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Old 05-06-2008, 05:11 PM   #1
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healthnut HB User
OK to wait and watch for Lupus?

My bloodwork showed positive ANA, 80:640 homogenius (sp?) pattern, which suggests lupus. I have signs, such as rash around neck, trouble swallowing, (which could be from hyatal hernia);at times, achy thigh muscles and achy knees, just recently high blood pressure, slight fatigue occasionally. My internist doesn't see any of these, besides the positive ANA, as being symptoms of lupus, and wouldn't diagnose it himself. He would send me to a reumy dr. for that. He can do that if I want, but seems to think checking the ANA numbers and kidneys in 3 months, to keep an eye on it, is ok for now. My kidney blood work came back normal.
Do you think it is ok to wait and watch at this point?

 
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Old 05-06-2008, 11:43 PM   #2
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Re: OK to wait and watch for Lupus?

Quote:
Originally Posted by healthnut View Post
My bloodwork showed positive ANA, 80:640 homogenius (sp?) pattern, which suggests lupus. I have signs, such as rash around neck, trouble swallowing, (which could be from hyatal hernia);at times, achy thigh muscles and achy knees, just recently high blood pressure, slight fatigue occasionally. My internist doesn't see any of these, besides the positive ANA, as being symptoms of lupus, and wouldn't diagnose it himself. He would send me to a reumy dr. for that. He can do that if I want, but seems to think checking the ANA numbers and kidneys in 3 months, to keep an eye on it, is ok for now. My kidney blood work came back normal.
Do you think it is ok to wait and watch at this point?

 
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Old 05-06-2008, 11:48 PM   #3
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Re: OK to wait and watch for Lupus?

Go to the Rheumatologist!! I had almost the same scenario , one year ago. I want to a "jerk"rheuma. doc and he did nothing, now a year later... I'm at a new rheuma doc. and she's got me on Plaquenil (and said I should have been on it a year ago) doesn't know why the other doc did nothing...she said YOU HAVE LUPUS!!! Don't let your internist dictate your care, be an advocate for yourself, find a good specialist and go get checked out. Good Luck!!! Jen

 
Old 05-07-2008, 07:07 AM   #4
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Re: OK to wait and watch for Lupus?

No, I don't believe it is o.k. to wait and watch for Lupus given your test results and symptoms. That makes as much sense as blindfolding yourself and putting in ear plugs so you can go lay face down on a railroad track to wait and see if a train will come..No offense, but your intern is nor a Dr. who specialises in Lupus, and a Rheumy is. Even if it turns out not to be Lupus, the symptoms you are having sound pretty miserable, and you deserve treatment to alleviate them and answers as to what is causing them in the first place. As for your kidneys, it is great that they are o.k. for now, but Lupus effects many organs, many parts of your body, if you have it and you get treated quickly, the medications may help limit the damage Lupus does to you. Please seek additional testing for Lupus antibodies from a rheumatologist......... Remember, your internist doesn't have to live in your body, you do.

 
Old 05-07-2008, 02:36 PM   #5
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Re: OK to wait and watch for Lupus?

healthnut, Hi & welcome. I'm with the others! Sadly, I bet the average internist doesn't really know much about lupus. (He or she may *think* they do, but that's another story!)

Starting with the bloodwork you had done, while ANA in & of itself it NOT diagnostic of lupus (because it's positive in MULTIPLE diseases), it ought to raise a BIG RED FLAG & spur additional blood tests. Two blood tests are considered VERY diagnostic: anti-ds-DNA &/or anti-Sm. And there are others that raise the possibility but aren't as definitive, like anti-Ro, anti-La, anti-RNP, etc. Do you know if your dr. ordered any of these more specialized tests? Or did he quit after doing the ANA?

Then there's your rash. There are a variety of rashes that are specific to lupus. A skilled dermatologist, preferably one recommended by a rheumatologist, is your best bet. FYI, if you have a lupus-specific rash, that means you have *some form of lupus*. But note that there are various forms: discoid (DLE), subacute cutaneous (SCLE), systemic (SLE), and drug-induced (DILE). ALL require attention & care, and most people do benefit from medication.

Some people think, Well, it's only a rash. But "discoid" rashes can scar &/or depigment, and can even cause permanent bald spots if they affect the scalp. For that matter, ANY lupus rash is a sign of an underlying immune system dysfunction, and as such, shouldn't be ignored.

Kidney damage is NOT "required" to have lupus 40% of people with SLE (systemic lupus) have kidney issues, varying from profound to mild. By my math, that leaves 60% in SLE who don't!

I ran into the same inability to Dx with my local drs., so I went to a teaching hospital rheumie & got the help I needed. FYI, I've had swallowing difficulties, which can happen in people positive for anti-Ro (I was). Anti-Ro is seen in both Sjogren's syndrome & lupus, by the way.

Lupus is one tricky, ever-changing disease. So like the others, I think you should see rheumatologist. I hope you post updates when you can. Sending you my best wishes! Bye for now, Vee

 
Old 05-07-2008, 04:20 PM   #6
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Re: OK to wait and watch for Lupus?

Thanks for the replys. My internist has put me on different medications to treat what was bothering me. Blood pressure meds (which also helped this weird thing my heart was doing when I was just about to sleep each night.) Also prescribed the generic drug of Protonix for acid reflux and swallowing problem.

 
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