I just saw my rheumatologist after a year. Very frustrating. He never examined me or ordered blood tests. I guess I used up my 15 minutes by asking questions. There are few rheumatologists here and the ones I have seen are not interested in Sjogren?s patients.
Is it really necessary to see a rheumatologist? My symptoms are mostly dryness-related and I am trying the usual treatments. I also see my primary care Dr. every 6 months.
I appreciate any thoughts on this.
A rheumatologist is the key doctor assigned to treat Sjogren's Syndrome as a systemic disease. If you want systemic treatments (Plaquenil, methotrexate, biologics, etc.) you will likely need a rheumatologist. In addition, a good rheumatologist should be coordinating with your medical team and taking the lead on your treatment. Unfortunately, many rheumatologists have a poor understanding of SS and are not interested in maintaining contacts with your medical team. In addition, our medical system has moved towards an HMO model that prioritizes efficiency, blood tests, and prescription medications rather than in-depth consultations to understand the specific manifestations of complex diseases like SS.
It sounds like you live in an area that has limited access to medical professionals. My experience has been that small, private clinics usually are able to provide the most personalized service. University research health systems can be good as well, but it really depends on the doctor. HMO systems generally offer the worst experiences.
While a PCP, dentist, and optometrist/ophthalmologist may be sufficient now, you may need more specialized help in the future. I would keep looking; if your SS progresses and you experience more extra-glandular symptoms, you will want a good rheumatologist. In addition, new treatments like Orencia are on the horizon, and will almost certainly require a rheumatologist's prescription, as most PCPs are reluctant to prescribe biologic drugs and other immunosuppressants.
Technically a rheumatologist is supposed to be the answer but I have seen 3 of them with little luck. One did diagnose the Sjogrens but was little use to me after that. All she did was check me for fibromyalgia and I had so many complaints and she told me I took too much of her time.
I have had good internists and ENT who referred me to an immunologist who has helped me the most. He diagnosed the myasthenia gravis, Hashimotos, autoimmune ear disease plus m immune deficiencies. Many of the Rheumatologists don't like to have to work so hard to figure things out and find treatments plus I have heard to too many of them who still think Sjogrens is all in the head and still drag their feet at prescribing Plaquenil. This has been my experience. Irish
WhatYouSjo - Thank you. You made some very good points. I will keep looking for another rheumatologist (probably outside this area) to have one lined up for any future issues.
Irish - I?m on my 4th rheumatologist and this one is the worst yet. I?ve come to the conclusion that the rheumatologists here do not like to deal with Sjogren?s and those that do prefer research over patient care. Glad you found good doctors.
I don't see one. I didn't like the one I saw. She was pretty useless.
My allergist/immunologist said in our nearby city of 150,000 people that we have one rheumy .. and this person mostly handles RA and Lupus, not SJS. So .. I'll pass.
A good rheumatologist..yes, a bad one, no. (sorry...i am a little burnt out from bad doctors :(
jazzlover & lorigacc - thanks for your replies. I was wondering if there were other Sjoggies managing without a rheumatologist. I just fired mine this morning. He really was the worst of the lot.
A good rheumy who gets Sjogren's is a joy. He or she may not be able to solve all your problems, but can reduce some of the symptoms. And listens and cares. I've had 3 good, 1 who claimed I didn't have Sjogren's, 1 so-so, and 1 horrible (fired him after first visit). It's worth trying again. Some people can do this with an immunologist, or a really knowledgeable PCP who is willing to take the time.
I have a habit for looking for the age of the person posting. It gives me an idea of where you "could" be with this disease. That being said, I wasn't dxed until I was 71. In my late 30's I was treated by an orthopedist. Remember: that was early 80s. Years later, in my late 50s, early 60's I sought out a Rheumatologist (again, the decade of the 90s) for extensive aches and fatigue--and was dxed with the disease du jour. After treatment (mostly pain meds) for "fibromyalgia" and learning there was not a definitive test for it, I stopped seeing her and denied the medication. I went another 10 years when the dryness set in to the degree it eventually does. I never asked a doctor about that. I did see an ENT for sialadenitis for 3 years, and treated for same. I did see an ophthalmologist for what I called "bleeding" eyes (of course you know they weren't) for about 4 years---dxed "allergic conjunctivitis). Again, no suggestion or comment about the absence of fluid on my eyeballs.
I tell you that as when a PA suggested I be tested for SjS, I searched the local SJS group for "the" most knowledgeable rheumy in our area. It's an area north of Houston of about 1/2 million people. I saw him and he didn't laugh in my face but did say he thought I had sicca. btw: this would have pleased me as I thought I'd receive some type of Rx to help me. He reluctantly did the blood draw. THEN the dx. THEN the meds.
Agreeing with the above: a GOOD rheumy---which in turn can be found thru SjS groups throughout America. Bottom line: sometimes it takes years before the disease progresses enough to result in tests being positive. I've learned that from reading posts on this forum.
Good luck. Oh...btw: if a rheumy does not listen to you, exhibits any type of behavior you don't like, go to someone else. He/she might be great. However, it's the connection YOU have with said doctor that counts. Again, have learned that here. It's why there are different responses to your query.
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