Secondary Sjogren’s Syndrome and Rheumatoid Arthritis: a Primary Problem

Sjogren’s syndrome: have you seen the eye doc yet?

sjogrens syndrome updateWhen I wrote my first RA Warrior post on Sjogren’s syndrome in 2009, I wasn’t sure whether I’d ever be diagnosed with it. But I thought it was important to cover on the blog. I had a fun idea for illustrating the pronunciation of the name so my daughter Mary Khris created the “show grins” original character for us.

Reading research articles for that post, I learned that about half of Sjogren’s syndrome patients are Rheumatoid Disease patients, having “Secondary Sjogren’s.” I say was because new Sjogren’s guidelines seem to change that. The new Sjogren’s syndrome criteria  may eliminate that distinction between Primary and Secondary Sjogren’s.

I’m not sure yet how that matters. What always matters to me is that people can get proper treatment. Which brings me back to my own Sjogren’s diagnosis.

My first rheumatologist, Dr. KBC, asked me at every appointment whether I’d seen the eye doc yet. I would ask why and be told it’s just a good idea with RA. I didn’t want any more doctors because RA was consuming a large portion of my life and my schedule already.

Eventually, I went to the eye doc. But he was one of the “you-don’t-look-sick-why-are-you-bothering-me” (YDLSWAUBM) docs. We paid the bills, but he acted like he was doing the rheum doc a big favor to see me. He mumbled something about my eyes being dry and learning to deal with eye drops… but told me to come back if it I have vision trouble.

I left there determined to never go back. I told Dr. KBC to check that off my list and went back to focusing on overcoming RA to do as much as I could.

Persistent Sjogren’s syndrome won’t be ignored

But my eyes didn’t care if I was busy or in pain or tired of doctors. My eyes got drier and I ignored them more. Eventually, I was squinting all the time and wearing sunglasses, even indoors in the evening. Light was painful.

Aware of how common Sjogren’s is with RA. Aware of its symptoms. I still had no clue what was wrong with me.

I ended up doing exactly what I’d warned about in that blog post: Bigger problems allowed me to easily ignore eye symptoms such as itchiness, grittiness, and sensitivity to light. How do I know if my eyes are dry; I’ve bigger fish to fry?

When I could no longer see well enough to read or drive, I had to stop ignoring my eyes. It had been about two years since I’d seen the YDLSWAUBM doc. The office is across the street from my pediatricians so I walked in one day and asked for an appointment with someone else. The women at the desk laughed, “We understand.”

Soon I saw Dr. U who was everything patients want in a doctor. My eyes were carefully examined and my condition was discussed intelligently. The surface of the eyes was wrinkled from extended periods of dryness, causing the glare whenever light hit the surface of my eye. We explored management and long-term treatments, from Omega-3 supplements to Restasis. And he gave me prescriptions for glasses and sample eye drops.

Over several visits, Dr. U wrote “symptoms consistent with Sjogren’s” on my chart, even sending notes to my other doctors because he was unsure whose job it was to actually diagnose me. Meanwhile I admitted to myself that my difficulty swallowing food was probably related to my dry peeling lips.

My Sjogren’s story has more chapters. Dr. U retired. We see Dr. P now. I have permanent plugs in my tear ducts. They are not as comfortable as the temporary ones were, which Dr. P pointed out after they were inserted. I might have chosen differently and I’m not sure how long I can put up with the sore right eye. It may depend on how successfully my RA pain distracts me.

Do you have Sjogren’s syndrome symptoms? If you’ve been diagnosed, how were you diagnosed? If you also have RA, do you receive any additional treatment for the Sjogren’s?

For more on Sjogren’s and its new diagnosis criteria, read this recent post.

Recommended reading

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

32 thoughts on “Secondary Sjogren’s Syndrome and Rheumatoid Arthritis: a Primary Problem

  • April 23, 2012 at 6:36 am
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    I have an appointment with the eye doc tomorrow to investigate my dry eyes. It also took me a couple of months before I “remembered” to mention it to my Rheumy. Sometimes I think I need a VIP parking spot at the local hospital! LOL

    Reply
  • April 23, 2012 at 6:50 am
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    I also have Sjögrens. Was diagnosed last by 3 seperate opthamologists (long story–1st one referred me to the other 2 for 2nd opinions on 2 different eye problems). I also have buried optic drusen and mild glaucoma.

