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Doctor says it's RA … I am not so sure

  • By tcphd

    I was told four days ago that I have Rheumatoid Arthritis. I am choosing to get a second opinion because I don’t have all of the symptoms that I read about and I am not comfortable starting DMARDS or steroids or anything until I am sure. I am seronegative, but have other CRP and ESR blood tests that are concerning to my doctor. I don’t have morning stiffness that is unbearable and I am not fatigued all the time. I don’t have “flu like” symptoms or a low grade fever. My VectraDA was moderate, but that is not supposed to be a diagnostic test. Although, I have no idea why all of those numbers would show up that way if it isn’t RA. My doc said my RA is in very early stages and I am very lucky because my x-rays and ultrasounds don’t show any damage yet, but they do show the beginning of “the red angry stuff” (he pointed to one of the pictures of RA in his office as he said that). According to one of the reports he sent home with me, I have “markedly decreased radoiocarpal joint space and soft tissue swelling” and mild – moderate synovial hypertrophy in my hand and wrist (he didn’t ultrasound other areas). When I have flare ups, they are symmetrical and I take a lot of Advil to deal with it and wait for it to go away (which at the longest has taken two and a half weeks). It isn’t pleasant, but I go to work, use heat and ice, and I continue to function. The flare ups have been more present since July of 2016, but there are days and even weeks at a time that I am totally fine!

    I get that the word “denial” applies here in obvious ways, but I do not want to start taking massive amounts of medication that could actually make me feel worse and have a possibility of serious side effects if I am not 100% sure that RA is what I am dealing with. And yes I realize that 100% surety is not always possible with RA. I have also read START TREATMENT EARLY in bold letters on many websites and in many pamphlets because it can prevent damage and increase quality of life, which is a HUGE deal if I am actually dealing with RA.

    So, my question is this: Is it possible that my rheumatologist is wrong? (oh, by the way, he did tell me he ruled out lupus, showgrens (sp?), gout, and other issues). He has 40 years of clinical experience and told me that he felt confident in his assessment and that I should be relieved that we caught it so early. He told me he didn’t feel any more testing was necessary and told me to feel free to get a second opinion when I was clearly unsure about his assessment. He said given everything he has reviewed, I could go 6 months to a year before I have any damage that occurs (I don’t know how he knows that?), so I have time to research and think about what I want to do.

    I am a very analytical person and I have been reading and researching almost non stop since my “Diagnosis Day”. I understand that everyone’s situation is different, but I am looking for opinions from a community that has “been there, done that”. Thank you for reading my post.

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  • By Tamara Haag Moderator

    Thanks so much for reaching out with your post! The diagnostic process and months after diagnosis are very stressful, so I’m glad that you found our site. I do hope that it proves useful to you.

    I am not a doctor, but rather a person who was diagnosed with RA 17 years ago (after years of misdiagnoses). I certainly understand your desire for a second opinion, and I encourage you to pursue that if you think it will bring you greater confidence in the diagnosis and/or clarity on what’s happening with you.

    Here’s what I have to offer as far as providing a “been there, done that” perspective. The symptoms you describe sound like RA. One of the most pronounced lessons I’ve learned since I started writing and moderating for this site are how incredibly varied people’s experiences with RA are. This online community has put me in touch with thousands of readers, and it is simply fascinating and flummoxing how different our experiences with the same disease can be. The medical treatments and/or alternative therapies that put one person in remission can do absolutely nothing for the next. Some people have such intense side effects to certain drugs that they can’t take them while others tolerate them without issue. The joints affected, and even the blood tests, vary greatly from one person to the next. For several years Health Union (the company that runs this website) has done a “RA in America” survey in which thousands of community members provide responses about their symptoms and treatment (https://rheumatoidarthritis.net/graphics/in-america-studies/ra-in-america-2015/), and it is intriguing how much people’s experiences vary. I’ve even seen this in my own family. My sister, who also has RA, and I not only share the same genetic makeup but also the same disease. Yet, a drug that works wonders for her did absolutely nothing for me.

    I have seronegative RA, so for years I “looked great on paper.” Then the Vectra test came out, and for the first time I had lab results that mirrored how I felt (I too had a Vectra score in the moderate range). However, x-rays (and later ultrasounds) did show indications of RA, which, along with my reported symptoms, led to my diagnosis. So when you say you have a moderate Vectra score, that adds credence to your doctor’s diagnosis.

