# Hi! I'm Pixie! **URL:** \ **Category:** Greetings and Introductions\ **Created:** [April 8, 2018, 5:11pm UTC](https://discussion.livingwithpsoriaticarthritis.org/t/hi-im-pixie/8388 "2018-04-08T17:11:45Z")\ **Posts on this page:** 9\ **Page:** 1
**Author:** ![Pixie](https://sea1.discourse-cdn.com/flex019/user_avatar/discussion.livingwithpsoriaticarthritis.org/pixie/32/4528_2.png) [@Pixie](https://discussion.livingwithpsoriaticarthritis.org/u/Pixie)\ **Post date:** [April 8, 2018, 5:11pm UTC](https://discussion.livingwithpsoriaticarthritis.org/t/hi-im-pixie/8388/1 "2018-04-08T17:11:45Z")
Hello! I’m Pixie. I was diagnosed with ulcerative colitis more than 25 years ago. The diagnosis was later changed to Crohn’s disease. Doctor as the Mayo Clinic were unwilling to commit to a diagnosis for fear of litigation. I have been a patient of the head of Grastroenterology/Dean of Medicine for most of this journey—he believes I have Behcet’s disease. Some members of his team believe I have both Crohn’s and Behcet’s disease—a form of vasculitis. I have almost died from intestinal inflammation three times and have been very ill on many other occasions. I had been hospitalized with arthritis that left my knees the size of footballs. Aspirations provided no clues as to the cause of the swelling. At the same time, I developed pain in my hands that prevented me from driving. Over the years, I have had sores and scales in my ears and between my fingers. My medical team at the time diagnosed this as a Behcet’s rash. My Gastroenterologist enrolled me in a clinical trial of Remicade. I did well on this drug. My Rheumatologist halted my participation in the Remicade trial and instead prescribed Enbrel. My joint had never felt better. A year later, I was in intensive care with extreme bowel inflammation and infection—as it turns out, Enbrel does not act on the bowel. Remicade was restarted. This was a costly lesson for my Rheumatologist, who concluded I had Crohn’s and concluded that all joint pain, past and present, was a result of unresolved Crohn’s. The same Gastroenterologist treated my mom for PsA and was aware of the prevalence of extensive disease on my om’s side of the family. My Gastroenterologist replaced the Remicade with Simponi and Methotrexate. And a new Rheumatologist prescribed Otezla. This combination let to a significant improvement in all my symptoms. A year ago, I accepted a position with a college 300 km away from home. I lived in residence during the week. Around that time, I developed severe back pain—and thought the mattress was to blame. I also experienced a Crohn’s flare. My Gastroenterologist was on leave and the one I saw did not want to modify my treatment without first consulting my Gastro. A subsequent colonoscopy showed new scarring. I returned to the Rheumatologist to discuss my back issues, which were making it difficult to function. Having never examined me or run tests, he concluded that I had PsA and that nothing more could be done for me. Approxiately one month ago, I developed stiffness and incapacitating pain in my shoulders, feet, wrists, thumbs and buttocks and felt as though I had the flu. This is my first experience with shoulder and buttock pain. My blood work revealed elevated inflammatory markers. I will meet with a new Rheum in just under two weeks. I am hopeful that the use of ultrasound technology during the examination will reveal new insights. I have support from my wonderful husband and beloved cat, Sidney. Thank you for reading my lengthy post. I very much look forward to getting to know you over the coming months. Wishing you a wonderful Sunday! ---
**Author:** ![Cynthia](https://sea1.discourse-cdn.com/flex019/user_avatar/discussion.livingwithpsoriaticarthritis.org/cynthia/32/4357_2.png) [@Cynthia](https://discussion.livingwithpsoriaticarthritis.org/u/Cynthia)\ **Post date:** [April 8, 2018, 6:43pm UTC](https://discussion.livingwithpsoriaticarthritis.org/t/hi-im-pixie/8388/2 "2018-04-08T18:43:20Z")
Welcome! Wow… what a story! I’m so sorry you have and are going through all that! I don’t understand why doctor’s won’t give a diagnosis? Isn’t that their job? And how is there nothing more to be done when you have PsA?! I’m glad you said you’re meeting a new reumatologist! I hope they will be a good doctor! ---