    They have been pushing me to get the tear duct plugs but I’m squeamish about my eyes. Hearing that you’re having issues with them makes me even less inclined to get them. I am on Restasis, 3g Omega 3’s, lubricating ointment and a pressure reducing drop. I too have the peeling lips, choke often when swallowing and horrendous dry mouth. I can no longer drive at night and my peripheral and central vision have some significant blind spots; the light sensitivity is painful. I also have severely dry skin all over my body. It’s really gross. My rheumatologist is hopeful my upcoming switch to Biologics will help with the Sjögrens as well as the RAD. We shall see I suppose.

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    • April 23, 2012 at 7:38 am
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      Steph, the left eye is better than the right. Anyway, they have a couple kinds of temporary plugs that are disolve so they go down into the duct fully and you cant feel them like you can w/these. In case you decide you need them.

      oh – and good luck w/ the Biologic!

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  • April 23, 2012 at 7:40 am
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    I was also diagnosed with this early on. And also given the plug option, the restasis drop option. I didn’t do either. Since I have so many drug allergies and was in the throws of many at the time I was diagnosed I didn’t want ANY new drug on my plate. I avoided the plugs because I was just chicken 🙂 I am happy to report that after years with that disease it does wane off at times. But I always wear sunglasses outside, I have natural tear drops in my purse at all times, I carry a water bottle with me almost always and so far so good. I do need another eye doc followup but so far my quest here in my new town is growing old in finding docs that I love. It does get depressing at times to be honest trying to find good doctors. But I did find one I love…my endo doc 🙂

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  • April 23, 2012 at 8:21 am
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    Just to show how contrary Sjogrens can be, my husband has really bad R.A and can’t tolerate the drugs used to control it. Yet its ME, his carer, who has the Sjogrens.

    Its sods law, the time in my life when I need the energy to care for others, I have fatigue symptoms that put me back in bed only 4 hours after waking. I have a cough that makes me sound like a 60 a day smoker, when I have never smoked, all because of the dry moth and throat.

    I will need a carer myself within 10 years.

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  • April 23, 2012 at 8:31 am
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    I was diagnosed with Sjogrens about 5 years after my RAD diagnosis. Dry mouth. Dry eyes. My DR put me on EVOXAC 30 mg, which I take 3 times a day. In addition I also take over the counter eye drops ( Refresh Optive) . This combination has helped me 🙂 Not cured me, just helped me :-).

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  • April 23, 2012 at 9:39 am
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    I have Sjogrens also: Restasis helps tremendously, and if I forget to use the drops,, my eyes get red and yellow “plaques” on them. I also have GERD, and have to take Dexilant, which has helped iwith mouth/throat issues as well. Biotene mouthwash, toothpaste, and frequent use of lozenges helps the dry mouth. Chapstick is essential! And brushing teeth gently but frequently is necessary. I understand about all the docs and all the meds, but when I slack off, I and everyone that depends on me suffers…

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  • April 23, 2012 at 9:50 am
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    Kelly,
    I was diagnosed with Sjogrens by my rheumy who had me go for a lip biopsy. I was referred to a special type of dentist (told we only have two in our entire province) who did the lip biopsy and had me spit into a specimen container (read urine collection container minus the urine..lol) for ten minutes. The test results matched my symptoms and diagnosis was made. Everything I use to treat is purchased OTC …glycerin swabs are the best for dry mouth when drinking isn’t an option.

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  • April 23, 2012 at 9:57 am
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    I was diagnosed with Sjogren’s 8 years after diagnosed with RA. I wonder if it is primary Sjogrens because the extreme dry eyes came before the RA. It was the trouble swallowing, dry throat, and worse brain fog and fatigue that brought my attention to Sjogren’s. My doctor wasn’t concerned. I wanted a Dx. She gave me some things to try, which helped some (Restasis had failed years before). Next follow up she said yes, I think you have Sjogrens. No more concerns on her part. I still had and have many questions and am scheduling appt with ophthalmologist who can confirm. Apparently my rheumy sees many Sjogren’s patients with minimal symptoms. She told me about the plugs and options, but seemed very simplistic about it. To me it would be a huge deal to get that stuff done.

