Inflammatory Arthritis

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Inflammatory Arthritis
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    Mini bio

    At the age of 44, I have lived the life of a much older person. My story began at age 18, when you begin your adult life...in my case, my IBD life. Some of you may have similar experiences and this may be a safe space to share.

    A diagnosis of Ulcerative Colitis in 1996, caused a cycle of flare and remission for four years. During that time I finished high school, completed my college program, worked full time, moved into my own place for the first time, met my future husband, and attempted to live life without my diagnosis. All that changed in 2000, my health deteriorated and a total colectomy and pouch were created over the course of 3 surgeries and 4 admissions. Doctors back then were hopeful that I would be able to have surgery to reverse the pouch and function almost "normally". My body rejected this idea and I went through about 6 more surgeries to repair fistulas. Ultimately leading to a life of a pouch for the next 18 years. Those years were somewhat uneventful, a few more surgeries, but I was mostly by definition, "healthy" as the colon was completely removed.

    Made some life changes that were healthy, such as divorce, moved to a different city, and settled on another surgery (the BCIR in 2018). Most of the people living with IBD have not had this surgery and so I become a bit of a unicorn to anyone working with me to get an X-ray, MRI, and CT scan. It's an explanation that only leads to more questions. I hear, "So you have an ostomy?" and "Do you have a bag?" and "How do you go to the bathroom?" and "Why do you need those supplies?" After the surgery, I developed pouchitis and changed my eating habits. This cleared the reoccurring inflammation after a couple months but didn't help with the next blow to my life. My dad committed suicide and that threw my body into a trauma wreck. I developed another diagnosis, Inflammatory Arthritis that was severe. Being in full body pain for about 3 months until I could find the right medication to provide some relief, Humira.

    Now I am working with two diagnoses that cause inflammation. In addition, I was diagnosis with anemia and depression. Over the next 3 years I was in pain due to a body that was attacking itself. I developed a belly abscess in January 2020 and admitted for 3 days. In the surgery follow up appts. I was pushed and poked and developed abdominal pain that wouldn't go away that was severe. This pain carried with me until September 2021 when a new health team diagnosed me with Crohn's. Are you keeping count, Ulcerative Colitis, Crohn's, Depression, Arthritis, and Anemia. In order to treatment the Crohn's I had to stop Humira, start Remicade and prednisone. I have finished my loading dose of Remicade and am now being switched to Inflectra (insurance forcing the change). I am taking Methotrexate via injection due to the pills causing nausea and was able to stop the Prednisone.

    At present, my belly is uncomfortable most days, on a prednisone taper, and face swelling.

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    What are your early stage migraine symptoms?

    Sometimes I find it hard to tell whether I'm getting a migraine or a headache. I get headaches related to my inflammatory arthritis sometimes and so far the only difference I can spot between migraines and headaches is the light and sound sensitivity with migraines. That can take a little while to kick in though as the migraine ramps up. Now, I take zolmytriptan for migraines and it works best if taken as early as possible, but doesn't work if taken too often. This puts me in a tricky spot sometimes as to whether to take it or not. Is it a migraine starting or just a headache? 🤷‍♀️ So I'm wondering, what symptoms do you get in the early stages of a migraine?

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    New to Group

    <p>New to Group</p>
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    Help with fatigue?

    Has anyone found something that helps with the chronic fatigue? I have fibro and inflammatory arthritis and I’m just exhausted all the time. I could sleep for a month straight and still be tired.
    #Fibromyalgia

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    autoimmune disease

    <p>autoimmune disease</p>
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    AskMe: We Asked an Expert Your Questions About Rheumatoid Arthritis

