Third opinion update

I wrote previously about my musical diagnoses and the toll that took on my emotional health and ability to accept a diagnosis.  To sum it up briefly, I went from a diagnosis of Rheumatoid Arthritis (RA) for 2 years to a diagnosis of Sjogren’s Syndrom with possible RA and Lupus overlap for the last 6-7 months.

The way Sjogren’s was presented to me, and the first thing you read about it when you search online is that the white blood cells attacking your moisture producing glands leads to dry eyes and dry mouth.  In fact, there’s a lot of information about how it’s often a “secondary” disease – it occurs often in people with other autoimmune diseases…like a bonus add-on but not the main concern.  I was convinced I had it the minute I heard about it (based on years of those symptoms) and the blood work and ocular testing confirmed it.  But it seemed like an add-on.

My second rheumatologist (“Dr. B”) never once presented the idea to me that it may be my ONLY diagnosis – that it could be responsible for all the symptoms and complications I was having.  And honestly, RA and Lupus sounded much more severe and I had a greater awareness of them and their seriousness, so they were what I focused on.  The doctor treated Sjogren’s as an add-on, so I did as well.

I went for my initial visit with a third rheumatologist at KU Med three weeks ago (“Dr. C”) and that was the first time that someone proposed to me that it very well could be my only diagnosis.  That it can go much deeper than just dry eyes and dry mouth.  Since that time I’ve researched it further.  Up to this point the superficial research I’d done provided information on what it is and that basically the only thing you can do for it is treat the symptoms – treat the dry eyes and dry mouth.  It seemed pretty straight-forward and far less concerning than what was going on with the rest of my body, so I looked at the info quickly and moved on.

But once I began thinking of it as possibly my ONLY diagnosis, I began to read further about Sjogren’s in the last few weeks.  Like many autoimmune diseases, it can be systemic.  That means that it not only affects the moisture-producing glands but also a wide variety of symptoms in the body.

I went for my follow-up appointment at KU Med yesterday with Dr. C.  The extensive blood work and X-rays showed him (and me) that I don’t have RA.  I don’t have Lupus.  I have Sjogren’s – and at least for now (people with one autoimmune are at increased risk of developing others over the course of their lives) – that’s it.

As I was leaving the appointment, I texted my husband to let him know I was done and headed home.  He asked what the news was and I told him Sjogren’s was my only diagnosis.  He replied “if you don’t have RA then what’s wrong with your hands?”  This is exactly the response I had along with just about everyone else that I’ve tried to explain Sjogren’s to over the last few months.

I told him Sjogren’s was a systemic disease and that it can cause all these other complications.  Later that night when we were talking he said he looked it up online while I was on my way home and at first it just said the info about dry eyes and mouth.  Then he noticed that there was a link to more pages of information after that first initial page and when he clicked on that then he began to see where it described the systemic issues of Sjogren’s.

The American College of Rheumatology (the association the doctors that work in this area belong to) adds this to the bottom of it’s description of what Sjogren’s is:

“Complications in other parts of the body can occur. Pain and stiffness in the joints with mild swelling may occur in some patients, even in those without rheumatoid arthritis or lupus. Rashes on the arms and legs related to inflammation in small blood vessels (vasculitis) and inflammation in the lungs, liver, and kidney may occur rarely and be difficult to diagnose. Numbness, tingling, and weakness also have been described in some patients.” (quoted from here)

They go on to say this later on the page:

“A vast majority of patients with Sjögren’s syndrome remain very healthy, without any serious complications. Patients should know that they face an increased risk for infections in and around the eyes and an increased risk for dental problems due to the long-term decrease in tears and saliva.

  • Rarely, patients may have complications related to inflammation in other body systems, including:
  • Joint and muscle pain with fatigue
  • Lung problems that may mimic pneumonia
  • Abnormal liver and kidney function tests
  • Skin rashes related to inflammation of small blood vessels
  • Neurologic problems causing weakness and numbness”

So I guess I’m not in the “vast majority” – I’m the “Rare patient” category.  Many other informational sites on Sjogren’s talk about the symptoms everyone with it has (dry eyes, mouth, etc.) versus the “series” or “rare” symptoms.  Wohoo…I’m rare!  Ummm…I’d rather be normal right about now!

