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Old 08-17-2009, 01:26 PM   #1
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drewsmom HB User
Newly Diagnosed and Confused

Hi There!

I'm not sure if you all remember me, but I posted a while back about possibly having lupus. My only symptom being a rash that my son and husband also had. Because of this rash, I had a blood test done for inflammation and my DS DNA levels were slightly elevated. My PCP requested that I see a rheumatologist.

I finally met with the rheumatologist after a very long wait (over two months), and was diagnosed immediately. They gave me a complete physical, took my complete history, and determined that I had Lupus even though I didn't have any symptoms (the rash completely gone at this point and is unlikely related to lupus if all three of us had it). In fact the first doctor I spoke with said it was very unlikely that I had it based on that alone. The second doctor, however, diagnosed me with Lupus based on this research.

http://lupus.*****.com/news/20031015/body-shows-early-clues-for-lupus

They took more blood just to make sure that it was done accurately the first time, and said that if it came back positive this time that they would start me on plaquenil (sp?). I am a little nervous about this because of the negative side effects. I am legally blind in one eye, and am terrified of losing the sight in my other eye. I feel great, and am unsure of what to do. I would really appreciate any thoughts you might have.

Thank you!

 
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Old 08-17-2009, 08:25 PM   #2
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: Newly Diagnosed and Confused

Drewsmom, Dr. Wallace writes at length about how Plaquenil can affect the retinas. His main points are that damage is very rare when dosage is within prescribed limits, and also that the undesirable RARE build-up is *almost always* reversible if the drug is discontinued. His hardcover is in most librariers & larger bookstores.

His account is quite reassuring for many of us. BUT THAT SAID, because of your pre-existing problem with one eye, what sounds "good" to many might not sound good enough to YOU!!! If I were in your shoes, I'd first read what Dr. Wallace writes on the subject, then ask both your rheumie & eye doctor to review all pro's & con's with you, for however long it takes to cover all your questions and concerns. After all, no one deserves carefully parsed explanations more than you do!

I have a field vision test every 6 months. I've taken Plaquenil for almost a decade & have done fine on it. (But again, you're coming from a different place, and I do recognize that!)

When do you get the 2nd results back? Post updates when you can, OK? My father lost an eye to retinal cancer, so we all were full of questions when he had to start a new med, activity, etc. with any possible eye impact. (He also wore safety glasses, to protect his good eye from physical damage.) So I surely wish you GOOD LUCK in working thru your concerns. All best wishes, Vee

 
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Old 08-18-2009, 08:11 AM   #3
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drewsmom HB User
Re: Newly Diagnosed and Confused

Thank you VeeJ! I plan on getting Dr. Wallace's book soon. I can't seem to get enough to read on the subject. I also plan on seeing my eye doctor soon and discussing my situation. I've been blind in one eye (legally) since I was a little girl, and am very cautious of my good eye. I also wear a protective lens on my good eye. I was told the lens itself is like a bullet proof glass to prevent any possible damage to the eye.

I was wondering if it is normal to diagnose Lupus based on a blood test alone? My DS DNA levels were very low and having no symptoms, was expecting a battery of tests. I'm not in denial. If my doctor says I have lupus, then I have it. It's just weird because I feel fine. From everything that I have read, I thought it would take years to diagnose me and not on my first visit.

Again, thank you so much for your help!