    Also, although your morning stiffness is not unbearable, the fact that you have morning stiffness at all also points to RA. Morning stiffness is one of the hallmarks of RA, and often helps doctors differentiate RA from other ailments affecting joints.

    Additionally, the symmetry of impacted joints also points to RA, as do the flare ups of your condition. Doctors and researchers still have much to learn about why the immune system turns on the body in those with autoimmune conditions, but they have distinguished patterns common in people experiencing them, and flare ups are the expected pattern in someone with RA.

    While I have read many accounts of “flu-like symptoms” and low-grade fevers from people with RA, I have never experienced those myself. In fact, fevers are incredibly rare for me, even when I have infections. While those symptoms are not uncommon with RA, I would not say they are typical. Therefore, not having those symptoms doesn’t strike me as particularly significant.

    As far as fatigue, this is another symptom that varies greatly from person to person. Personally, I do experience bouts of fatigue, but it is very much in flux and “flares up” sometimes. I think most people who know me would describe me as fairly energetic, but there are times when the fatigue is severe. Other times, sometimes for long stretches, it’s a non-issue. And the flare ups of fatigue do not always go hand in hand with flare ups of pain. Sometimes I can be in a lot of pain but not have much fatigue, and other times I can have low levels of pain but extreme fatigue. I often describe RA as incredibly fickle, and this has certainly been the case for me when it comes to fatigue.

    These are the reasons why the symptoms you describe strike me as being consistent with an RA diagnosis. Nothing you said leads me to think that your doctor may be off. Again, I encourage you to get a second opinion if you think that will bring you peace of mind. And it’s always possible that another doctor may see something that your first doctor did not. That being said, your symptoms strike me, a person who has lived with RA for many years, as very familiar.

    Lastly, it is true that early treatment of RA can prevent non-reversible joint damage. RA is a degenerative disease, and yet treatment is so effective for some people (a minority of patients) that they actually go into medically-induced remission. For others of us, treatment greatly slows down the progression of the disease. As I’m sure you’ve seen in your research, RA when left untreated can cause serious damage that can cause deformity and/or necessitate surgery. Yet, treatment causes a drastic change in prognosis. I have had symptoms of RA for 30 years and have been treated for 17, and one would never know from looking at me that I have RA. Many people are surprised to learn that I have a disease when I disclose this to them.

    I am therefore a firm believer in medical treatment for RA. That being said, that does not mean that I do not have an ongoing assessment of the pros and cons of my treatment plan. As you say, the side effects of RA medications can be very concerning. I share these concerns, and I have been on medications that I transitioned off of due to the side effects. One of the frustrations of having RA is the constant balancing act of weighing the benefits of one’s treatment plan against the possible risks. Again, this is an ongoing issue. I always strive to be on the lowest amount of medication needed to control my symptoms. At times of high disease activity, that has meant being on five RA drugs. Currently, I am on two, and at my last rheumatologist appointment we decreased the dosage of one of them. Having an ongoing discussion with my trustworthy rheumatologist has allowed me to feel at peace with my ever-changing treatment plan. Finding a doctor who understands and validates your concerns about medications is crucially important in striking this balance.

    A final note: while pain is the symptom that most effectively gets our attention, swelling is actually the symptom that is the biggest indicator of risk of joint damage. I wrote about it in this article: https://rheumatoidarthritis.net/living/just-swell/. In that article, I describe times when I thought my symptoms were very mild, but my rheumatologist’s opinion differed because she places far more concern with swelling than I do. So in assessing your symptoms, it’s important to factor in swelling even more so than pain or fatigue.

    That may be more information than you needed, but as I mentioned I experienced several misdiagnoses before being diagnosed with RA and I remember vividly has confusing and scary that process was. Please continue to reach out any time you have questions, concerns, or experiences you’d like to share. We also welcome you to share the results of a second opinion, should you care to.