I’m much more prepared to accept this singular diagnosis than I was for the last 6 months – because I finally had a doctor present it to me a possibility rather than an add-on that causes the obnoxious but not life-changing symptoms of dry eyes and dry mouth.

OK, so great…that’s my diagnosis.  I’m on board now.  How do we treat it (other than eye drops and the medication I’m on to increase saliva production – which actually works wonderfully…the bright shining treatment out of all I’ve experienced thus far)?  An anti-malarial drug called hydroxychlouroquine (brand name is “Plaquenil”) is used to treat the systemic aspects of Sjogren’s.

I was on Plaquenil for 4 months in 2011 and I’m currently in my 9th month of taking it in 2013.  Nothing.  Nada.  No relief of my systemic symptoms.  In fact I believe they’re getting worse over time.  What’s next?  Dr. C is going to research the findings of the efficacy of treating more severe Sjogren’s with other drugs that are being studied for it’s use (they’re currently used for other autoimmune diseases but haven’t become a main treatment option for Sjogren’s yet).  This approach is much preferred over Dr. B’s approach of saying “If you don’t think it’s working for you then stop taking it and come back in 3 months.  You’ll know if had been working for you in 6 weeks or so of being off of it.”

Dr. C and I talked for quite a while about my neuropathy (I talked about it in a post a few days ago).  The numbness, weakness, clumsiness, “hands not doing what my brain tells them to do” issues that concern me the most.  He’s sending me for neurological tests to document these things in a way that insurance will allow us to seek treatments that they’d otherwise fight to deal with it.  Apparently insurance also thinks of Sjogren’s as only a eye/mouth issue.  I have those tests on Monday and then go back to KU Med again next month to determine what treatments we can try to help alleviate the joint pain, fatigue and neuropathy.

So where I stand now is: one diagnosis of Sjogren’s that is manifesting itself systemically (and apparently severely compared with most) within me, on meds that aren’t working without any really clear-cut choices to try next, and headed for another round of testing to document what I already know is going on with me.

An invisible disease that no one has heard of, that on the surface appears annoying but not debilitating (yet very much is) and has only one common treatment that apparently doesn’t work for me.

And a feeling like life will never feel normal again.

6 thoughts on “Third opinion update

  1. Kelly, you write well. So much resonates with me.You describe the challenges of pain and fatigue, musical diagnoses, monitoring and communicating symptoms, coping with scary medications, losing fine motor skills, living with uncertainty very clearly.The similarities–even being told I had rheumatoid disease, then rheumatoid disease with secondary Sjogren’s Syndrome, then primary Sjogren’s with inflammatory arthritis–are uncanny.

    I cannot articulate it as well, but you are not alone. Thank you for sharing, and good luck!

  2. HI Kelly,

    I just read all of your posts. We are very similar. I am on the Sjogren’s forum
    and saw your post that you had started your own blog. It is very good. Nice
    job!! I have Graves, Addison’s, and all the joys that Sjogren’s brings 🙁

    My rheumy has diagnosed me with Sjogren’s inflammatory arthritis in my
    hands and feet. I have tried prednisone, cymbalta, sulfaselzadine and
    methotrexate. Nothing. Nada. No help with the pain, swelling, inflammation etc.

    We are going to try Humira. I am scared. I am going to let her know this week
    if I want to try it. I am still thinking. Leaning towards yes, but scared.

    We shall see. Take care Kelly,

    Bobbie

    1. I was on humira for about 6 months. I’d be happy to answer any questions you might have about it from a patient’s perspective if it would help!
      I have it on my list of “posts to write” to talk about my experiences with all the various drugs I’ve taken!

  3. Hi there! Great blog and seems you had a similar long road to diagnosis as I did. I was so frustrated last year but I finally was diagnosed in February this year. Now to figure out the mess of drugs they want me to try….ugh.

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