Eventually I will probably have him recommend someone in Tampa as every-time I need to see him I have to fly back. But as everyone knows it is very hard to find a good doctor. It has definitely changed my life but my hope is I will be able to control it with eating very low fat. If someone has this disease it would be nice to chat with you as I know it is a rare disorder. Deborah

  • 11Chris11
    11Chris11 steve15859

    Posted

    Hi Steve

    My name is Chris

    Yes I have Igg4 and RRF

    How's your treatment going?

    How are you going

    I've recently been diagnosed 😢

    • nick72107
      nick72107 11Chris11

      Posted

      Hello Chris,

      I have just been diagnosed with IgG4 disease - in salivary glands - now a body scan is needed to check elsewhere...

      I would really appreciate the chance to speak with you. If you are happy to do that please let me know.Thanks,

    • soumaya_01891
      soumaya_01891 nick72107

      Posted

      Hi Nick, just like you after a very long shot,I have just been diagnosed with igG4 in salivary gland. Now I was told I need to be referred to a rheumatologist. Have you had your body scan yet? I suffer from ME too. I would like to hear from others in the same position. And are steroids the only treatment available? I am so reluctant to start a course.
  • Jbug12
    Jbug12 steve15859

    Posted

    I was just tested for IgG4. I have Fibromyalgia, IBS, and Pancreatitus. Rheumatologist put me on trial steroids and a majority of pain went away. My doctor felt I had another Autoimmune disease that was more concentrated in my mid-area as I had a lot of pain in that area. I received a copy of the results, unfortunately I don't know how to read it. Did any of you have to fast before test? I was not told either way and had a coffee and peanut butter cookie. Any info you can share would be greatly appreciated.

    • 11Chris11
      11Chris11 Jbug12

      Posted

      I have had so many tests done - some I have to fast and others I don't.

      Best you call your doctor or pathologist for details

      Good luck

  • yvonne-hope
    yvonne-hope steve15859

    Posted

    Shuts found this site seeing last post was 2 years ago.  How are you doing,now?  I was diagnosed with igg-4 several years ago, my treatment has been prednisone and chemo drug Methotrexate ever since.  I’m doing so much better than before my diagnosis. still managing challenges with fatigue and other conditions ie. HBP, complications caused by inflammation.  I was able to taper down to 5 mg. of prednisone.  There is an new (extended release)prednisone called Rayos.  I favor the continuous effect of it over the other kind. 
    • robin01309
      robin01309 yvonne-hope

      Posted

      Hi Yvonne, just seen a rheumatologist last week who believes all of the issues I've been having (orbital myositis, aotoric valve and aneurysm) could all be from Igg4. I was on prednisone and methotrexate for my eye problem but have all the horrible prednisone side effects. How long did it take to get diagnosed and how long before all the issues go away? I'm having a lot of joint pain which is what sent me to the Dr been on 15 mg prednisone for about a week and still have joint pain. Looking forward to talking with someone with this disease.

    • nick72107
      nick72107 yvonne-hope

      Posted

      Hello Yvonne. I have just been diagnosed with IgG4 disease. I would really like the opportunity to talk with you about it. 
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