My name is Brian I am 63 years old ,Although I was diagnosed with Lupus 2 ½ years ago , I feel I have had it since I was around 55. Back then I had rashes and hives that would keep reoccurring , my skin was extremely itchy especially my stomach and back , my joints especially my shoulders would ache so much that I could not sleep, fatigue was very severe .
My family doctor had a few tests done over the next 5 years and his answer was always the same, sensitive skin and you are nearing 60 years old and that’s what happens when you approach that age. He retired and my new family Doctor listened to my symptoms and agreed that there was something wrong, about this time I woke one morning with about 5 blood blisters on my tongue and 4 other ones on my gums, my family Doctor immediately sent me to a Rheumatologist , Lupus specialist and she had a battery of tests done, my blood platelet count was only 7 which is extremely low (average is between 150 to 400) I was immediately put on 50 mg. of Prednisone and after a month at that dosage my blood count went up to around 50. Finally , after 5 years of hell I finally had the answer, I had LUPUS , if I would have looked up Lupus I could have self diagnosed myself 8 years ago.
I have been on 400 mg. of Hydroxychlorine Sulphate a day [ A malaria drug that helps Lupus patients ] and have been taking Prednisone ranging from 5 mg to 20 mg a day for 2 ½ years . All the rashes, Hives, aching joints and itchy skin are gone , the major problem is my blood platelet count , it goes from roughly 9 to 60 , my blood specialist says that I can live with a count as low as 15 as long as I am not bleeding anywhere. I go for a weekly blood test if my platelet count is under 20, every 2 weeks if it’s over 20, my count is 18 right now and I am on 10 mg. of Prednisone a day, the blood specialist says that they may have to remove my spleen as he feels that is killing my platelets, he says there is a success rate of about 65% that that will have a positive effect on my blood platelet count . Blood platelets help your blood to coagulate, if low you will have problems with bleeding, myself if my count is under 15, I have had a major problem with nose bleeds . I am obviously concerned that if my spleen is removed and it does not help my platelet count then I am open to more problems without a spleen. (chance I may have to take???).
I also have had major problems with heartburn (another lupus symptom) and even with medication seems to be an ongoing problem, my name is Brian and I live with Lupus.