    Wishing you all the best,
    Tamara (Site Moderator)

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  • By tcphd

    Tamara –

    I can’t thank you enough for your thoughtful response! It was quite a welcome surprise to see your response come through as I am awake in the middle of the night ruminating on my new favorite topic, RA. Several things you said really hit home . . . 1. the varied experiences people have with RA
    2. not everyone experiencing flu like symptoms and fevers
    3. the possibility of medically-induced remission (I haven’t seen it described this way up to this point in my research, but that term helped several things click in my brain).
    4. early treatment of RA can prevent non-reversible joint damage (this is why I have to take this seriously, so a second opinion for me personally is vital!)
    5. swelling is actually the symptom that is the biggest indicator of risk of joint damage (never thought about it this way and it makes so much more sense!)

    This may indeed be the beginning of a very long journey for me and I can’t thank you enough for taking time to compose such a clear and helpful response. I am so grateful!

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  • By Tamara Haag Moderator

    I’m so glad to be able to be helpful during what I know must be a difficult time! As far as medically-induced remission, I wanted to include links to a few articles, in case you are interested.
    – This one refers to research: https://rheumatoidarthritis.net/treatment/effectiveness-of-ra-drugs/ (scroll down to the “How is Disease Remission Measured?” section at the end of the article).
    – This one provides some remission statistics from the RA in America survey I referenced: https://rheumatoidarthritis.net/living/the-varieties-of-experience/
    – And this one is about my own discussion with my rheumatologist about the possibility of remission: https://rheumatoidarthritis.net/living/holding-out-hope/

    Again, I do know what an overwhelming time the period of diagnosis and initial treatment can be, so please remember that we are here any time you have an issue you’d like to discuss with people who understand what you’re going through.

    Take Care,
    Tamara

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  • By Eebtool

    tcphd,
    A 2nd opinion is always a good thing.
    Don’t forget to discuss what this RA beast is doing to you at this time, both physically, mentally and emotionally with the loved ones close to you. Of course the level of information you share is up to you, but let them know what is happening.
    Having a support group close by can help on those frustrating days when things don’t seem to be making sense.
    I have found that even though one person in the family may dealing with RA, It can effect the whole family.

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  • By tcphd

    So, just a little update . . .I have a second opinion with another rheumatologist in two weeks and I am very grateful to have gotten an appointment so quickly.

    As far as believing I have RA, I have had some very distinct symptoms in the last three weeks that are making me think it may indeed be my new thing. I had never had noticeable swelling before and in the past three weeks, my right hand has swollen up three separate times. This current swelling has lasted for over 24 hours. Crazy thing is, even after icing my hand for 20 minutes, it stays pretty warm. I have definitely been having more stiffness in my hands in the morning. I have even had weird twinges of bilateral joint jaw pain. So, I am still toying with denial, but it seems like my body has decided to ramp things up a bit.

    I have been doing a lot of reading and really appreicate the resources this website (and others) provides. If I have to face this thing, it is good to know that there are people who are navigating it and thriving. Thanks for reading.

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  • By Tamara Haag Moderator

    I happen to be writing for the site right now, so I saw your update right away. Yes, that is a wonderful thing to get an evaluation with a rheumatologist with such a short wait time. Unfortunately there is a national shortage of rheumatologists, and appointments for new patients are sometimes not scheduled for three months or longer. If you have to be going through this scary, unsettling, nerve-wracking experience, at least you don’t have to wait that long for a second opinion.

    I’m sorry to hear that your symptoms are ramping up. Similar to your experience, when I am really swollen little reduces it short of an oral or sometimes even injected corticosteroid (luckily my treatment plan has prevented me from needing a steroid shot for a long while now).

    I am very glad that our site is providing you with some helpful information as you go through this. Obviously, if I had my wish RA would be cured for all of us, but since I can’t do that being part of a community of people who understand what I’m going through is a consolation.

    Please continue to post after your second opinion appointment or at any time you feel so inclined. In addition, if you are a Facebook user we also have a Facebook page that many members use to share experiences and ask questions. Some people prefer the Facebook platform and others prefer the website, and we are here for you on whichever you prefer!

    Wishing you comfort, answers, and effective treatment,
    Tamara (Site Moderator)

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  • By tcphd

    Update: I did see the “Second opinion” doc today and after reviewing everything and a long conversation, he actually said he didn’t think an RA diagnosis was appropriate at this time. I was kind of surprised, but so pleased that we had a conversation and I felt listened too! At this point, he is going with “inflammatory arthritis undifferentiated” and I am starting on Celebrex. I am going to see him a few more times as we monitor things and he said things may progress and we may see RA in the future, but as of now, not enough evidence pointing in that direction. Thanks for reading!

