How does this make sense?

[Sharon]

So I had taken 10mg of Prednisone for a week with no results whatsoever other
than my red eyes becoming a bit whiter for a few days.
After stopping it my joint and tendon pains became worse than they had ever been in my life and I developed a salivary gland!
I then had blood tests redone (two weeks after stopping) and for the first time in 2 years my ANA had turned from positive to borerline!
This would indicate that the Prednisone was indeed having an effect on the auto-antibodies,
however I didn't feel improvement on it and I still feel worse than ever!
Does that mean that whatever is making me feel so ill is not necessarily AI? 

Any theories would be appreciated!

[irish]

This is strange. Sort of like getting worse before you get better. Also, kind of strange that blood work improved but external pains are worse. Cold be that internally you improved but it moved externally. I wonder if you had been on a longer dose the symptoms would have gone away also. hummm. Good luck. Irish

[Sharon]

Yes, it's strange.
They want me on a higher dose of Prednisone for longer now, but I don't dare
with the salivary gland infection.

[Maria3667]

And don't forget, Prednisone is such a spoil sport for mood! I hate it.

Maybe you suffer from the same phenomenon I do, namely an autoimmune system that goes haywire every time it's tampered with... A theory a friend of mine came up with which sounds quite plausible to me.

By the way, did you try rinsing out the eye with pure, hexane free, castor oil? I do this religiously every night as it's such a blessing to my burning eyes.

Wishing you all the strength you need !

[Linda196]

Could it be possible that the salivary gland infection is just the tip of an iceberg and Prednisone opened you up to a systemic infection of some sort? Have you had any fever with these other symptoms?

[gurs]

Dont let that ANA test get to you....Everytime I feel at my absolute worse, my ANA is lower? when Im feeling good, its higher. To me, none of these tests are accurate. It also depends on so many things..medications, supplements etc. Labs can vary too..

At least researchers should be able to come up with better testing for us. I would love to see a test that indicates if we are having a flare etc to help us decide on treatments. Im so sick of trying to figure it out, like if I have an infection, or flare etc.

Gursie

[jazzlover]

Isn't it a "given" that you will get "worse" after being on prednisone? I always felt the same way. That's one reason I avoid it like the plague.

It gets me nowhere.

[irish]

It really isn't a given that one feels worse on Prednisone. Many of us feel so much better that we hate to be off of the steroids. There are some people who don't tolerate the steroids and that is too bad because they can give a person a reprieve from their bad symptoms until some of the big guns can take effect.

Often people will be placed on prednisone and a drug like methotrexate at the same time and as the methotrexate kicks in the prednisone is tapered off.

Linda196 did have a good thought. It is possible that your tube to the glands were so swollen shut that you have latent infection in your glands. This is the sort of infection that lays low in the bushes and slowly gets worse. It can't get out because of the swollen tubes and could eventually get into the your system just by leaking out the walls of the glands. Decreasing the swelling couldl have opened this up and let some of this infection out. This is just a thought. You will have to discuss this with your doctor.

There are many people with autoimmune disease who will not run a fever or even have elevated white cells with infections. Doctors have to use their brain in treating infections in autoimmune patients. Irish

[Sharon]

Maria- Sounds like we're alike, as also tampering with my system with Plaquenil
made it go haywire with neuropathy in under a week. Problem is I feel awful as I am and
really do need systemic meds already. Yes, I tried the castor oil but my eyes turned bright red with it.
What does the Prednisone do to your mood?

Linda- I always have a low-grade fever that comes and goes since the Sjogren's.
I have no idea about the systemic infection possibility, but I have been frightened that Prednisone may release the wrath of my chronically "borderline" EBV on my system.

Gurs- True, not sure these ANA tests represent much. I always use the same lab.
Could be that when our ANA is high it is actually keeping a viral response low?

Jazz- I guess it's not a given. I have a family member who maintained improvement for some time following a taper. I guess everyone responds differently.

Irish- True, my white blood cells are not very elevated even now with the infection and my doctor used that to not diagnose me as well. Doctors need to be better educated!