**Author:** ![Jen75](https://avatars.discourse-cdn.com/v4/letter/j/6de8d8/32.png) [@Jen75](https://discussion.livingwithpsoriaticarthritis.org/u/Jen75)\ **Post date:** [April 8, 2018, 9:20pm UTC](https://discussion.livingwithpsoriaticarthritis.org/t/hi-im-pixie/8388/3 "2018-04-08T21:20:42Z")
Welcome Pixie, and glad you found us. The good news is that there are a number of biologics that both Crohn’s and PsA respond to. Remicade and Simponi are two of them, which is possibly why you did so well on those. Another couple are Humira and Cimzia, and there will be others too (I only really know about the ones subsidized in Australia, where I live). There are of course, also Crohn’s medications you could take with PsA medications (methotrexate being one, but others as well). Though I think Enbrel does have a number of examples of seeming to be coincident with huge Crohn’s flares after commencing Enbrel, so I’d think carefully and talk to your Rheumy thoroughly before trying that one again. I do so hope you get back to good response for both soon. Those inflammation backaches (probably from the Crohn’s in your case as it was the same time as a flare, but unfortunately which come with PsA too) are truly horrible! Let us know how the next Rheumy visit goes. ---
**Author:** ![Jen75](https://avatars.discourse-cdn.com/v4/letter/j/6de8d8/32.png) [@Jen75](https://discussion.livingwithpsoriaticarthritis.org/u/Jen75)\ **Post date:** [April 8, 2018, 9:40pm UTC](https://discussion.livingwithpsoriaticarthritis.org/t/hi-im-pixie/8388/4 "2018-04-08T21:40:00Z")
I’m not sure about Pixie’s situation, but it seems like gastroenterologists have a thing diagnosing about Crohn’s / UC. Another disease where diagnosis can easily take many years if the signs and symptoms are not perfectly aligned to the criteria. A bit like some of the Rheumy’s who insist they must see dactylitis before they will call PsA. ---
**Author:** ![Seenie](https://sea1.discourse-cdn.com/flex019/user_avatar/discussion.livingwithpsoriaticarthritis.org/seenie/32/4466_2.png) [@Seenie](https://discussion.livingwithpsoriaticarthritis.org/u/Seenie)\ **Post date:** [April 9, 2018, 1:17am UTC](https://discussion.livingwithpsoriaticarthritis.org/t/hi-im-pixie/8388/5 "2018-04-09T01:17:36Z")
Hi there Pixie! Welcome to our PsA clubhouse: it’s a nice place to be, even if PsA isn’t a nice thing to have. Yours is yet another diagnosis saga! We’ve had so many of those here. Nobody that we know has gone to the doctor feeling stiff, sore and unwell and had the doctor take a history and say “Well goodness me, you’ve got PsA.” We’ve all been through the diagnosis mill, some of us for months or years or even decades. After all that, the diagnosis is almost a relief, isn’t it? We’re really glad that you found us, and hope that you will be too. All the best to you Seenie ---
**Author:** ![Pixie](https://sea1.discourse-cdn.com/flex019/user_avatar/discussion.livingwithpsoriaticarthritis.org/pixie/32/4528_2.png) [@Pixie](https://discussion.livingwithpsoriaticarthritis.org/u/Pixie)\ **Post date:** [April 9, 2018, 2:30am UTC](https://discussion.livingwithpsoriaticarthritis.org/t/hi-im-pixie/8388/6 "2018-04-09T02:30:36Z")
Thank you for your welcoming words and your thoughtful responses. Cynthia, in terms of a diagnosis, there is widespread agreement that I have inflammation in the large bowel. The main differences include depth of the ulceration and biopsy results—granuloma or no-granuloma. The ulceration is consistent with both Crohn’s and some biopsies have granuloma, while others do not. As I’m being treated with Methotrexate and Simoni, both diseases are covered. But