My rheumatologist suggested sometime ago that I write about my SLE (lupus). She had in mind a book. I am starting with this website.
For those who are unfamiliar with lupus, or new to the diagnosis in one's self or a loved one, I want to say that my first reaction was shock, and something of denial. I had known two people with lupus prior to my diagnosis, and both of them died from it in their twenties, when I was in my twenties. I did not want to believe that I had this disease.
At the time of my diagnosis, I was about 40 and had been having "strange things" going on with my body for at least a decade or more. At that time, the average time to get a diagnosis was 6-12 years, which put me right in the "average" patient's experiential frame. I am happy to say that this state of affairs has improved since I got my diagnosis.
When my first rheumatologist outlined the medications, I had another shock, because the anti-malarial plaquanil (hydroxychloroquine), she said, could cause blindness. As someone who reads a lot, loves art, the beauty of the world, and the expressions on human faces, I couldn't imagine life without sight. As a consequence, I refused to take the drug and relied on ibuprofen to handle the pain, which I found out might have been a bigger mistake. While I liked that doctor well enough, my refusal to take her advice and the distance between my home and her office resulted in my seeking out another doctor. I liked him as well, but there came a point at which he had no open appointments before the end of a calendar year, and I needed to see someone. So I ended up seeing another doctor in his practice group, and I absolutely loved her. I have been with her ever since. I'm also happy to report that new medications are available, although they are pricey. Since I am now without insurance, the $2000-$3000 a month charge for the best of these is outside my range of affordability. So now I am desperately praying that I can get reinsured somehow and take advantage of the new medicine. The prednisone I am currently taking, and, for the first time, it's not kicking the lupus into remission.
i had an episode in mid-May that led to a hospitalization, primarily for an extremely low platelet count, or thrombocytopenia (~33K when the bottom end of the normal range is 150K). Since I was having stomach and intestinal distress, my doctor thought I might also have Crohn's Disease and might be in danger of bleeding to death. So I went to the county hospital. This was not a gratifying experience. Nor one I would wish on anyone who is really sick. I hope never to have to go there again.
I go Friday for a screening interview for a clinical trial for the efficacy stage of a drug. My Rheumatologist thinks I should go on the new drug Ben Lysta, which is $2000-$3000 a pop and administered (I think) once a month. With no insurance, this is not feasible. This trial drug was described during a phone interview as "similar to Ben Lysta." Of course I might be assigned the placebo.
I will continue the prednisone while in the trial, if I'm accepted. Been on that too long already, but I can no longer take methotrexate or Hydroxychloroquine, nor aspirin, ibuprofen -- because they all "eat" platelets. The good news is that all the tests, drugs, etc will be paid for during the 52 trial, if I'm accepted, and that at the conclusion of the trial, if I was on the placebo, I will receive the drug free until FDA approves it. Reading through the protocol now. However, last dsDNA and Comp3/4 tests showed a worsening condition, not sure why, and it was a surprise because I have been feeling so much better. The prednisone will shave years off my life if I am stuck with it. Without any treatment, the lupus will take out my liver or kidney or something else. So, this seems like a feasible route to take.
UPDATE: Almost qualified but the diagnoses I got at Ben Taub regarding m yheart and liver, along with a wound on my leg worried the Dr. So, I'm in a holding pattern, not totally ruled out, but waiting for the HCHD to complete some tests. I think the diagnoses were offbase, and so does my Rheumatologist. The last Dr I saw at the HCHD clinic thinks the heart diagnosis is wrong. Echocardiogram should tell us, but they couldn't give me an appointment until next month.Big problem is the cirrhotic liver diagnosis. To evaluate that, they need a biopsy, but with my platelets still under the normal range, it's too risky. So I'm going back on hydroxychloroquine for now and see if we can get the platelets up and stop the worsening dsDNA and C 3/4 results. Catch22? If my symptoms improve too much, I won't qualify and if I am accepted but I need higher doses, I may get disqualified.
30 March 2012
Interesting article about autoimmune diseases & childhood
:Why Getting Grimy As A Child Can Make For A Healthier Life
One thing to consider: as a child, I made mud pies, played WWII in the freshly dug sewage pipe trenches (they were putting in sewers out here), swam in muddy water, walked the water filled ditches looking for crayfish, and otherwise got into dirt if it was there to be gotten into. I still developed SLE. However, I can say that I suffered few childhood colds, rarely caught the flu, and despite my rheumatologist thinking I wouldn't make it a year when I first came to her, I'm still here more than 10 years later. I've had this disease over 30 years, during about 15 of which it was undiagnosed and untreated. Unlike many others, I have had no internal organ involvement. So perhaps it can't prevent SLE but perhaps it can moderate the effects. Just something to think about.
LUPUS IN YOUR GENES (and JEANS!)
LUPUS or MALARIA?
29 April 2010 Interesting Research Makes Connection Between Lupus and Malaria
Gene: Fc gamma RIIB decreases risk of malaria but increases risk of lupus
11 August 2010 Lupus gene 'protects against malaria'
7 August 2012
Survey Reveals Lupus' Ability To Wreck Careers
10 August 2012 LUPUS AND STAPH INFECTIONS
Staph Study Could Help With Treatment for Lupus
Increased Risk Of Lupus Possible Following Chronic Exposure To Staph Bacteria
Tests for Lupus
Data Sources:Anti-Sm Testhttp://www.eurodiagnostica.com/index.php?headId=3&pageId=3&langId=1&catId=1&productId=18
Antibodies to DNA, SM and RNPhttp://www.uptodate.com/contents/antibodies-to-dna-sm-and-rnp
MEDICAL ACRONYMS IN LUPUS
There's a handy search for acronyms which you can narrow to Science & Medicine here: Acronym Search
LUPUS AND ETHNICITY
LUPUS IN CHINA
LUPUS IN NATIVE Aemricans about 10X the rate in the general population
LUPUS MEDICATIONS: SIDE EFFECTS, RISKS, ETC
BEN LYSTA [monoclonal antibody, biologic] Belimumab
[estimated annual cost of $35,000 as of June 2012]
Typically 1x every 2 weeks for the 1st 3 doses then 1x/month
I get it for $20.78 for 60 200 mg tabs at Wal-Mart
METHOTREXATE [chemotherapy] I can no longer take this due to my low blood platelets [see research into metho & curcumin in right column]
PREDNISONE: [corticosteroid] $8 for 60 10 mg tabs $10 for 90 5 mg tabs at Wal-Mart
CAN ELEVATE BLOOD SUGAR (about 10-24% of c ases experience this), in some cases may dramatically lower it.. Going off the prednisone usually reverts to normal blood sugar levels. Do not take ginseng with prednisone! Can take years off life with prolonged usage per my rheumatologist.
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