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Posted 3/1/2013 1:42 PM (GMT 0)
Hi I'm new to this site and was diagnosed with lupus approx a year ago. I was tested with a positive ANA, my other serious symptoms include:

Sensitivity to Sun/Flourescent lighting
Joint Pain
Raynaud's syndrome
Hair loss
Headaches
slight Rash on cheeks

I was put on steroids and plaquenil for 3 months and all my symptoms improved significantly.

I then got transferred to a new doctor and my blood got re-tested and this time my ANA came back negative. For this reason my new doc has stopped all prescriptions and said I was misdiagnosed. A month or so later my joint pain got much worse and new symptoms occurred, still being refused of any medication. The doctor told me if I can't stand the pain I can buy any painkillers over the counter.

I have been wanting to change my doctor to get a second opinion but was afraid they might dismissed me all together because of my negative ANA.
I feel so helpless as my joint pain is getting so unbearable and I am eager to find out what is causing all these problems I have.

Any opinion is appreciated.
Posted 3/1/2013 3:41 PM (GMT 0)
Welcome to HW!

Your doctor is being hasty in removing your medications and dismissing your ANA - once you've been diagnosed with Lupus there should never be any going back.

Any way you can get back to the original Dr? If not, I would try to get copies of lab reports (if you don't already have them) showing the positive ANA (remember the number? it makes a difference) and also the full CBC that will show the inflammation markers in the blood.

Take these lab reports, including written info on the meds you were given and the positive results you observed from the meds, to another rheumotologist and get a second opinion. (Although, on second thought, is the current or former Dr a rheumy, I don't think you indicated? Rheumy is who really needs to be treating you.)

To make sure you find a rheumotologist who is up-to-date with Lupus, I recommend finding your local chapter of www.lupus.org and find which local Drs on the the advisory committee.

Best wishes,
Posted 3/1/2013 9:44 PM (GMT 0)
Make sure to get yourself some sun protective clothing. My rheumy is all for it for me. It really helps me.

My bedroom is lit with LED lights because even incadesent bulbs will bother me some. I also have heavy blinds on my windows because sun shining in my house will set off flares for me.
Posted 3/1/2013 10:56 PM (GMT 0)
Thank you for all the replies, I too have heavy blinds on all my windows but sometimes even the sunlight seeps through the small gaps in the curtain hurts my cheeks.

My original doctor returned to his country and so I got transferred to the new rheumy I am seeing right now. He has got all my previous records and is well aware that I tested with a positive ANA before.
I was told anyone can get tested with a positive ANA but that doesn't mean they have lupus, especially my ANA is now negative and therefore the refusal of medication.

Am I right to consider changing Doctors? or is this the norm?
Posted 3/2/2013 2:07 AM (GMT 0)
While not unusual, I wouldn't consider it the norm. There are many doctors on either side of the debate - ANA once or ANA always -- but in truth according to the Lupus Organization there is no one deciding factor in diagnosis and you can be diagnosed with any 4 of the 11 symptoms, where 1 is ANA. That means without even considering ANA if you have 4 of 10 possible symptoms you can be diagnosed with Lupus. Sometimes it depends on the prevailing attitude of the Dr you see.

If I'd been getting significant improvement, as you mentioned, with treatment that this Dr is not willing to provide, I would very definitely get a second opinion as soon as possible with a Dr who I knew for sure was active in a Lupus group.

So, YES, consider changing Drs. You can even get a second opinion without "officially changing". But when we start feeling poorly, and Drs aren't helping....of course we should go find help!!!
Posted 3/2/2013 2:08 AM (GMT 0)
Not the norm for a rhuemy saying you don't have Lupus when you've already been told you have it.
ANA will change but the other symptoms are important to consider. Have you seen the 11 indicators for Lupus list at lupus.org? I think you just have to score 5? (help my memory, Lynnwood)
ANA is one of the 11 indicators.

I'd find a new rhuemy ASAP. This one is not well versed.
Posted 3/2/2013 4:04 AM (GMT 0)
I would definitely get a second opinion.

Laura

Posted 3/2/2013 11:43 AM (GMT 0)
Thank you. I forgot to mention I was also being refused for any further blood tests, reasons being my blood test results came back fine when he re-tested me. Should I ask to have my blood tested at regular intervals to monitor any changes overtime?

Another question I have is although I understand the eye issues from Plaquenil are quite rare and I had only been on it for a few months (400mg per day before I got transferred), I asked the new Doc how would I know if I have any side effects to my eyes, he told me to go to any opticians and have my eyes checked out if there is no change to the eye sight then I'm fine.
Is this how everyone got their eyes checked for side effects?
Posted 3/2/2013 1:50 PM (GMT 0)
I am on Plaquenil and get my eyes checked regularly every six months.  I have been on this drug for almost 6 years and have not had any difficulty with it.

Laura

Posted 3/2/2013 4:28 PM (GMT 0)
NO, NOT opticians -- they are the ones who fit you for glasses, they do not know about eye diseases. You need an ophthalmologist -- they will know what you mean when you ask for a plaquenil screening (a visual field test). Also see www.sw-eng.com/plaquenil-eyes.html for more information.

This doc you are seeing is sounding worse and worse...RUN AWAY!
Posted 3/3/2013 12:38 AM (GMT 0)
I Like what Lynnwood sd! Run! I am so sorry u have to live w/ur symptoms and not getting any tx, that is really ashame. Plz, do not worry or be intimidated by this doc. Sounds like he possibly may have a bit of a God-complex....only his way is the right way? No, I think he should be a little more receptive to feedback fr his patients. I think everyone has given u great advice and take care plz.....
Posted 3/3/2013 1:28 AM (GMT 0)
Just a question?? Can you not have apositive ANA and when you are on treatment like plaquenil the ANA become negative due to the treatment? Seems like I have read that somewhere.
I would also look for a new rheumy.
Posted 3/3/2013 2:06 AM (GMT 0)
Thank you so much for all the replies and advices.
I wasn't aware that medication could change my ANA results, I will definitely find more info about it and bring to the doctor's attention when I visit the clinic next week and request a referral to another doctor.

I hope everything would go smoothly and the doc won't just dismissed me all together from the clinic.
Has anyone ever changed their docs and what's the best way to approach this issue?
Posted 3/3/2013 4:19 AM (GMT 0)
Oh, you need to go to a particular clinic and you must change doctors to another within the same clinical practice? In that case, I assume your insurance/financial situation is limiting you. In general, I have found that most Drs within the same practice have very similar opinions -- you may not gain much by switching unless you can go someplace separate from your current clinic.

Otherwise, to change Drs or get 2ond opinions you just make an appointment with another Dr and have your records released to them. Or, if you've only seen this guy once and you have copies of your records, don't even tell the existing place and just go see someone else. Nothing magically difficult about it. (At least I never had issues -- I guess some insurance programs might not like it?? I have no idea about that.)
Posted 3/4/2013 8:54 AM (GMT 0)
You can switch to anti-inflammatory medications and refer to some of the physical therapies that would suppress the joint pain.
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