    Rheumatoid arthritis (RA) is a complex condition, which can make the ways it manifests feel unexpected or confusing.  Although many people believe that rheumatoid arthritis only affects the joints, it can also affect other organs, and the ways that symptoms present can vary widely.  We spoke with Dr. Daniel Solomon, MD, MPH, and he answered questions from our Mighty community members about rheumatoid arthritis.  Here are answers to some of your most pressing RA questions. Responses have been lightly edited for clarity. Q: How does rheumatoid arthritis affect a patient’s kidneys and/or pancreas? Solomon: In patients with severe or untreated rheumatoid arthritis, there can be a buildup of amyloid, which can impact the kidneys and in rare cases, the pancreas. Some medications for RA, such as NSAIDs, can impact the kidneys. However, pancreatic involvement with RA is very rare. Q: What is the relationship between weather and increased rheumatoid arthritis symptoms? Solomon: Many patients describe that arthritis symptoms are worse during certain types of weather, but research on this topic has not been conclusive. Q: How long should a patient give a new rheumatoid arthritis medication before deeming it helpful or unhelpful? Solomon: It depends on the medicine. This is a perfect question for the prescribing clinician as it varies greatly based on the prescriber’s treatment plan. Q: How does rheumatoid arthritis progress or worsen as a person ages? Is it different if they have other comorbid conditions? Solomon: Inflammatory arthritis that is not completely treated will cause cartilage degeneration — the same process that leads to osteoarthritis (OA). Thus, many patients with RA will develop OA later on in life. RA can also impact other parts of the body, such as the lungs and the blood vessels in the heart and brain. Many studies find that RA has an impact on lung function and … cardiac function [in] the long-term. Thank you to Daniel Solomon, MD, MPH Matthew H. Liang Distinguished Chair Chief, Section of Clinical Sciences Professor of Medicine Division of Rheumatology Division of Pharmacoepidemiology Brigham and Women’s Hospital Harvard Medical School Editor in Chief, Arthritis & Rheumatology If you’re living with rheumatoid arthritis and want to connect with others with similar experiences, join a community on The Mighty: Living With RA Spoonie Life Hacks

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    Inflammatory arthritis/seronegative rheumatoid with no swelling or visible damage, but a moderate Vectra score?

    I was just diagnosed with inflammatory arthritis (leaning toward seronegative rheumatoid arthritis but the doctor wasn't sure) after five years of all sorts of tests coming back normal. (I am also diagnosed with fibromyalgia but always suspected there was something else going on.) Aside from my symptoms and family history of RA (my dad has it), my doctor seemed to also rely heavily on the results of the Vectra test, which showed moderate disease progression. After doing research I'd been under the impression that the Vectra test is not supposed to be used for diagnosis, just if you already have confirmed RA. But I'm not a doctor, and this rheumatologist came highly recommended.

    I guess I'm just still processing this diagnosis and wondering if anyone else out there has been diagnosed with any sort of inflammatory arthritis in a similar way, with normal bloodwork and imaging but a positive Vectra, or just on symptoms and family history. I don't have swelling at all and didn't have any visible damage in an ultrasound of my hands last year.

    It's weird because I've suspected all along that I had an autoimmune disease, and as much as I don't want to have one, I feel sort of like I've been let into this exclusive club where I now get to try medications to manage my illness. But I also can't shake the doubts and the worry that maybe I don't have this at all. It's hard to balance my cautious optimism that maybe things are starting to work out toward a real treatment plan, with my doubts and fears that I'm headed down the wrong path. #InflammatoryArthritis #RheumatoidArthritis

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    #AskMe : How does RA progress or worsen as a person ages?

    <p><a class="tm-topic-link mighty-topic" title="#AskMe" href="/topic/askme/" data-id="5bc4f46d95775e00ad460618" data-name="#AskMe" aria-label="hashtag #AskMe">#AskMe</a>  : How does <a href="https://themighty.com/topic/rheumatoid-arthritis/?label=RA" class="tm-embed-link  tm-autolink health-map" data-id="5b23ceb200553f33fe99b889" data-name="RA" title="RA" target="_blank">RA</a> progress or worsen as a person ages?</p>