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Hello, everyone. My name is Stacy and I am a 35-year-old wife and mother to two boys, 19 months and 7 1/2. I have been sick since the age of 16, with an increasing amount of horrible symptoms. Finally, last month I was diagnosed with lupus by a rheumatologist and put on mobic and plaquenil, but I'm questioning whether or not the diagnosis is accurate. I have a positive ANA, which is why my primary care physician referred me to the specialist, and I have an increased CRP, extremely high anti-dna, increased rheumatoid factor, and extremely high c3c. My allergist told me that lupus patients usually have a low c3c, though, and that it seems like I have rheumatoid arthritis instead of lupus. My symptoms are: sun sensitivity, hair loss, extreme anxiety, dizziness, moderate muscle pain throughout body, slight joint pain, extreme fatigue that comes and goes, and nausea. My most debilitating symptom is that I have reactions to ALL foods, drinks, strong odors, personal care products--everything, and I am miserable all the time. My rheumatogist says that I'm just an "extremely sensitive individual" and maybe I should see an allergist! I told him that I had to stop allergy shots because I was having unusual reactions to the injections. The reactions that I have to everything cause a great amount of head pressure, fuzziness, difficulty thinking clearly, and when I bend over my entire head throbs intensely like I have a sinus infection. I've been to ear, nose and throat specialists, numerous allergists, naturopaths, chiropractors, gastroenterologists, and still no help. I have had MRIs of the sinuses which have determined that my problem is not sinus related. Does anyone know if these weird reactions to the environment can be caused by lupus or another autoimmune disease? Is it possible that I could have been wrongly diagnosed? Thanks in advance.


Stacy :(
 

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Stacy,

Hello and welcome to the Lupus Site. As far as your diagnosis I think that the Rheumatologist was correct. I base that on the high anti-dsdna which is a test that is definitive for Lupus. You can have lupus without that test being positive but when that test is positive and other criteria are met then Lupus is diagnosed. Sun Sensitivity and hair loss are also a lupus symptoms. Joint pain occurs with Lupus in addition to RA. Many lupus patients have a positive RF factor it is not just found in Rheumatoid Arthritis. Lupus patients also tend to have more allergies than the normal population.

I am a bit curious as to why the Rheumatologist didn't start you on a course of prednisone to quickly get the lupus slowed down. I am not sure how much your allergies will improve once your lupus gets under control. With the sun reaction you will need to avoid the sun as much as possible. When you do go out make sure you have your legs and arms covered and where a wide brimmed hat to protect your face. The hours between 10AM and 4PM are when you should avoid all outside activity.

Perhaps your GP could refer you to an immunologist at a teaching or research hospital. Doctors at those type of centers generally are up to date on all new medications and treatments for their speciality.

I look forward to seeing you posting here on the boards.

Take care,
Karen
 

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Discussion Starter · #3 ·
Thanks!

Thank you very much for your quick and very helpful answer. I've felt so alone since I found out about my condition, as I don't have anyone who knows what I'm going through. I have a supportive family, but they don't completely understand everything. All they know is that my sister had lupus and died from complications. My family freaked out more than I did, and I was the one comforting and reassuring them when I first found out about the lupus! I'm very greatful to have found this community!


Stacy :)
 

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Stacy, I had a large number of reactions to things before I was being treated for my Lupus. Things are much better these days,
x Lola
 

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Hi Stacy

First of all welcome to the Forum. I was very sorry to read that your sister died from Lupus. That must have been very heart breaking for you all :hug:

Karen has given you some good information. I also have anti dsdna antibodies which clinched my diagnosis for Lupus. They are about 98% specific to Lupus so the chances that you have been wrongly diagnosed are, I'm afraid. miniscule. I also have a high positive Rheumatoid Factor but dont have RA. I was convinced in the early stages of my diagnosis that I have RA and not Lupus so I understand your anxieties.

RA is usually diagnosed if xrays have shown actual joint/bone damage. Lupus doesnt cause bone erosion as it affects the soft tissue around the joints and not the bone itself. If you or your Allergist are concerned about RA perhaps it would be a good idea to get some xrays done? Its possible to have both RA and Lupus and indeed overlaps of various other connective tissue diseases. Unfortunately having Lupus doesnt exclude us from having many other medical issues.

It must be so difficult trying to cope with so many allergies. Karens suggestion of trying to find an Immunologist is one which really bears following up. They are the immune system experts and are trained in the kind of 'detective' work that is often needed with more complicated cases of autoimmune conditions.

I hope you find this community helpful in your health journey. There are many wonderful Lupus patients here with years of experience of dealing with this disease and they will only be too glad to help in any way.

Take care for now
Joan:rose:
 

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Unfortunately, it's not an either/or thing. You could have a few different things going on - allergies and lupus. RA and lupus (RA can be ruled out with normal xrays though generally speaking). You could have multiple chemical sensitivity and lupus. But I think you definitely have lupus - the symptoms and bloodwork and family history make it almost a sure thing. There just might be something else also causing your other symptoms. Or it could all just be due to lupus and the many MANY different manifestations it can take.

The most important thing is to get treatment, and get symptoms under control as much as possible. I second asking about prednisone if you are not getting sufficient relief from your symptoms at this time. Even just a brief 1-2 week burst and seeing if improves these apparently unrelated symptoms.

Your description of the head pressure/headache and chemical sensitivities have really hit a nerve with me in particular. It's exactly what I have been suffering from for the 2.5 years now. In my case, it started well after the lupus diagnosis. The head pressure/throbbing when bending over I'm also quite familiar with. I too went to ENT, allergist (who ran tests again and found NO positive reactions although I had 3 very positive reactions just a few years earlier), neurologist . I have never gotten an answer or relief to it, only dx'd with chronic rhinitis of unknown origin & chronic daily headache. Allergy medication didn't help me at all either by the way...

So best wishes for you - finding a way to help ease those symptoms. Mine are better but I have learned to use products that have no smell, do not use any cleaning chemicals myself anymore, and in fact leave the house when it is being cleaned & air it out when I return no matter how cold/hot it is! I use the mildest of soaps and shampoos, with very low to no scent, etc. It helps.
 

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Stacy,

I too had a lot of unusual allergic reactions before being treated for Sjogren's/possible Lupus and had a high ANA,SSA Lupus anticoagulant etc... I didn't go through the allergy testing but struggled with skin rashes that were "allergic dermatitis" during the year or so before being diagnosed and started on Plaquenil. Interestingly prednisone always cleared up the rashes but they always returned within a week or 2. Once I started on Plaquenil for several months they dissappeared and haven't returned! Hope the same holds true for you!

Nancy
 
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