Hi Everyone, recently went to my first official appointment with a Lupus specialist. She reviewed my records and past labs and said I have antiphopholipid syndrome but not the Lupus part of it …Yet. more than likely will develop it. Well, not that I am wishing this one myself or anything, but truely do have all the symptoms! just not the blood work to prove it. only 1 time time did i have a positive ANA. at that visit they drew a whole slew of labs ans just called with results. well, now they are saying even my antiphospholipid is negative. They said to keep taking the aspirin and plaquinil. and i will likely convert back to positive, but …really? I’m so confused! and now new symptoms are showing up along with all the others. My daughter was cutting my hair and found multiple small red blister like sores in my scalp. smh…now I don’t know what to do!
I have NEVER tested ANA positive, yet a kidney biopsy showed significant Lupus activity. How are your kidney and liver functions. They are another indicator of the disease.
Do your research and at your next visit ask for your Doc to look at the other results.
Best of luck,
DeAnne
I was told that the levels can fluctuate in some patients, which is what can make an official diagnosis difficult to obtain/keep. They thought for years that I had relapsing-remitting MS until I had a major flare and my labs popped for SLE, APS, etc. The most important part, whatever they decide to call your disease activity at any given time, is monitoring of the kidneys and also regular check ups with Rheumotology. My doctors firmly believe that Plaquenil may be able to prevent further disease activity and may also be able to delay full onset for borderline patients. This is their opinion - I’m sure others have different ones. I’m also on daily baby aspirin preventatively for the APS. I do understand what you’re saying about the diagnosis - I don’t want to be ill, but I am; so let’s call it what it is. Best of luck to you 
Most people with SLE do go back and forth about ANA. Do not worry about it and do not listen to your GP or primary doctor say you do not have lupus due to negative ANA.
As sores in scalp you wearing hats? You must wear hats in sun if you are sun sensitive which think all of us are...or most. Also wear sunscreen daily even in winter...and you might not be able to go in sun at worse times for it...or have to wear long sleeves sun protection clothing. I must some days and others as long as i have hat on and sunscreen am okay if not directly in sun...sun and shade..like out walking my dogs.
There are drugs that can cause sores in your scalp....but not two you mentioned. SO if on anything else check it out. You might by otc cort cream and try it to make it go away.
This first year will just like learning year.....you sound like you are going to be okay...not extreme case which is good. Everything that goes wrong will not be due to the lupus which we all think the first year! i say be gentle to yourself this year...keep journal about what makes you most tired and even possibly cause flares...periods where you are just exhausted. Low grade fevers are normal so do not worry...but you might take it few times per week for a bit so you know your normal body temp.
Ask anything....we all understand and all want to help. I am sorry...i get it i scary but as my first Rheum said...look at like you are diabetic...most live nice long lives as long as they take care of themselves. Educate yourself too.. Lupus foundation of American and other non profit lupus sites are great places to find links and info even clinical trials which i hope people try to participate in as that is where real information will come from for rest of us.
welcome you and try to not worry....promise in many ways it will get easier..understand it better ..kind like getting new job..hard and confusing at first but then it gets to be old hat!!
Super reply, Sis.
Hope you are doing well. You are right, first year is terrifying and this site is truly a Godsend.
XOXO,
DeAnne
siskiyousis said:
Most people with SLE do go back and forth about ANA. Do not worry about it and do not listen to your GP or primary doctor say you do not have lupus due to negative ANA.
As sores in scalp you wearing hats? You must wear hats in sun if you are sun sensitive which think all of us are...or most. Also wear sunscreen daily even in winter...and you might not be able to go in sun at worse times for it...or have to wear long sleeves sun protection clothing. I must some days and others as long as i have hat on and sunscreen am okay if not directly in sun...sun and shade..like out walking my dogs.
There are drugs that can cause sores in your scalp....but not two you mentioned. SO if on anything else check it out. You might by otc cort cream and try it to make it go away.
This first year will just like learning year.....you sound like you are going to be okay...not extreme case which is good. Everything that goes wrong will not be due to the lupus which we all think the first year! i say be gentle to yourself this year...keep journal about what makes you most tired and even possibly cause flares...periods where you are just exhausted. Low grade fevers are normal so do not worry...but you might take it few times per week for a bit so you know your normal body temp.
Ask anything....we all understand and all want to help. I am sorry...i get it i scary but as my first Rheum said...look at like you are diabetic...most live nice long lives as long as they take care of themselves. Educate yourself too.. Lupus foundation of American and other non profit lupus sites are great places to find links and info even clinical trials which i hope people try to participate in as that is where real information will come from for rest of us.
welcome you and try to not worry....promise in many ways it will get easier..understand it better ..kind like getting new job..hard and confusing at first but then it gets to be old hat!!
Hello, my doctor ran so many test on me, I thought I was a pin cushion. Hope you feel better soon…Beverly L.