Because of Venus Williams

[soycoffee]

I've been declining gradually for about 10 months, not thinking of Sjogren's. Then i learned that Venus Williams dropped out of the U.S. Open because she had been diagnosed with SjS, and would undergo treatment.

Now I suspected Sjogren's in 1996, when I rapidly lost most of my teeth, due to dry mouth. But all the information was that Sjogren's involved dry eye and dry mouth, and treatment with over-the-counter meds. What was the point of getting a diagnosis?

But if, in September 2011, there is any form of treatment, then it's important to get diagnosed.

The tough part is that I also started a major flare  -- I would call it a storm -- of symptoms and problems. First, bones and muscles, not the symmetrical pain of fibromyalgia, but intense pain in my left hip and sacroiliac joint, with slight echoes in the right hip.  Then eyes suddenly tearing, tears running down my cheeks, not an allergy. Two days later, I had Bell's Palsy in my right eye, went to the hospital ER fearing a stroke. Lots of blood draws later, an overnight stay in the Transition Unit, and I got released with a lot of eye meds and no instruction on what to do with them.

The aches did continue until I got started on Prednisone. At that point, my blood had been drawn for blood tests, but not analyzed. I began to tell people "Prednisone is the cure (for the systemic disease I always thought I had). I don't know what the disease is. I loved prednisone. For about six days I felt normal, went outdoors, walked everywhere, lost weight -- loved it. Then I had to taper off. I did it by dropping 5 mg daily until done. That was last week. Today,  "I just don't feel like doing anything!" Widespread fibro type pain, that sucks away the energy.

Is the flare still going on?

Anyway, thanks to Venus Williams going public with Sjogren's, I knew what was happening to me, and how the underlying disease model tied together a number of things that the dx of Fibromyalgia did not. BUT my new rheumatologist thinks the fatigue is not Sjogren's, but fibro. If it gets better with prednisone, does it matter?

[A66eyroad]

Amen to that, and prayers to you! (and Venus!)  I think it's a shame they haven't followed up with stories about her treatment and how she's been feeling.

I was saddened to read of the toll your illness has been taking on you. It's true what they say about if you have your health, you have everything. Welcome to this forum -- you'll find a wealth of information using the search box, and even more if you have specific questions. This is a smart and compassionate bunch!   

Do you have a family doctor or a rheumetologist who can help you with your meds? Did I understand correctly that you had blood drawn but no labwork done?   

[Joe S.]

Welcome to the forum, soycoffee. There is a topic on this forum on pain management that may be helpful.  "Spoon Theory" can help with your understanding of things. Some of us have posted what we are taking in our signatures.

[soycoffee]

To clarify what I wrote earlier:

The aches did continue until I got started on Prednisone. At that point, my blood had been drawn for blood tests, but not analyzed. I began to tell people "Prednisone is the cure (for the systemic disease I always thought I had). I don't know what the disease is. I loved prednisone. For about six days I felt normal, went outdoors, walked everywhere, lost weight -- loved it. Then I had to taper off. I did it by dropping 5 mg daily until done. That was last week. Today,  "I just don't feel like doing anything!" Widespread fibro type pain, that sucks away the energy.

I had had 9 vials of blood drawn for 17 or so tests. The full results were not back when I developed Bell's Palsy -- right face and eye droop -- APOFSJS = "also part of Sjogren's syndrome." I was then hospitalized for the Bell's and placed on 60 mg of Prednisone daily, for six or seven days, then taper. I knew I had SjS according to the blood tests +ANA and +SS-A, but no doctor had "pronounced" the diagnosis, so I was flying blind at that point. I did not know for sure that a doctor would agree that +ANA, and +SS-A, would constitute Sjogren's syndrome.

When I saw my PCP, he took the opposite meaning from my experience with Prednisone, expecting it to be negative. I had to repeat, that although I didn't yet officially know that I had SjS, I *did* know, quite positively, that Prednisone cured whatever I had had for twenty years! Then he got it.

But rheumy is in the picture now, doesn't seem to love Prednisone for anyone, even those who love Prednisone, like me.

[Meld256]

soycoffee,

If I have not welcomed you properly, let me say "Welcome!"   You'll find this site a great wealth of info. and helpful, friendly people who understand.

If you now have a caring PCP and/or rheumatologist, hopefully you can have a conversation with them about what kinds of treatment they suggest to help you.  I see your rheumy says it's only Fibro.  I got that from mine, too. Then I had a partoid gland infection, sinus infection and thrush.  In addition to joint pain, fatigue and other things.   I knew this was not "just Fibromyalgia."

I found a PCP who would listen and diagnosed me right away. With proper treatment you can begin feeling better.  Please keep us posted, ask anything at all and remember we understand here.

Take care,
Melinda

[A66eyroad]

I've read somewhere that the saying among rheumatologists is that they have one great drug in their arsenal - prednisone - and they spend most of their time trying to wean their patients off it.   

I wish there were some other kind of medicine that worked as well and as fast. Has your doctor considered placing you on Plaquenil?

[lighthouse33]

In the past, rheumatologists gave prednisone to their pateints, the patients felt better.  But in time all of their patients became crippled or got osteoporosis.  The rhuemies learned their lesson, the drug is a catch-22.  So nowadays, they try to be careful in how they administer it.  Believe I read that in a book but can't remember which onoe.

I have a high risk of getting osteoporosis, both parents have it and I've been on the Depo Provera shots for endomitriosis and it is know to cause osteoporosis.  I was on a low dose of prednisone for a year but the rheumy made me get off it.  She said she doesn't mind giving it to me for flares but doesn't want me on it all the time.

[soycoffee]

Here are two articles about Venus Williams -- her going public with her diagnosis, together with information about Sjögren's Syndrome.

http://news.health.com/2011/09/01/sjogrens-syndrome-venus-williams/

http://www.nytimes.com/2011/09/02/sports/tennis/2011-us-open-venus-williams-describes-fights-with-fatigue.html?pagewanted=2&_r=1

I came out of the close (figuratively, as someone who sort of always knew she had Sjögren's) when Venus Williams pulled out of the U.S. Open and announced her illness. I then watched Serena Williams, two weekends running, lock away another U.S. Open Tennis Title. I hope she never gets it. I hope Venus can come back to play Serena! Wouldn't that be something.

[A66eyroad]

I read somewhere not too long ago (of course, I can't find it now) that Venus and Serena are both going to be playing in a tournament soon. Maybe in Mexico?