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  • April 23, 2012 at 10:07 am
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    I used the plugs for years, kept falling out, even tried upper and lower and still needed drops. Just use Restasis now, works great!!!

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  • April 23, 2012 at 12:09 pm
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    I have RA dx about 5 years ago. About 4 years ago, I started getting really dry eyes. Constant stinging and burning. It felt like I had gotten shampoo in my eyes but it non-stop. I went to the optholomogist and she rx restasis and temp plugs. The plugs gave me so relief but after a couple weeks they would either slide out or disolve. I too was sitting in a dark room with only the tv on and wearing dark sunglasses. It was so painful. I was using moisturizing eye drops every hour. Finally the dr suggested that my tear ducts be permenantly cautized. At first I was hesitant but when you live with pain after a while it seems like a good idea. I had them done in Oct 2012. Best thing I ever did. I have just enough tears and what I have stay on my eyeballs and do not get drained away thru the tear ducts. It was a great solution for me but may not be for everybody. Glad I got my nerve up and did it.

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  • April 23, 2012 at 5:12 pm
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    I was diagnosed with secondary Sjogren’s on my first appointment with the Rheumatologist. I had no idea what it was or why it was important. On my first visit to the rheumy, he did extensive testing, including complement testing. At the time, I didn’t realize what a great rheumatologist I had. He really did not explain things to me, and at the time of diagnosis, I felt like I was consoling him. NOW, I realize why he seemed so sad to tell me about the diagnosis’. 7 years later, my vision is much worse, and has forced me to purchase a larger television, multiple eye drops daily, and I nearly did not pass my vision test for my driver’s license. I’ve had my salivary glands become painfully swollen, and I hold Sjogren’s responsible for bouts of vasculitis. Still, sjogren’s takes a back seat because the RA is painful and PAIN gets my attention. Unfortunately, Sjogren’s deserves attention, because it’s easy to ignore progression. Because there are so many co-morbidities associated with RA, it would be awesome if the rheumy’s nurse would act as case manager to educate patients and arrange necessary appointments for patients. Additionally, I believe that once diagnosis is made, I think the rheumy needs to explain the importance of a multi-disciplinary approach to managing the disease, and arrange for consults with OT, PT, Ophthalmology, etc. I have learned that dealing with RAD and Sjogren’s is a full time job in itself, though many RAD patients still work full time (I still wonder how we do this sometimes). Just as Sjogren’s takes a backseat to RA in treatment, RA takes a backseat to work and family obligations. As you pointed out Kelly, who wants to go to yet another doctor? Just because we are busy or have other issues to deal with, the diseases continue to progress.

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    • April 23, 2012 at 5:35 pm
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      Great points, Belinda. Thanks for taking the time. I kind of feel like you’re reading my mind about what’s coming up on the blog. 🙂

      Unfortunately, it’s also true that most rheum docs don’t even have a nurse. And I’m afraid many of them don’t realize the systemic issues that are common and mostly judge by hand x-rays and blood lab tests. I credit my first one with at least telling me I ought to see any ophth doc. I recently met my first patient ever who was given cardiology and pulmonary tests as a matter of course with diagnosis. She does go to a famously excellent center, but it was still a good sign that someone is doing it.

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  • April 23, 2012 at 7:09 pm
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    I have had RA for about 15 years now and watched my aunt and mother die from RA. I also had dry eyes before the RA was “officially” diagnosed – sero negative until a newer test came out and then sero positive. I was wearing hard contact lenses and they were becoming extremely uncomfortable. My eye doctor switched me to soft lenses and that helped, then she did a test for dry eye, came back positive and she had me see an MD for plugs. Have had them in for many years and they help a lot. One plug came out and I was referred to another MD to replace it and he told me that he inserted the biggest size and if that came out it would have to stay out and gave me an RX for Restasis. Didn’t use it, so if things do not work out maybe give it a go. The ENT has an estrogen and lanolin compound mixed at the pharmacy for my dry nose. I use lots and lots of lotion and have found Gold Bond works pretty good. I also used the biotene products in addition to pilocarpine. I am on the maximum dosage (the dosage they give cancer patients and it helps.