it gets tricky when it comes to PsA, for example. Behcet’s and PsA occur together rarely; while the occurrence of Crohn’s and PsA together is more common. And the second Rheumatologist did diagnose me with PsA, but didn’t feel anything more could be done. And when I looked at the diagnostic criteria for PsA, RA and AS, I realize I don’t neatly fit into any one category. . So, I have no idea how the new Rheumatologist will assemble the puzzle pieces. And depending on the doc, he may also decide that no action is the best action. (What a terrifying thought)! Jen45, I am currently taking 1 ml of Methotrexate weekly, 100 mg/1.0 ml every 21 days and Otezla. I can’t imagine why this combination is not holding the inflammation at bay. And I’m not sure if my large bowel is inflamed. Since my Gastroenterologist is on leave and will not be returning to practice, it is unlikely I will get an appointment with the new doc any time soon. Maybe the new Rheumatologist can help with that? My experience is as you’ve observed—docs don’t seem to want to make a diagnosis without clear alignment of signs and symptoms with diagnostic criteria. And Seenie, the diagnosis of autoimmune and autoinflammatory conditions does seem to be saga-like. While I appreciate the need for doctors to diagnosis with relative certainty, I also appreciate the suffering that imposes on patients. I feel diligence plays a role in some cases. Wishing everyone a great week! ---
**Author:** ![Grandma\_J](https://sea1.discourse-cdn.com/flex019/user_avatar/discussion.livingwithpsoriaticarthritis.org/grandma_j/32/1796_2.png) [@Grandma\_J](https://discussion.livingwithpsoriaticarthritis.org/u/Grandma_J)\ **Post date:** [April 10, 2018, 2:18am UTC](https://discussion.livingwithpsoriaticarthritis.org/t/hi-im-pixie/8388/7 "2018-04-10T02:18:26Z")
Hi Pixie! Wow, you’ve been through so much! I can’t imagine how much pain/cramping you must have from the Crohn’s and ulceration in your bowel! 😟 I hope things improve for you and life is more bearable! You seem like a positive person! ---
**Author:** ![Fatfinger](https://avatars.discourse-cdn.com/v4/letter/f/6de8d8/32.png) [@Fatfinger](https://discussion.livingwithpsoriaticarthritis.org/u/Fatfinger)\ **Post date:** [April 10, 2018, 3:51pm UTC](https://discussion.livingwithpsoriaticarthritis.org/t/hi-im-pixie/8388/8 "2018-04-10T15:51:00Z")
Aww Pixie, sounds terrible! I can kinda relate. I’ve had ischemic colitis 5 times. Painful, scary and embarrassing! Your gut says get that dead stuff outta here and your body suddenly forgets there are sphincters to control that sorta thing! I’ve had enough colonoscopies to last a lifetime! So sorry you are in so much pain. Hopefully the docs can get you straightened out. ---
**Author:** ![Pixie](https://sea1.discourse-cdn.com/flex019/user_avatar/discussion.livingwithpsoriaticarthritis.org/pixie/32/4528_2.png) [@Pixie](https://discussion.livingwithpsoriaticarthritis.org/u/Pixie)\ **Post date:** [April 11, 2018, 6:34pm UTC](https://discussion.livingwithpsoriaticarthritis.org/t/hi-im-pixie/8388/9 "2018-04-11T18:34:15Z")
Hi Grandma\_J. Thanks for your concern about my Crohn’s/Behcet’s—flares to come and go and I’ve only had a few near-death experiences : ) I try not to dwell, but there are days when I wonder, “How DID I get here?” My bigger issue relates to doctors and what I perceive as a decline in the quality of care. A Rheumatologist recently suggested that I start a high dose of prednisone—this in the context of longstanding osteonecrosis and recent hip replacement surgery. She then suggested I take an NSAID–a big no-no for people with bowel disease. Very unhelpful! I often wonder about doctor accountability. Hi Fatfinger—I love your handle! Ugh—colonoscopies—they are the ultimate indignity! Have you found a treatment that effectively addresses both of your conditions? If so, would you mind sharing what it is? Was diagnosis a lengthy process or relatively straightforward? Take care everyone!