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Jan 25, 2018 · Facial Swelling - no diagnosis after 2 years in Autoimmune Diseases

Definitely do not want to be pushed from department to department, that has been my life for the past 2 years. Been to Hematology also had a bone marrow biopsy thankfully clean. He thinks I have an autoimmune… 3 Rheumatologists say negative to that. Thanks for the names you provided it’s always helpful to have that information.

Jan 25, 2018 · Facial Swelling - no diagnosis after 2 years in Autoimmune Diseases

Will call them to see if a different department will be a better fit for me. I have been coincidentally weaning off of Omeprazole since the beginning of January, but probably a good idea to check with my Gastro doc also… Thanks!

Jan 24, 2018 · Facial Swelling - no diagnosis after 2 years in Autoimmune Diseases

This information is hard to ignore and the similarities are striking. Googling Omeprazole and facial swelling was a mind blower for me also! That never came up when I would google only facial swelling…. How fortunate that you had the sense to go to Mayo and have this testing! Having this testing done is imperative for me because the Rheumy I have been seeing has spoken to the fact that I have some kind of “gene mutation” that has caused this to happen. He also has referred to it as an immune deficiency, so I’m still a bit confused. I just did the calculations and I have actually been on a PPI for 15 years. I noticed back before this started that my face was starting to look bigger but it did not really resonate until 2015 when my glands where swollen too. I got a call from Mayo today and they want me to see an allergist/immunologist. When I called to make an appointment I believe they determined who I would see based on the ailment, mine being facial swelling. I’m wondering if that is the correct direction to go in or should I start somewhere else? I want to make the most of this visit because as many people do, I will be traveling there from another state. Regardless, I am going to stop taking the Omeprazole today. How long did it take for the swelling to subside after you stopped taking the PPI? Thanks so much again for providing me with this information if I am on the right track that gives me hope, if not it has given me encouragement that there are others that have dealt with tough heath issues and are persevering.

Jan 23, 2018 · Facial Swelling - no diagnosis after 2 years in Autoimmune Diseases

Wow, you are the first person that I have spoken to that has had these symptoms, I am taken aback. The only medication that I may have started at the time would be Allegra. I took Aciphex for over 10 years and switched to the generic which is Omeprazole during that time frame I believe. I have sent my medical records into Mayo and am waiting for a response about my next steps. Do you have any suggestions? How was your issue resolved after they discovered the reason?

Jan 23, 2018 · Facial Swelling - no diagnosis after 2 years in Autoimmune Diseases

Again thanks for your efforts, I am so appreciative of you taking the time to help me out. I have a lot of reading to do!

Jan 23, 2018 · Facial Swelling - no diagnosis after 2 years in Autoimmune Diseases

Hi John,
Thanks for sharing your thoughts and experience on prednisone with me. It’s scary how effective 10 mg is when it comes to alleviating the swelling in my face. Presently I am at 5mg daily and that just barely keeps it at bay. I’m going to try and contact the Mayo clinic for help as I don’t know where to go from here. I wish you the best with your PMR hoping you can be pain free soon!

Jan 23, 2018 · Facial Swelling - no diagnosis after 2 years in Autoimmune Diseases

Thanks for your response and to answer your questions yes I do have family members with Lupus and Connective Tissue Disorder. The doctors are well aware of that and I have been tested extensively for Lupus and IGG4 and other sub classes of that.
Interestingly I did move into a new home that we visit probably 2 times a month for about 8 days. We bought the home in October and this happened in January. Not sure if there is any relevance since previous to that we owned a home very close by the new one. I am going to look into coming to the Mayo clinic for help with this problem. Thanks again.