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    • April 23, 2012 at 8:10 pm
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      Thanks for sharing those details. I know it will help someone else, Chris.

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  • April 23, 2012 at 9:52 pm
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    I’ve had rheumatoid for 34 years, and was diagnosed with Sjogrens about 6 yrs. ago. When I mentioned dry eyes to my rheumy he said “yeah, Sjogren’s, use eye drops”. No big deal. Then I got a corneal cyst–painful! Luckily I have a great opthalmologist who has treated me over the years. We’ve tried everything. one of the best was lacrisert–little silicone things that sit in the lower eye and keep it moist. Rx only and expensive but worth it. Somehow, when I had cataracts removed (years of steroids) my eyes cleared up a lot. I now get by with just drops. I have to always have water or something to drink with me, and I have dry skin as well.

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  • April 23, 2012 at 11:13 pm
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    This is my second year living with RA Diagnosis and I have had dry, gritty itchy eyes which my eye doctor treated with Antihistamine drops. Over the past year I would choke on my well chewed food or on broth from soup or on my own saliva and jokingly tell my husband “I think my swallower is broken”. I carry water with me in my purse or have to stop at a store to buy some if I forgot to carry it with me at the mall because my mouth is so dry all the time but I ignored it figuring I was reacting to medications. When my eyes got so bad I finally went back and I asked the eye doctor if there was any possibilty that his diagnoses of Acute Inflammatory Conjunctivitis could be related to my RA or could it be a reaction to the medication? He changed his diagnosis after hearing all my symptoms and wrote “possible Sjogren’s Syndrome” and he told me I should tell my Rheumatologist. I had never heard of this but in researching on your sight I recognized a lot of what I am feeling but I had never put it all together. When I went and shared these findings with my Rheumy his response was “everyone has dry eyes” his nurse was there and he said she has dry eyes too but doesn’t have Sjogren’s.” I have to admit that I felt a little ashamed for asking – like maybe I was overreacting to normal discomfort. I did ask him if there was a blood test for Sjogren’s could he include it next time which he did but he said the eye doctor should be the one to diagnose Sjogren’s. I skipped my last appointment with the rheumy (just had the blood draw) after this episode but I know I have to go back in a few weeks. Could you tell me:
    Who should I look to to receive the diagnosis?
    Do I really need a diagnosis or can I just do the Systane drops 3 to 6 times a day and deal with the symptoms myself?
    Sorry this got so long but I would love to hear your advise.

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  • April 23, 2012 at 11:20 pm
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    My eyes are dry, but not horrible. What’s bad is my blurry vision. I feel like my eyes are just not as “strong”.
    When I try to focus, I feel like things are jumpy.

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  • April 24, 2012 at 12:44 am
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    My dx for SS went like this:
    me: So I probably have sjogren’s, since I was dx’d with dry eyes and I constantly drink water (or coke), and almost choke at night
    him: probably, but we’d use the same meds either way

    Saw eye dr the other day, still need to get the retsasis filled (tomorrow), but I told him about Clearwater Sunshine’s experience and he said it made sense. She can explain it better than I can, so I’ll ping her on fb.

    But, same situation as you, ignored it till I couldn’t anymore. My opthomologist (sp) is good, doesn’t see any damage at all, but definitely agrees that SS can affect your vision, even if HE doesn’t see any problems.

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  • April 24, 2012 at 8:34 am
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    My RD asked me from the first visit if my eyes or mouth were dry. I had the trouble swallowing dry food for at least a few years and never thought anything of it as it was gradual. I wore contacts and have had dry eyes forever but always associated that with the contacts. About 6 months ago I couldn’t stand to wear the contacts anymore so I’m now in glasses all the time, and my mouth had gotten constantly bone dry causing horrible breath. Told my RD about this and he gave me pilocarpine which helped a lot with the dry mouth. I also have an opthimologist appointment every 6 months since starting on plaquinel, my last visit I told them about the sjogrens and was almost shocked by the reaction. The Opthimologist said “I’m so sorry” with the most horrified expression. It was weird but nice to know that I was taken seriously.

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  • April 24, 2012 at 10:05 pm
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    I asked my rheumatologist about the dry eyes and mouth after I had read a lot online about Sjogrens and seen an optometrist. He said that a lot of his patients have Sjogrens. That was after 20 years with RA.

