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Old 11-12-2009, 06:35 AM   #1
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Lupus questions

Hi,

my rheumatologist suspects I have lupus based on my symptoms. The only thing is, I have a negative ANA but my ESR is very high. He's run some more bloods and repeated ANA so maybe they'll give some more answers. Even though my ANA is negative, he still thinks I have lupus. Has anyone else been diagnosed with negative ANA?

Also, forgive my ignorance but is lupus a form of arthritis?

Thanks v. much.

 
Old 11-12-2009, 06:57 AM   #2
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Re: Lupus questions

Princess, welcome to the group. There is a rare form called Ro-lupus, in which anti-Ro is positive but ANA stays negative. Yes, lupus very often brings arthritis---but, alas, it can bring MANY other things, too. See the "sticky posts" at the top of the thread list for basic "starter info". Hope you post more soon. Best wishes, Vee

 
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Old 11-12-2009, 08:08 AM   #3
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Re: Lupus questions

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Originally Posted by VeeJ View Post
Princess, welcome to the group. There is a rare form called Ro-lupus, in which anti-Ro is positive but ANA stays negative. Yes, lupus very often brings arthritis---but, alas, it can bring MANY other things, too. See the "sticky posts" at the top of the thread list for basic "starter info". Hope you post more soon. Best wishes, Vee
Thanks. I heard that 95-98% of people with Lupus are ANA positive, so I spose I could be in that small percentage?

I got confused b/c my rheumatologist wrote to my GP saying he strongly suspected lupus (I have a lot of lupus symptoms, apparently) and suspected inflammatory arthritis (I'm going for a bone scan tomorrow), I didn't know if they were the same thing.

 
Old 11-12-2009, 08:31 AM   #4
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Re: Lupus questions

I have lupus and fibromyalgia. Years ago I was tested for lupus and I did have a positive ana. But if your dr. didn't tell you, you sometimes have to have the ana test several times before you get a positive ana. I also had a problem with my kidneys and it showed up on some test the dr. gave me, I was sent to a Rhematoligist Dr. ..... who did nothing...he told me to go home an take some tylenol....he never mentioned my kidneys,and acted like I was pretending to be sick... thats something that I never under stood. I just want you to know that there will be Alot of people, even drs. that will not believe you an your long list of painfull symptoms. Is Lupus alot like Arthritis ?....Yes...

 
Old 11-12-2009, 08:36 AM   #5
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Re: Lupus questions

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Originally Posted by donnag2558 View Post
I have lupus and fibromyalgia. Years ago I was tested for lupus and I did have a positive ana. But if your dr. didn't tell you, you sometimes have to have the ana test several times before you get a positive ana. I also had a problem with my kidneys and it showed up on some test the dr. gave me, I was sent to a Rhematoligist Dr. ..... who did nothing...he told me to go home an take some tylenol....he never mentioned my kidneys,and acted like I was pretending to be sick... thats something that I never under stood. I just want you to know that there will be Alot of people, even drs. that will not believe you an your long list of painfull symptoms. Is Lupus alot like Arthritis ?....Yes...
That's horrible that they treated you like you were pretending.
I'm very lucky, my drs have taken my symptoms seriously and are just trying to work out what's wrong. I had no idea it was MAYBE lupus, until he mentioned it. I'll know more after my bone scan and when I get the results of my latest blood tests at my next rheumatology appt. I'm inpatient though and I just want answers. My head is spinning.

 
Old 11-12-2009, 08:51 AM   #6
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Re: Lupus questions

Princess, Do you know what they are looking for in the bone scan? I also had a bone scan. My GP was looking for something as I have been complaining about pain in several joints. The results came back saying, "arthritis in bilateral shoulders, bilateral elbows, bilateral wrists, bilateral hips, bilateral knees, bilateral ankles, bilateral 1st MTP joints. Also in cervical and lumbar spine. With that result she sent me to a Rheumie who just dismissed the whole thing as I had normal range of motion. My GP has put me on Celebrex 200mg twice daily. My kidney function (GFR) has gone from 93% last May to 74% a month ago to 67% this month but still no answers. I had a negative ANA. I would love to hear what comes of your bone scan as I don't know of anyone else that had one and I would LOVE to hear what is done about it. Good luck to you.

