It has been a confusing many weeks. My arthritis symptoms (a.k.a. “crippledom” and “the claw”) have been zapped by a serious mega dose of steroids and a follow-up continual small dose. I am weaning off of them, now, because who wants to end up with Prednisone Moon Face?
This is a real thing. Look it up.
Anywhoo, I have been to see the Rheumatologist. He doesn’t know what is wrong with me, which is of great comfort. Oh, wait, no. Strike that. Reverse it. It is of NO comfort.
He did a very thorough examination, bending and palpating all of my joints in ways that would impress any yoga teacher. He looked at my lab results, from two different doctors’ visits. He ordered a urinalysis and more bloodwork (enough to fill eight vials.) The thought is that I have some sort of autoimmune disease, likely Rheumatoid Arthritis or Lupus.
Neither of these illnesses have a definitive test to diagnose them; it is a combination of many factors, including symptoms. Since I am living in the bliss of symptom-free steroid life, this is something that he cannot assess until I go off the drugs. However, a cold-turkey approach to prednisone cessation would almost certainly cause an immediate return of crippledom, so we are approaching the problem over a period of four weeks. Should I make it through the month (which he says that I probably won’t, because of the expected pain) then I will go back and we will re-evaluate my symptoms without the mask of steroids.
I have also been told (by a trusted Lupus non-doctor friend) that going off wheat may help my problem. However, as the daughter of a chemist, I will not try this, yet. One variable at a time.
So for now, what I can report is: “The patient's antinuclear panel again showed antibodies to SSA and SSB – the antibodies associated either with Sjogren’s or subcutaneous lupus. However, she also had a low level of antibodies to DNA. This correlates more with systemic lupus but by itself is not enough to make that diagnosis.”
That’s all I know, which is pretty much nothing … still.
3 comments:
Hope the month goes forward pain free. Sorry you're still struggling so much. You're in our prayers.
Sucky. We'll continue to pray for the courage, strength and grace that it takes to continue to expect miracles. Sending love.
When I had cancer, I sometimes got tired of people telling me What To Do. So I am not telling you but respectfully urging you to read Anticancer: A New Way of Life by Dr. David Servan-Schreiber. It is the best book I have read on living with and living to prevent cancer or recurrence. It is inspiring, easy to read, and backed by scientific research. The author presents powerful data on the anti-inflammatory diet, lifestyle modification, and mind-body connection.
Good luck,
Barb P. (Clio and Eleri's grandma)
Post a Comment