    Now I take Salagen, use Restasis and other eye drops and gels and also have the plugs in my lower tear ducts. I had them in for years and recently they were removed and after 6 months without I got a new set. I think after 4 to 5 years they like to replace them.

    All of these things help. I take Humira and I feel better with it. It may be coincidence but the choking and swallowing isues are much improved

    Annette

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  • April 25, 2012 at 12:57 am
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    I was diagnosed with Sjogren’s last year. I also have RA. I probably had Sjogren’s a lot longer now that I am more educated on the symptoms. I was told that I could not wear my contacts because I had severe dry eye many years ago. Last year I went to the eye doctor when my eye lids began sticking to my eyes. Turns out I don’t produce tears, at all. I am really lazy about the eye drops and I have to get better about it. I tried the temporary plugs but they were so painful that I could not wait for them to dissolve. I always carry a water bottle with me since my dry mouth occurs at the most inopportune times. Don’t get me started on the dry lips. I thought I might have Sjogren’s and I went to the doctor and asked if they could check me out. My doctor’s are great and they listen to me.

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  • April 25, 2012 at 9:12 am
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    I loved this article! I was recently diagnosed with secondary Sjogren’s, after a visit to my eye doctor confirmed extremely dry corneas in both eyes. I had been dealing with the dry eye issue for 4 months prior, and the dry mouth issue started to become really bad about 2 months ago. I go to the eye doctor on at least a six month basis due to being on Plaquenil for the RA. I’m fortunate to have a very good eye doctor who herself suffers from auto-immune disease and fully understands how difficult living day to day can be. I also live with the effects of fibromyalgia and working has become almost impossible, since I work as a cashier and must monitor a screen as I scan products. I’m provided a break since I’m not allowed to eat or drink anything while working but it can be difficult and my eyes are burning so bad that my vision starts to blur within 30 minutes. I use Restasis and also Fresh Kote drops. I no longer am able to drive at night due to occasional sudden onset of blurred vision. It was very scary the first time it happened and it was that incident that actually got me to the eye doctor and on a course of treatment along with a confirmed diagnosis of Sjogren’s.

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  • April 26, 2012 at 4:49 pm
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    I have symptoms of both Sjogrens and RA, albeit relatively mild compared to what others experience. Looking back, my first symptom was that my eyes started watering sometimes. Then other times my mouth was dry and no amount of water drinking helped. Been having pain in my hands since October, and joints are slowly getting bigger. My first big joint pain episode was last January, when my left shoulder hurt so much I couldn’t use my arm and it stayed that way for a month. My eye doc and dentist think my symptoms are most likely due to Sjogrens, but my rheumy is hard to convince. Seronegative on all counts so far, so I’m awaiting a lip biopsy….and there have been multiple hiccups along the way. My rheumy keeps dismissing me, but after a big fight I am on plaquenil which helps tremendously. I’m stuck with her until August, since that’s the earliest a new rheumy can see me.

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  • April 27, 2012 at 1:34 pm
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    Some of my illness classifications include Osteoarthritis, Fibromyalgia, Psoriatic Arthritis and Chronic Fatigue Syndrome. For (at least!) the past 5 years I have struggled with extremely dry eyes a d dry mouth. My vision gets blurry, sore and sensitive to light. Dry mouth has led to tooth decay, difficulty swallowing and talking and a constant “tin” taste. I haven’t earned the S diagnosis because the blood test is negative for Sjogrens. Oh, I forgot to include a recent borderline Glaucoma RX.
    Who should I “target ” to help me get this rx? I have a “cast of thousands ” of physicians providing my medical care. I’ve spoken to rheumatologist, ophthalmilogist, primary care, pain care and gastroenterologist about these symptoms.
    Does anyone have any ideas on the next quest direction?

