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Questionable diagnosis

642 Views 4 Replies 5 Participants Last post by  Clare.T
I first went to the rheumatologist in October and was diagnosed with lupus and rheumatoid arthritis. My ANA was 1:640 and a RF of 6.7
She sent me home with a ton of blood work to take care of...I was seronegative for most of the blood work, but she said that she was concerned about the RA and was starting me on methrotrexate and prednisone for the pleurisy(which she said was probably the lupus). When I went back the next time she upped the metho because she didn't think it was working. I asked her how long I would have to be on meds and she said expect to be on meds for the rest of your life. I cried and then asked if both the lupus and RA were hereditary to my kids and she said yes, but she didn't think it was lupus mostly RA based on the questions she asked me.

Here are my symptoms, I won't mention the arthritis part...

hair loss, face rash on and off across the bridge of my nose, rash on chest after sun exposure, mouth sores, nose sores, raynauds phenomenon, numbness and tingling in hands, and I am sure there is more that I am forgetting thanks to my forgetfullness!

I don't know if I should press this with her again or not.

Can anyone help me please?

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Welcome to the Lupus Site. There are some of us that are in the "overlap" club here on the boards. My diagnosis is Lupus overlap Scleroderma, RA and Fibromyalgia. I also have Raynauds which is fairly common with Connective Tissue Diseases. I am also negative on most bloods except the ana and the igm cardiolipins.

You are very fortunate to have found a doctor who is treating you on your symptoms and not insisting on other bloodwork being positive. It can often take awhile to find the right combination/doses of medications to bring our disease under control. I don't know what dose of Methotrexate you are on but I am on 20mg. Everytime we try and lower it I flare up.

I think you do have a doctor without a good bedside manner. I will say that while they believe Lupus and RA plus the other connective tissue diseases are heriditary it is not yet proven. The chances increase something like 10%, over the normal population, for children of Lupus patients to develop a connective tissue disease. I know of no one in my family who had a connective tissue disease. My disease seems to be an environmental trigger.

At this time Lupus is not curable but it is very treatable. There is so much research going on and new medications on the horizon. They have apparently found a few genes that are connected to lupus, there is a link to the article in the Living with Lupus Forum.

Hang in there,
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Are you questioning the lupus diagnosis? Technicially, with your symptoms, it does sound like you meet 4 or 5 of the criteria. Methotrexate is a good choice for either diagnosis... especially for controlling the joint pain.

I've read that boys of lupus moms have only a 1-2% chance of developing lupus and girls of lupus moms have about a 5% chance of developing lupus. So it's not a huge risk and certainly many children will have no autoimmune problems at all. Even if they do develop lupus, life with lupus (while obviously much more difficult) is still worthwhile and precious. That's how I rationalize it out at least for myself ;)
Hi Gabrielle, and welcome to this great site. You don't feel good, you are on the verge of being dx by a dr. with something, you don't know what, and you get told that you may have to live with it the rest of your life. All this in your face, and nothing is for sure??? This is crazy,insane,nuts.
This is your body, the only one you will get, ask your dr. any question you want, and as many as you want, and write down the answers, and don't stop until you get your answers. Be a pest, it's your body,your worth it.
Hello Gabrielle

I would ask to start on Plaquenil which is the first line oral med for lupus and is used in RA. It might mean less of the methotrexate which tends to have more side effects and of course to reduce the Prednisone which you shouldn't be on for longer than necessary.
Plaquenil has numerous beneficial side effects including being helpful for lung problems in some ways, like pleurisy, if I remember rightly.

It's usual to take folic acid along with the methotrexate, to help with side effects because it is folic acid depleting. Make sure urine has been tested.

I probably wouldn't push her about the SLE. Some people have SLE with RA as the main feature or a clear overlap when it's not all that easy to distinguish. So long as you are being treated effectively, it's best not to have a formal SLE diagnosis.

I doubt if there is a greater chance of your children having lupus than there is of them developing any chronic condition, god forbid, or having a serious accident or illness. I hope she is a better doctor than her cruel and misinformed remarks suggest.

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