Sjogren’s Syndrome Flare

I was diagnosed with Sjogren’s Syndrome in 2001 by way of a salivary gland biopsy. Since then I have suffered the common and usual DRY; dry eyes, dry mouth, dry throat & nose, dry skin, dry lungs! All of which was treated symptomatically, including Lacriserts a year ago, and now Numoisyn Lozenges for saliva production (and they work better than anything else I have tried).

And of course, the fatigue and arthralgia. I do not know if Hereditary Hemochromatosis or Sjogren’s, or perhaps both (maybe that is why they are so bad) causes them.

So in past years, other than having the Lacriserts put in my eyes when needed, sucking on the Numoisyn, resting extra when needed, pacing my activities (the 50% rule!), and using a LOT of skin lotion, seeing the Rheumy once a year or so, I have pretty much ignored the diagnosis.

After all, I had bladder cancer, obesity, diabetes (and insulin pump!), hyperparathyroidism (interesting in that supposedly I have none!), hypothyroidism (because it has been removed), the 'new' RSD in my left leg, and poverty to deal with. You can see how Sjogren’s has slipped my mind.

At some time, I knew, that Sjogren’s could be a full blown systemic auto-immune disorder, but dismissed it, as the majority of folks only have the ‘DRY’ symptoms. I should not have done that!

On March 22, 2007, my Hematologist did a blood test for a bleeding disorder, as I very definitely have excess bleeding at times (as did my biological mother). A month later, I found that the test was extremely high, a result that happens with Sjogren’s (If you actually had that specific bleeding disorder, it would be very low, in fact, Sjogren’s can ‘mask’ it.). Therefore, I made an appointment with my Rheumatologist.

The Rheumatologist ordered a bunch of blood tests, and other stuff. Earlier this month I had a follow up appointment to get the results:

IGG - 11 (norm <6)
IGM = 8 (norm <6)
Complement C3 169 (norm 79 - 152)
C-Reactive Protein 1.2 (norm <.8)
Vit. D3 – LOW

No wonder I was feeling so poorly, but there was worse to come! I was given a prescription for Prednisone, told to increase my Vitamin D dose, and to come back for some repeat labs in three weeks. If the Prednisone helps, I will then be tried on Plaquenil.

It took me 4 days to get the prescription called in, ready, and to have a neighbor pick it up for me. So that by the time I started taking it last Monday morning, I had again spent most of the weekend in bed, wondering why I did not just die...

Today was my sixth day (of 15), of Prednisone, and it has helped. I am not back to my ‘normal’ but getting there. I have had the usual side effects: very jittery (which is much better today at only 10 mg.), a great increase in anxiety, some excess hunger the first few days (but now that seems to be gone also). What did surprise me; I had been warned that my blood sugars would go up and other than some post-meal spikes the first day or two that has not happened. My fasting blood sugars have gone DOWN. I will be interested to see what my Endo and Rheumy have to say about that...
The moral of this story? If you have an autoimmune disorder, do not ignore it! Had I visited my Rheumy regularly the past few years, I might not be so ill right again, now. And have to put my life on hold AGAIN...