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  • April 29, 2012 at 3:24 pm
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    I was diagnosed with JRA when I was two, over 40 years ago. I don’t ever remember NOT having RA. So, for me, this is my normal. I have a hard timing acknowledging the small changes as important. At my last, appointment my Dr. mentioned Sjogren’s. I had no idea what it was. I looked some things up, but I must say this article and your comments make complete sense to me. My JRA is mild/moderate and I think my Sjogren’s symptoms are as well. My normal is never leaving the house without sunglasses, avoiding driving at night, having to have something to drink while I’m teaching because my throat gets scratchy and my voice gets hoarse. It never occurred to me that these could be an underlying condition…just my version of normal. My Dr doesn’t even know about these. He was concerned about a flare up I had. I thought I had the mumps…even made the primary care dr test me! The glands on my face and neck were swollen and painful. felt like I have been smiling for days. Still have trouble with painful jaw and glands. I don’t have an official diagnosis of Sjogren’s, but I do have something to take back to the eye dr abd my rheumalogist next month.
    THANKS!!!

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  • June 9, 2012 at 2:19 pm
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    Kelly,
    I have posted before on your blog about Sjogren’s and RA, and my experiences. Recently, I began having some pretty serious ocular manifestations such as pain with moving my eyes, visual distortion, vertigo, and nausea. I thought the vertigo and nausea were related to ear and so had a lot of tests; E Cog, auditory tests, CT right brain, carotid ultrasound, MRI brain; all of which is pending. Yesterday I was told by my rheumatologist over the phone when making an appointment, that I should go straight to the ER, that the symptoms I was describing were indicative of a medical emergency. I prepared to go to the ER with dread. I’ve never had a good experience there, and feel that unless you have a limb hanging or are having a heart attack or definite stroke, the ER is of little use.
    I did a little research on the internet before I left for the ER. I was seen by Nurse Practitioner who was very nice. I received lab work, CT of brain. After 5 hours, with ambulances pouring in the back door, I graciously explained that I would be better off at home. My symptoms had been going on for 3 days now. It was obvious that the simplest thing to do is to give me steroids which I have at home. Apparently time is pretty critical if this is optic neuritis. I learned a lot over the past couple of days doing my research on my ocular involvement. When my search brought me to a page with “Cotton Balls on the Retina”, I stopped dead in my tracks. Ten years before I was diagnosed with RA and Sjogren’s, I went to the eye doctor for some vague symptoms I was experiencing after having the flu. He freaked me out, telling me that I was HIV positive (without labs or anything). He explained that I would never have these symptoms and the Cotton balls on my retina without having an autoimmune disease such as HIV. I immediately went to the Health Department to had HIV testing, which of course was negative. I had received from him 2 weeks worth of treatment with steroids and anti-malarial drugs before I decided he was a quack, and went to another eye doctor, telling him nothing about the “quack’s” diagnosis. The other doctor thoroughly examined my eyes and said I had nothing more than “a congenital pit, that he would call nothing but cute”. I threw my hands up and was forever leary of doctors, so I trudged on whether I had pain/symptoms or not.
    I was diagnosed 7 years later when the symptoms were so bad that I could not get myself out of bed and could not walk. In my research, I have learned that the Cotton Wool Spots are a classic early sign of autoimmune disease. Now, I’m sitting here with symptoms of optic neuritis, waiting for results/prognosis. That original doctor was right to be going off on a tangent, but he was horribly misguided. I can’t help but be a little angry with his bullying behavior when I asked questions.

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  • June 23, 2012 at 12:15 am
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    Has anyone heard of Cogan’s syndrome? Cogan’s syndrome is a rare, rheumatic disease characterized by inflammation of the ears and eyes. Cogan’s syndrome can lead to vision difficulty, hearing loss and dizziness. The condition may also be associated with blood-vessel inflammation (called vasculitis) in other areas of the body that can cause major organ damage or, in a small number of cases, even death. It most commonly occurs in a person’s 20s or 30s. The cause is not known. However, one theory is that it is an autoimmune disorder in which the body’s immune system mistakenly attacks tissue in the eye and ear.
    The most common symptoms of Cogan’s syndrome include:

    Red, painful, light-sensitive eyes or blurred vision
    Hearing loss, which may become profound and permanent
    Vertigo (a sensation of the room spinning; may be called dizziness)
    Poor balance
    Nausea, vomiting
    Fever, fatigue, weight loss
    A doctor diagnoses Cogan’s syndrome after finding the typical combination of problems associated with this disease in the eye and inner ear. Until both the eye and the inner ear are affected, the diagnosis may be uncertain. Either area may be affected first, or the eye and ear problems may develop at the same time.

