Hi, I'm not sure if there is anyone here that remembers me. I was active on this forum about
15 years ago and then checked in again more recently. I was treated for IBD with pentasa with great improvement. (that gi is now retired) My rheumatologist put me on Humira in 2009 because he was convinced my rheumatology problems were caused by IBD even if my new GI doctor disagreed. I had to go off Humira when I went on Medicare because it is covered under Part D so is unaffordable. I've was on Remicade, Symponi and now Cimzia.
I will try to be brief. I had an Abdominal/ Pelvic CT as part of a workup for microscopic hematuria (red blood cells in the urine seen only under the microscope) I've had it all my adult life and its been worked up twice. The last one about
2006 included a CT, all normal. This time the CT showed that my lung bases had several "pulmonary nodules" This is the sign of sarcoidosis (among other diseases like lung cancer) which 80 % of those with sarc have. I was then sent for a dedicated chest CT Scan which confirmed the nodules. (no lymph node enlargement) I was sent to a pulmonologist (to add to the long list of specialists I've seen) who didnt think it was cancer but had to be sure so ordered a PET Scan. This showed enlarged "hypermetabolic" hilar and mediastinal lymph nodes. So I was sent for a bronchoscopy for a biopsy and it came back showing non-caseating granulomas in the chest lymph nodes. There was another one in my subclavicular area and 2 in my liver. Good that I finally got a diagnosis but the problem is I have no idea who is going to treat me. My rheumatologist doesnt think my other problems are due to sarc, so he will only continue with Cimzia (which works, but not completely). He wants to follow it with imagining which would have to be PET Scans since nothing else showed the problem. My pulmonologist told me on the phone the first line of treatment is a corticosteroid. Will see if he wants to treat me since I dont have much in the way of pulmonary symptoms. My pcp says "that's a disease for the specialists". I have asked about
this disease for about
5 years but was told no, because I didnt have pulmonary symptoms. I may go to Boston or New York.
How does it relate to IBD? Sarc can cause granulomas in the bowel, especially the small intestine. My new GI insisted that IBD of the small bowel without involvement of the terminal ileum is rare. (but he never biopsed the terminal ileum). It may be that sarc affects other areas equally. whatever, pentasa was effective in that department.
So that's the end of one story and the beginning of the next.... proper treatment.
Never give up- My first lab abnormalities started in 1972. Symptoms appeared about
late 1980's. I have seen at least a dozen specialists, if not more, in the years since. Not one doctor ever mentioned "sarcoidosis" about
5 yrs ago I learned that a first cousin had died from complications from it so started asking questions. It m.ay be that the TNF blockers I have been on since 2009 have partially treated the sarc. The doctor that did the biopsy said that it was evident that the problem had been going on for a long time. Its similar to IBD in that it is caused by an abnormal immune reaction but different in that it can affect the entire body. I've read that it is often referred to as "the great mimicker". Thanks for reading. Chris
Post Edited (rootsmith) : 10/5/2021 11:50:59 AM (GMT-6)