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Old 12-06-2011, 08:55 AM #1
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This is not enough information. The results should list a specific number of foci present in a 4 mm sq area (focus=aggregate of 50 or more lymphocytes, histiocytes and plasma cells). You should get a copy of the results.

"Chronic inflammation" is certainly a clue that something is going on, but it could be caused by many things...its the 'infiltration of lymphocytes' that makes it a Sjogren's diagnosis. The ENT's office may not have read the entire result to you (so typical for them to summarize on their own), so get a copy.

Glad you're seeing a rheumy.
I saw the rheumy yesterday and my results aren't stated in the form you indicated. The results state that there is interstitial mild chronic inflammation includes a few plasma cells and while the inflammatory changes are not specific, they could be seen in the setting of Sjogrens if the clinical circumstances are appropriate and it further states that several lobules of involvement are noted. They want to prescribe plaquenil but only after my opthalmologist okays it. So I guess I have it.
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Old 12-06-2011, 12:19 PM #2
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There are different grading systems. The one I was referencing is the Greenspan scale which is used at Hopkins (where I had mine done) and many others (but obviously not all places). As long as it looks for infiltrates & inflammation and the findings correlate to your symptoms, which it did.

Yes, you should have a baseline eye exam (to include color blindness and field of vision checks) by an ophthalmologist before starting Plaquenil...and every six months after. The damage to the eyes from Plaquenil is extremely rare, but none the less important to be checked for regularly.

Plaquenil is not a quick fix. It can (and usually) takes up to 3-6 months before you notice any improvement.

So glad you're getting some answers. You may find other unusual symptoms have an answer now. There are many problems associated with Sjogren's. They may address your PN differently now with this diagnosis.
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Old 12-06-2011, 05:56 PM #3
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There are different grading systems. The one I was referencing is the Greenspan scale which is used at Hopkins (where I had mine done) and many others (but obviously not all places). As long as it looks for infiltrates & inflammation and the findings correlate to your symptoms, which it did.

Yes, you should have a baseline eye exam (to include color blindness and field of vision checks) by an ophthalmologist before starting Plaquenil...and every six months after. The damage to the eyes from Plaquenil is extremely rare, but none the less important to be checked for regularly.

Plaquenil is not a quick fix. It can (and usually) takes up to 3-6 months before you notice any improvement.

So glad you're getting some answers. You may find other unusual symptoms have an answer now. There are many problems associated with Sjogren's. They may address your PN differently now with this diagnosis.

I am curious about that. I asked alot of questions about other problems I have and their relation to this and I didn't get any firm answers. I'll be seeing my neurologist in a couple of weeks and I'm curious to see what he says about it as well as my other doctors. I was seeing my opthalmologist every 4 months prior to this last time when he was finally comfortable seeing me in 6 months since using Restasis is keeping the blepharitis at bay. I also have pigmentary dispersion syndrome in both eyes which they have been following for a long time so they are being extra cautious over my eyes and thats fine with me. I have enough to deal with already.
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Old 12-06-2011, 08:10 PM #4
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I have a vitreous detachment. It happened a year ago, and my vision never returned to normal. It's slightly better than when this happened.

Frankly, I am wondering why they are not prescribing more Boston Scleral Lenses....my thought is to look into those. Insurance will be an issue and the cost is also an obstacle.

I couldn't use Plaquenil....I tried, but I itched to high heaven. Sigh.
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Old 12-06-2011, 10:38 PM #5
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I have a vitreous detachment. It happened a year ago, and my vision never returned to normal. It's slightly better than when this happened.

Frankly, I am wondering why they are not prescribing more Boston Scleral Lenses....my thought is to look into those. Insurance will be an issue and the cost is also an obstacle.

I couldn't use Plaquenil....I tried, but I itched to high heaven. Sigh.
Ouch on the vitreous detachment. I have vitreous degeneration. I wonder if its the same thing. I have a long history of intolerance to meds and I worry that I may not tolerate plaquenil also. My list of medical allergies is growing and I now wonder if thats related to this in some way as well. I'm not familiar with the Boston scleral lenses, what are they for?
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Old 12-07-2011, 08:11 AM #6
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Speak to the doctor about the Plaquenil (after approved from the ophthalmologist) and starting it slowly. The typical dose is 400mg (total for the day). Some start with 50-100mg BID and work their way up. I too have numerous drug reactions, but am able to tolerate the Plaquenil.
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Old 12-07-2011, 08:25 AM #7
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Speak to the doctor about the Plaquenil (after approved from the ophthalmologist) and starting it slowly. The typical dose is 400mg (total for the day). Some start with 50-100mg BID and work their way up. I too have numerous drug reactions, but am able to tolerate the Plaquenil.
I will do that. I always prefer to start new meds slowly so I'm pretty sure they won't object to it. Thanks for the excellent advice.
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