i'm trying to figure out what exactly is wrong with me, this is gonna be a book so please bear with me. I'm 39 years old when I was 16 I was diagnosed with Hashimotos disease, from there its been downhill. They supossedly regulated my thyroid and numbers are beautiful but was still fighting symptoms. Fast forward to my 30s I was diagnosed with Imflammatory arthritis and put on methotrexate. Switched insurance and had to swap doctors and was undiagnosed. Gave up on the autoimmune hunt at 33, until at 35 saw an opthomologist who diagnosed me with sicca syndrome and sent me to a new rheumatologist, lots of bloodwork and radiographs later she suspected sjogrens syndrome only my c reactive protein was high at 1.4 We discussed plaquinel but the stuff scares the hell out of me (aunt with lupus went blind) Now Im a collection of symptoms and trying to figure out if this is Lupus and sero negative.
current working problem list: migraines, IBS-C, dizziness, mild sun sensitivity, sinus trouble, dizzyness carpal tunnel syndrome (both wrists done in 2018) reynaud's, vitilago, brain fog, fatigue, Iron definenciy( treated with Iv Iron, I cant stomach the pills) Hairloss, joint stiffness in the morning but no active inflammation.
All my blood work is negative /normal except my complement 3 is low and c-4 is dropping. Currently comming off a pred taper for sinuses and have felt better than I have in several years. Any pointers on getting to the bottom of this? I feel like all I'm doing is treating symptoms that show up and not the disease and am getting sicker as we do.
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Litha
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Celiac disease could cause also iron deficiency and it is an autoimmune condition. That is easy to check...mctd comes w reynauds, did you check the full ENA panel, not only lupus autoantibodies???
Well some people get diagnosed w lupus even thou they don't have positive autoantibodies, and they respond to therapy. There is no treatment for lupus just treatment for symptoms so if you have lupus you might need to adjust your expectations and be satisfied w treating symptoms. If your doctor gives you standard lupus therapy and you respond positively then you probably have lupus. For example a mild medication is hydroxycloroqinin and it usually helps first with joint pain. Did you ever try that?
Oh no! Sorry to hear about your aunt. That reminds me im due for my six month eye check up... it's a good experiment to see if you get worse when off of it. I see the difference after a few days of even reducing the dose...
You sound like many of us here. You have had an unusually long and difficult road. By the drugs you have been on, it sure sounds like the doctors have been treating you with an unspecified autoimmune disease. Maybe it isn’t a question of giving up on a diagnosis but just asking the rheumatologist how he/she sees you. There are many of us who do not fit neatly into a box. Some of us have UCTD, some lupus-like autoimmune disease and some clear cut lupus.
Doctors vary in how they characterize patients, but they should be treating your symptoms, not the name. Generally, unless there is confirmed kidney disease, rheumatologists do not give a diagnosis of lupus when the ANA is negative. But everything is brought into the picture. You have low complement. My doctor seems to put emphasis on that. Even though my ANA is positive, my normal complement levels and normal anti- DNA bias against lupus. Others doctors may say he is too rigid. But he says, in the end, it is just a name and you have to know the patient.
I'm starting methotrexate on Monday as I developed an ulcer possibly from anti inflammatory meds for lots of years BUT don't be scared of Plaquenil. I've been taking it in excess of 10yrs but have had regular eye testing to make sure there is no evidence of damage and there isn't.
I have Sjogrens, Hashimoto, Reynaud's, Rheumatoid arthritis and unrelated, Orthostatic Tremor. My mobility is pretty crap but am well monitored medically. Treating symptoms is our only option! Keep smiling! 😁
I totally understand your frustration Litha. Over the past 20+ years I've been diagnosed with RA, Sjogren's, Bronchiectasis, Graves & Temporal Artritis and, just this week, my GP put the jigsaw of current symptoms and previous diagnosis together and apparently I have Lupus. All the symptoms that you mention apart from Carpal Tunnel match my experiences and following an accident I was also told that my pre-op blood tests showed that I had Lupus Anti-coagulants which would affect my blood clotting. I think that, basically, all the specialists have pieces of the jigsaw but don't communicate in a way that will provide the total picture. With regards to Plaquenil I'm sure it works for some people but when I was prescribed it for RA I couldn't tolerate it, despite trying it out twice. Also, steroids are not an option for me because I also have osteoporosis which was diagnosed almost 30 years ago. I think the best advice I can give is to keep fighting to get the help and support you need and be kind to yourself.
The lupus anticoagulant is actually related to APS, antiphospholipid syndrome, which does have to do with blood clotting. I think I read about 40 percent of lupus patients also have APS. I have APS and still dealing with whether I have lupus also.
Thank you for your reply When I phoned my RA department about it I was simply told not to worry - lots of people with RA had Lupus Anticoagulant and not to worry about it, and next thing I knew was my next appointment with my RA specialist has been put back from September to next May which will mean I won't have seen him for 18 months. My GP was furious when told her. I strongly suspect that because of my age (71) I'm not seen as worth the effort, but I'm still working (have my own consultancy business) and have no intentions of giving it up.
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When I phoned my RA department about it I was simply told not to worry - lots of people with RA had Lupus Anticoagulant and not to worry about it, and next thing I knew was my next appointment with my RA specialist has been put back from September to next May which will mean I won't have seen him for 18 months. My GP was furious when told her. I strongly suspect that because of my age (71) I'm not seen as worth the effort, but I'm still working (have my own consultancy business) and have no intentions of giving it up. 
Hydroxchloroquine and flare ups
Another post on diagnosis 
Just diagnosed Lupus today 
Lupus or another Autoimmune Disease?
I've just been diagnosed with Pernicious anemia and vitamin d deficiency still waiting on more tests for lupus 