 
Old 08-18-2009, 12:36 PM   #4
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Angel MJ HB User
Re: Newly Diagnosed and Confused

Quote:
Originally Posted by drewsmom View Post
...I was wondering if it is normal to diagnose Lupus based on a blood test alone? My DS DNA levels were very low and having no symptoms, was expecting a battery of tests. ...
hi drewsmom - welcome back! short answer is ... UNLIKELY that you would be dx on a single blood test ... and depending on the involvement neither would you need a battery of tests.

you need to meet 4 of 11 criteria (have you see the sticky posts at the top of the threads?) ... mostly it is symptoms and not necessarily at the same time. once you have had a symptom then basically you have checked that box ...
vee says it much better

my opinion is this is why a medical history is vital in the diagnostic process ... yes, dx can happen in a visit if your doctor is well *learned* in lupus (better expression escapes me) and the criteria are evident, bloodwork can support the dx but of course there are exceptions to every rule so not always ...

maybe speak to your doctor and ask him to explain the criteria he feels that you meet ... might help you better understand how he is dx ???

dr wallace covers all the bloodwork for lupus. bloodwork is only a part of a dx (a threshod test) it shows what is going on inside at that time and changes ... it hasn't been used as a sole diagnostic tool but rather as part of.

definitely raise your concerns with your doctor about the plaq and your eye ... maybe more regular monitoring and careful dosages you & your doc can find the optimum treatment plan

all the best & thanks for the update!
***hugs***

Last edited by Angel MJ; 08-18-2009 at 12:42 PM.

 
Old 08-19-2009, 07:29 AM   #5
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Re: Newly Diagnosed and Confused

Thank you Angel MJ! That is what I thought. I actually asked how she determined that I had lupus where I didn't meet the criteria, and she told me that she based it on the study done by the army (the article that I had posted above). Other than the DS DNA levels, the only problem I had was Raynaud's Syndrome (sorry I forgot to mention that earlier). She didn't feel that the rash I had was associated with Lupus because my husband and son also had it. She told me that the military pulled the blood results of all enlisted soldiers from 25 years ago and determined that the majority of those with slightly elevated DS DNA levels and no symptoms all ended up having lupus later in life. So that is why she diagnosed me. I'm wondering if all doctors will start to diagnose lupus based on this study.

Thank you so much for your help! I'm definitely going to see my eye doctor before starting to take the Plaquenil. Did I read somewhere that the generic brand has less of an effect on the retinas? I'm sure we will find the proper treatment plan!

Again, thank you so much! I'm sure I'll be posting often now that I have a diagnosis. I'm actually on here daily reading everyone's posts. It's like my bible! Thank you!

 
Old 08-19-2009, 10:11 AM   #6
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Re: Newly Diagnosed and Confused

Drewsmom, this is a really interesting question about low-level anti-ds-DNA without symptoms... Even in a single book, I saw varying "takes". On one hand, anti-ds-DNA is "rarely present" in people without SLE. On the other hand, healthy patients "occasionally" have low-level positive tests.

One also reads that the test itself is hard to perform accurately, so hopefully the 2nd set of results you're awaiting will shed more light. BTW, I think your rheumie was being thoughtful & prudent in running the test over...

Did your *standard bloodwork* or *urinalysis* show any anomalies?

Good luck! from Vee

 
Old 08-20-2009, 08:58 AM   #7
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Re: Newly Diagnosed and Confused

I know that my PCP didn't do an urinalysis. As for the blood work, all they told me was that my ANA levels were at 15 which they felt were high and my DS DNA levels were 6.4 which they said was a low positive.

I really liked the rheumatologist that I saw. She was very professional and thorough. I'm interested to see the results of my new blood work and urinalysis.

 
Old 08-25-2009, 07:20 AM   #8
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Alexa3 HB User
Re: Newly Diagnosed and Confused

Drewsmom, I'd get a second opinion, it is not the norm to diagnose someone right off the bat, especially with a negative blood test and no symptoms. It's very odd that she thinks it is lupus. I had a very high ANA every time they took my blood, and had 9 of the 11 criteria. First my Rheumy ruled our Rheumatoid before lupus, but by the second appointment he said it was Lupus, and this was with my history, several years of symptoms. Hair loss, chronic fatigue, pain in my joints, and with a flare-up it felt like my hips and knee's were on fire. I would ask your PCP for another referral to another Rheumy, one who will take his/her time before tagging you with lupus. Good luck!

 
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