    As per my previous posts, I started having problems first with my ears (pulsatile tinnitus, muffled hearing, dizziness). Then came the eyes, true vertigo, decreased visual acuity, swelling of the eyeballs, feeling like my eyeballs are bouncing in my head, temporal discomfort. Waiting to see neuro-ophthalmologist at the end of next week. Wish me luck.

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  • October 21, 2013 at 7:41 pm
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    A year ago July, when I finally saw the rheumy after a four month wait, she examined and questioned me and said, “The good news is that you don’t have RA. You probably have Sjogren’s.” After my blood work came back with a strongly positive anti-CCP, she said, “You have RA, and maybe Sjogren’s, too.” Then I spent several months in a foreign country, and saw a rheumatologist there to see what he would have to say. He said, “You don’t have RA. Maybe you have Sjogren’s.” Aaarggghh!!! Anyway, after careful consideration of the matter and the factors that went into each opinion, I think that the first rheumy is right. I am on Plaquenil, which has helped a lot, and is appropriate for either disease, so that’s good. Eventually I will know for sure, I guess! Something different that has helped my dryness symptoms tremendously: DHEA. I take them in sublingual drops, low dose. I imagine that pills would also work. I have no more problems with dry mouth. My eyes still get dry sometimes, usually after a joint-pain flare and with fatigue, but not nearly as severe as when I don’t have the DHEA. I hope this helps someone.

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  • November 2, 2014 at 3:47 pm
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    I can so relate to the majority of all the comments. I have sjogrens & have have RA for 29 yrs. my eyes have bothered me for so many yrs. I started seeing distortions in the road when I drove at night. I saw the opthamologist on my own & had cataracts in both eyes. I thought i would be better after having those removed but my eyes are more dry now ! I read later that your eyes get more dry from any surgery. It was so hard for them to do any eye tests they had to keep stopping & adding eye drops. I have used restasis for yrs & got cauterized with the permanent plugs. They are still very dry & my right one burns most of the time. I have the extreme dry mouth drink water all day & still dry. I get hoarse also have done that for yrs. talking on the phone kills me. I can’t get my grown daughters to understand that. It is so hard for them to get that concept they think I am not being supportive ! I choke too, have trouble swallowing, have Gerd (dexilant) helps $95 copay per month. My skin is about peeling off my face. I get rashes on my skin too don’t know if that’s related.. Try to tell myself every day how grateful I am for all my blessings. I am but only others that share all these same issues understand how hard it is to keep looking on the bright side. So glad I found this blog. I have been following now for a few yrs. Blessings to all.

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  • December 15, 2014 at 8:45 am
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    Hi Kelly – Thank you so much for your website. I was diagnosed with RA almost three years ago, but I am pretty nervous about the various pharmaceuticals so I wouldn’t go to a rheumatologist. I’ve been trying to treat the RA with herbs and doing pretty well, but now it is coming in with a vengeance. I think I would have to go on an all raw diet to go to the next step, but I can’t quite get there yet. Then about two months ago my PCP diagnosed me with Sjogrens Syndrome which is not really a surprise in retrospect, but I’m not too thrilled. I have my first real RA physician appointment this week and my eye doctor appointment next. It is helpful to know what others go through so I know that what I am experiencing is “RA normal”… ha ha. I hope everyone has a wonderful Christmas. Carol

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  • August 13, 2015 at 11:23 am
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    I also suffer greatly with severe dry eye/mouth/nasal passages, etc. The way I survive is with PROSE lenses and plasma tears. So I wear saline solution inside my lenses during awake hours – helps TREMENDOUSLY. Cannot imagine life without them. As far as the plasma tears, I donate my own blood, the blood bank spins the plasma out and makes for me small vials of frozen plasma tears to drop in my eyes several times a day. Brings tremendous relief. Again, these 2 items enable me to survive. I have been through everything else there is. Nothing else compares.

    http://www.bostonsight.org/PROSE-treatment/About-PROSE

    Reply

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    Welcome to RA Warrior!

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    Thanks for visiting this unique site full of information and encouragement to fight Rheumatoid Disease. You'll find hope, humor, and a helpful online community. I'm Kelly & I'll be glad to show you around if you'll click right here.

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