When i get really sick i might lose a few pounds but i haven’t had anything drastic at all.
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I haven’t yet – have you had any of those symptoms? Or ever had all the symptoms of a flare with no evidence of the disease being active? I hate taking prednisone but it’s the only thing that helps when things get really bad so i was hoping if it’s actually something different we might be able to control or treat it better.
Thank you John! I’m just confused and worried at this point since my most recent GI doc said he didn’t see any evidence of Crohn’s but I still have all these symptoms. I would love to hear from any of these crohnie’s and see if they’ve ever had any experiences like that!
I looked that up and it does sound similar – I just don’t have any skin ulcerations and it sounds like my rashes aren’t anywhere near as bad as yours. When it flares up I have a hard time just sitting at a desk for a full day because everything just hurts and I feel almost like I have the flu. What kind of things are they doing to check for Lupus? I’m so sorry you are having to go through this!
I don’t know if it’s also useful- I’m 30 now, 5’2, about 140 lbs, and I live in Montana. I’m of German/Welsh/Italian descent mostly. My Grandfather may have had an autoimmune disease and my mother was diagnosed with sero-negative RA. I didn’t start having all these symptoms until I was 22 and since have had eye and mouth dryness also, which I forgot to mention.
7 years ago, I was diagnosed with Crohn’s disease. I was diagnosed based on symptoms, what the doctor saw in my colonoscopy, and inflammation markers on the Prometheus IBD inflammation marker test. My biopsies came back negative and we didn’t do any other tests. We tried a few medications but only prednisone seemed to work. I went into remission when I became pregnant and weaned off prednisone slowly. Pretty much my whole life I have had diarrhea and nausea easily, kidney stones, and recurrent mouth ulcers that are very bad. When I was diagnosed I also had joint and all over pain, painful bloating, lower right quadrant pain, vomiting, rashes, severe fatigue, hair and nail breakage, and ran a fever constantly. I still have all these symptoms intermittently. A couple years ago I became very ill again. The new GI doctor was unsure of my diagnosis because he did not see anything on my current colonoscopy or CT. He decided to try an IBS medication as well as some Crohn’s meds. Again only the prednisone worked. I eventually weaned off all the meds and am trying medical cannabis (cbd) and trying lifestyle changes. However, I really want to figure out what is wrong. When I get run down or stressed and everything gets worse. My skin even hurts some days. I have joint pain in large and small joints. I get swollen lymph nodes (I even have one in my elbow right now) and I get a lot of muscle and joint pain especially on my left side- leg, hip, shoulder, neck, arm, fingers. I get rashes on my face, hands, and body but not a butterfly type rash. I get sores in my mouth and throat so bad it’s hard to talk and eat. I run low grade fevers easily and get diarrhea. The doctor ordered multiple urinalysis tests to see if any of my abdomen pain at the time was from kidney stones, but every time I just had high protein and nothing else. My WBC and CRP are normally high. They did ultrasounds to check my ovaries and uterus too. I feel anxious not knowing what is wrong with me. My question is – Could I have had that inflammation from another autoimmune disease and have been misdiagnosed? I keep finding similarities with my symptoms and lupus. Should I ask my doctor for some kind of testing for lupus or something else? Does anyone else have something that sounds similar?