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

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)

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!

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

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.