I'm not sure what to do at this point. My insurance is changing 6-1-14 and I'm trying to locate a decent rheumatologist that is under my insurance. In the mean time, I have no official diagnosis. Everything points to SLE and APLS....low WBCc, dropping platelets, dropping C3 now borderline low, 2 types of anti-phospholipid antibodies, rashes, weight loss, hair loss, joint pain/swelling...etc....the one thing I'm missing (out of all things!) is a positive ANA. Meanwhile the fatigue is becoming completely consuming to the point that sometimes it becomes very difficult to even walk or talk. I'm on NO medication for any rheumatic conditions besides OTC NSAIDS and my Restasis for inflammatory related chronic dry eye. Is is worth it to call my rheumatologist to get squeezed in to try and ask for antimalarials, or is it not worth even trying? I don't know if he'll take me seriously considering my negative ANA, even though he's already mentioned ANA neg SLE in passing, but stated it is "rare".
Which APLs are positive- just curious altho the treatment is just aspirin unless there are complications. I would certainly ask about Plaquenil altho it takes several weeks to work You should also ask about Vit D as low levels here will also contribute to extreme fatigue
Gylcoprotein IGA and Cardiolipin IGM. I forgot to say that I started baby aspirin and krill oil independently. People in my family tend to have heart attacks at young ages anyways... I've been ill for months, so several weeks isn't a big deal at this point, I just want something to start working because the fatigue is starting to become too much. So you think he'll take me seriously though? My vitamin D level at last check was 40, which they said was "nothing to be concerned about" I know it's within normal limits, but on the lower end.
My first rheumatologist's appointment I had what seemed to be a superficial venous thrombosis in my left forearm and was having an acute increase in shortness of breath uncharacteristic of my asthma, but I don't know if he was really thinking APLS at that point. He and his PA had looked at my previous labs that my dermatologist and seemed like they had their minds made up that they would find nothing. The labs that he ordered that day covered a broad range, and he actually seemed kind of surprised that the antibodies came back positive. Makes me wonder if he would have ordered a D-dimer and chest CT what he may have seen,,,,
the negative ana is not as rare as doctor's would have you think, I've had lupus for over 25 years now, I've some of the same problems all the while with a negative ana. If nothing else I've learned lupus is many things and not confirmed by just one lab test. especially when a handful of other labs may indicate lupus related disease processes going on.
I would love to here how other people handle the fatigue. As you say it is consuming my days.14 hours at night and a nap during the day.
Hopeful, your post makes me hopeful lol. I've heard that from a few people with confirmed SLE. I had three family members on my mom's side with confirmed SLE, I'm just the lucky one with enough criteria for diagnosis, but due to the neg ANA, I can't get proper diagnosis and treatment at this time it seems like.
I've emailed my rhuematologist's office, so I guess I'll wait and see what happens next.
Ranae, up until recently, I was able to manage by kind of staggering my activities and not planning too much on one day. Also, I eat super healthy and have been that way for quite some time...the general malaise (sometimes with nausea) has for sure decreased my appetite some days, adding to the weight loss, and I'm sure doesn't help the fatigue. Physical activity/exercise can help to an extent, but when it gets to the point that it's literally physical fatigue (not just that sleepy feeling or mental fog), pushing myself at all throws me into a flare and/or just makes it to the point where I can't walk or talk. I've had to cut my hours at work, and I can't do nearly as much as I used to be able to on my now many days off. I'm normally a highly productive person; the motivation, interest..ect is there so I know it's not psychological in etiology, it's physiological.
Just hang tight. If your insurance is changing soon than just hold on. My understanding is that antimalarials take time to work anyway, waiting a couple of weeks probably wont change too much anyway. I assume your ANA will be tested again soon. Remember there are risks with antimalarials too. I often have to remind myself to trust the Drs. Its hard when you feel rotten.....
Lord have mercy hold on and be strong,try another rhemotologist so they can run more test,lupus is a hidden disease and you have to run so many test,I too was suffering not knowing what I had but had all the the being of lupus.When you don't feel good you just don't feel good and want answers,my goodness with all the crap we go through all they can come up with for pain is plaquenil ,My prayers are with you ,please be strong.
Yes maybe Plaquenil and vit D and aspirin
I have had negative ANA results whilst going through the exact same severity of devasating symptoms that I have when my ANA is high and positive . I have had fluctuating Neg / positive ANA results in the past
A good specialist needs to listen to your symptoms not just clinical results
I have had some of my best overall blood test results in the past when i have been at my utmost worst in everyway
Sorry you're dealing with this. I hope you get some answers. Methotrexate, one of the medication options that treat lupus is Plaqunil doesn't work), is the only thing that helped my fatigue. (It suppressed the immune system.) I hope you get some relief soon!
I to would try another dr. Neg ANA does not mean no lupus.there are more specialized test to dx lupus.
Thanks so much everyone. Sorry for the super delayed reply. I did get a response fro my rheumatologist, he started me on Vitamin D and wanted to start me on plaquenil, but due to not being able to monitor and see me, did not. SLE kept getting thrown around as a term, saying "The top lupus docs suggest Vitamin D..." and "If we were to continue to monitor, plquenil would be what we would start you on..." My PCP keeps mentioning SLE, but as of right now, everything is still just speculated. My kidney function did recently decline, but has since recovered to nearly a level you would expect to see in someone my age, so that is a relief at least. My PCP started me on Mobic, and wants me seen by rheumatology ASAP, as I was running a low grade temp and exhibiting flare symptoms last visit, so the doctor's office at Washington University School of Medicine Rheumatology department are sending all the referral paperwork over today to my PCP....fingers crossed they'll be able to see me in a reasonable amount of time. I'm glad I've decided to go with my gut and my nursing knowledge and be more persistent, otherwise I don't think I'd be taken as seriously. There's no way that my creatinine increase (decline in kidney function) would have been caught and documented had I not spoken up, and no way my old doctor would have started Vitamin D and basically stated that he's treating me as a SLE patient. So those of you scared to speak up because you don't want to seem pushy or like that "crazy patient", speak up and be heard. We don't deserve to feel like hell on a daily basis, and they need to know that.
Side note: One of my friends was just diagnosed with ANA Neg SLE via skin biopsy. I'm really starting to believe that this is way more common than the medical community recognizes!!!!
Yes it is a lot more common than you think I'm glad someone else now knows this does happen. We have to speak up for ourselves, too many times we are seen as the crazy patient, I used to be an RN also and sometimes my knowledge is more of curse than a blessing, I'm glad you're able to get the help you need. take care thanks for the update