Hi everyone,
So, I've been diagnosed with SLE for 1 month, and I have found so much information in reading through the threads here. I was diagnosed on my 26th birthday, and have been reading about the disease since. I've found that the more I read, the more questions I have. Some of the questions I have are appropriate for my doctors, but I'd like to share my story, and maybe get some input from all of your experience. I apologize for the lengthy story that follows, but I want to get some of these questions off my chest!
[Quick background- I live in Canada, and am in the thesis-writing stage of an MA, so I'm lucky to have a flexible schedule and quite a bit of time to hopefully get better.]
I really can't pinpoint when my more general symptoms began, but I definitely started noticing changes in my energy level and mood last winter. It was also this time last year that my hands started showing more severe Raynaud's-like symptoms when I got cold. I've also been losing more hair since last spring, and this summer I was getting Raynaud's hands even in the frozen aisles at the Supermarket. I seemed to get tired really easily, after doing something as simple as the dishes, and I didn't feel excited to do much, but tried to push myself anyway, going to the gym up to five times a week, and then feeling useless for the rest of the day.
In September my gym membership expired, and I didn't renew: we were looking seriously at several properties, and knew we were getting a dog, so I wanted to wait and see what my routine and location would be. We then visited my home for Thanksgiving (Oct. in Canada). Our trip was great, but exhausting! When we were there I noticed my left great toe was sore, but I attributed it to too much hiking and dancing at a friend's wedding.
Arrived back home, and moved into the house. My toe pain came back, and was accompanied with pretty major swelling. I saw the campus doctor, and she sent me for blood work and x-rays, suspecting rheumatoid arthritis. The blood work only showed slightly positive ANA levels, which the doctor said could be the result of any little infection of some inflammation. She wanted to get me in to see a rheumatologist, but there's a severe shortage, and up to a 2 year waiting list in my province. My tests were monthly, and by December, the toe pain was gone, and was replaced with some swollen digits, sore wrists, ankles, and painful arches in my feet. Every morning was a struggle to get out of bed, and I had to go down stairs sideways, barely able to turn doorknobs most mornings. The campus doctor sent the rheumatology requisition form, telling me to expect at least a 6 month wait, and I started Arthrotec, which didn't really improve the joint pain. I was so depressed at the thought of further deteriorating while waiting for my appointment.
I went for my monthly blood test Friday Jan 7, and the results came back that my platelets were 59. So I got a call the next Monday asking me to get tested again the next day; on Tuesday, I had my blood drawn, came home, and got a call that the platelets had dropped to 8, and it was then that I noticed little red hemorrhage points on my hands and wrists. I had to get to the ER to see a hematologist waiting for me, and was told to pack for a few days (this is the day before my birthday!).
Over the next 24 hours I saw several hematology and rheumatology residents who all had different opinions, but finally the rheumatologist came to see me, and she and the hematologist confirmed I have lupus (SLE). It was also discovered through xrays that my hands are showing signs of osteopenia, or bone thinning. Very thankfully, I have never (yet) shown any lupus skin manifestations, which may be due to the very little sun we see here. I stayed in the hospital for a week, as I developed a terrible stomach flu after being there for a few days.
The criteria I fulfill are: ITP, inflammatory migratory arthritis, positive ANA, anti-double stranded anti-DNA, anti-smooth muscle antibody, and the Raynaud's.
I was started on a mg/kg dose of Prednisone (about 70mg), and have tapered 10mgs/week recently, as my platelets have risen. I'm now down to 40 mgs. I have an eye appointment in 2 weeks, and then I'll begin Plaquinil. I've been doing yoga once/week in a class for folks with limited mobility, and writing down everything I eat. I avoid refined products, including all white sugars and flours, red meat, alfalfa, and am eating between 1500-2000mg sodium/day. The only pain and stiffness I ever have now is in the arches of my feet, my right hand digits, and my left pinkie knuckle. This pain is for the most part much less great than before Prednasone. I'm a little bit more emotional, sometimes euphoric for silly reasons, but I haven't been raging or sleepless (aside from a few nights). I have seen my Rheumy once, and will again in April. I see my Hematologist weekly, and my platelets are now 159.
SO FINALLY, after that lengthy history, here are some questions I hope you can shed light on!
-Is an ANA of 1:2650 only slightly positive?
-My bloodwork shows 'positive titre = 1:2560 speckled pattern, positive titre= 1:2560 nuclear dot pattern.' In material I've read, it doesn't seem like nuclear dot is common in SLE?
-What does the anti-smooth muscle antibody do?
-I don't have the most recent anti-dsDNA blood work, but back in Nov. it was 4.9, and it looks like the normal parameters are 0-4.2. Is 4.9 fairly low, are they usually higher?
-When my platelets dropped, the blood smear showed that ovalocytes were prominent. Does anyone else have this?
-And last question, how does ITP complicate lupus?? My hematologist is very nice, and answers all of the questions that she can, but she has said we just have to wait and see. I know that she can't predict the future, but have many of you had successful platelet remissions without being on drugs?
Again, I apologize for such a long story and for all of my questions, but I can't wait to hear your feedback!
Thanks so much, and best wishes to you all.
-Penny