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    • By Tamara Haag Moderator

      Thanks so much for the update! I’m so glad you like your doctor! That makes a world of difference. There are over 200 different types of arthritis, so it is certainly possible that you have one of the other types. Having a doctor you trust and who listens is invaluable, so I’m really glad you found a doctor you can trust. I hope the celebrex helps! It will be great if that helps manage your symptoms. i welcome you to continue keeping us updated as you continue this “arthritis journey,” regardless of what type of arthritis it may be. I wish you all the best as well as comfort and relief, Tamara

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  • By Tamara Haag Moderator

    tcphd wrote:

    Tamara – I have delved back into some research about “inflammatory arthritis” and have a few questions. Celebrex was a wonder drug for two weeks, but I think I am on day two of another flare (after convincing and promising myself I was certainly not going to be entertaining any more flares!). I have read some of the latest research about Celebrex and it seems much safer than originally thought, but I don’t know a lot about how where it falls in the realm of “arthritis” drugs? I know it is an NSAID, but not “damage stopping”. Is this a drug people stay on for a long time, or is it possible to develop a tolerance to it?

    I read that 30% of people with inflammatory arthritis that is undifferentiated go on to develop RA, while another 30% go into a complete remission of symptoms, and another 30% stay in the undifferentiated realm. I know the expertise of this site is RA, but was wondering what resources might be available for those of us who are in this unsure realm still?

    Is there a direct way to e-mail you? Is that something you are comfortable with? I appreciate the communication we have had thus far and understand if the community is the best way to address questions. Thanks for entertaining a few more of my inquiries.

    ——————————–
    Hi Again,

    Thanks so much for staying in touch and reaching out with your questions! As far as Celebrex goes, it is definitely on the “lighter” side of the RA treatment spectrum. As you say, it is an NSAID, so it does reduce inflammation. Inflammation over time leads to joint deterioration, so reducing inflammation can thwart degeneration. That being said, some people find the biologic medications stop the symptoms from occurring in the first place more effectively than NSAIDs do.

    It is typical for a rheumatologist to start with an NSAID like Celebrex, then if that does not seem to be treating the symptoms adequately add a traditional DMARD (disease modifying anti-rheumatic drug) such as Methotrexate. If that doesn’t work, the rheumatologist will then often recommend a biologic DMARD. In addition to this being many specialists’ preferred treatment timeline, many insurance companies also require that a patient tries an NSAID before a traditional DMARD before a biologic drug. As biologic drugs are so very expensive, many insurance companies will not cover them if other drugs have not been tried first.

    Here are some articles that may be of interest to you:
    Celebrex: https://rheumatoidarthritis.net/treatment/nsaids/celebrex-celecoxib/
    Additional articles on Celebrex: https://rheumatoidarthritis.net/treatment/nsaids/celebrex-celecoxib/
    RA Treatment Overview: https://rheumatoidarthritis.net/treatment/ (this one has links that cover the entire spectrum of RA treatments)

    As far as a good resource for non-RA arthritis, the Arthritis Foundation (http://www.arthritis.org/) is an excellent resource and advocacy group that work to address all types of arthritis. Here’s their page on inflammatory arthritis: http://www.arthritis.org/about-arthritis/types/inflammatory-arthritis/.

    Please continue to reach out any time you have questions or want to share your treatment/diagnostic journey. Contacting me through this site (or by messaging through our site’s Facebook page: https://www.facebook.com/RheumatoidArthritisDotNet/?ref=bookmarks) is the best way to contact me. While multiple moderators check our forums and messages, if you direct a message to a specific moderator we pass that along to the specified moderator if one of us sees it before they do.

    I know this can all be confusing and overwhelming, but it sounds like you are contending with the process extremely well by finding a doctor you like and doing your research. I am confident your active role in your health will lead to the best possible outcome for your specific situation. And any time we can provide information and/or support, we are very happy to be of assistance as you navigate the issues of living with arthritis.

    Wishing you relief and all the best,
    Tamara

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