 
Old 11-12-2009, 09:06 AM   #7
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Re: Lupus questions

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Originally Posted by hopalong_too View Post
Princess, Do you know what they are looking for in the bone scan? I also had a bone scan. My GP was looking for something as I have been complaining about pain in several joints. The results came back saying, "arthritis in bilateral shoulders, bilateral elbows, bilateral wrists, bilateral hips, bilateral knees, bilateral ankles, bilateral 1st MTP joints. Also in cervical and lumbar spine. With that result she sent me to a Rheumie who just dismissed the whole thing as I had normal range of motion. My GP has put me on Celebrex 200mg twice daily. My kidney function (GFR) has gone from 93% last May to 74% a month ago to 67% this month but still no answers. I had a negative ANA. I would love to hear what comes of your bone scan as I don't know of anyone else that had one and I would LOVE to hear what is done about it. Good luck to you.
On the form, it's stated that the reason for the scan is......to examine extent of inflammatory arthritis. Did you have the radioactive injection? I'm sorry it was dismissed by a supposed specialist, maybe you should have a 2nd opinion?

I have my scan tomorrow and I get the results next Friday (20th).

 
Old 11-12-2009, 10:54 AM   #8
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Re: Lupus questions

Yes, that was the reason for my scan as well. I have it here. It was called "Whole Body Bone Scan (30mCi Tc-99m MDP)". It was the nuclear bone scan. Good luck with yours. I will check back to see what happens.......

 
Old 11-20-2009, 07:03 AM   #9
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Re: Lupus questions

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Yes, that was the reason for my scan as well. I have it here. It was called "Whole Body Bone Scan (30mCi Tc-99m MDP)". It was the nuclear bone scan. Good luck with yours. I will check back to see what happens.......
The scan was absolutely fine. I got the results today. I have inflammatory arthritis in my hands, wrists, feet and ankles. I'm being started on hydroxychloroquine. Lupus was suspected but ANA is negative, I'm still waiting for the more blood test results because they tested for lupus anticoagulant. However, my rheumy thinks it's more likely I'm in the early stages of RA. Some inflammatory markers are high (ESR is very high) but my rheumatoid factor is negative.

 
Old 11-20-2009, 08:16 AM   #10
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Re: Lupus questions

Princess, hi. Sorry to read that your scan detected inflammatory arthritis in multiple joints... but glad you're starting hydroxychloroquine (generic Plaquenil). I've done well on it & hope that you do, too. Did your dr. tell you that it can take 3-4 months (or maybe more) to reach full effect?

I hope further results allow your rheumie to come up with a more specific dx, meaning RA, lupus, MCTD, etc.

FYI, negative ANA is possible in lupus, but it's apparently quite rare, something like only 3% to 5% of cases, I was told. These lupus patients stay ANA-negative but test positive for the "anti-Ro" autoantibody, so it's called "Ro-lupus". (I learned this the hard way. But my path to diagnosis was bloodwork & skin biopsy; I never had a bone scan.)

Let us know how you're doing, OK? Sending you my best wishes! Vee

 
Old 11-20-2009, 10:28 AM   #11
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Re: Lupus questions

That is great news Princess. Now that you have started with a med, you are on your way to feeling better. I am wondering if the Rheumy I saw dismissed my bone scan results because they said "arthritis" and not "inflammatory arthritis". Or did I just get a Rheumy who didn't care?

Good luck to you!

 
Old 11-20-2009, 12:56 PM   #12
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Re: Lupus questions

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Originally Posted by hopalong_too View Post
That is great news Princess. Now that you have started with a med, you are on your way to feeling better. I am wondering if the Rheumy I saw dismissed my bone scan results because they said "arthritis" and not "inflammatory arthritis". Or did I just get a Rheumy who didn't care?

Good luck to you!
It sounds like your rheumy wasn't great at all. Can you get a second opinion?

Thank you. I'm feeling a bit more positive about the future, knowing it's going to be treated.

 
Old 11-20-2009, 01:00 PM   #13
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Re: Lupus questions

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Originally Posted by VeeJ View Post
Princess, hi. Sorry to read that your scan detected inflammatory arthritis in multiple joints... but glad you're starting hydroxychloroquine (generic Plaquenil). I've done well on it & hope that you do, too. Did your dr. tell you that it can take 3-4 months (or maybe more) to reach full effect?

I hope further results allow your rheumie to come up with a more specific dx, meaning RA, lupus, MCTD, etc.

FYI, negative ANA is possible in lupus, but it's apparently quite rare, something like only 3% to 5% of cases, I was told. These lupus patients stay ANA-negative but test positive for the "anti-Ro" autoantibody, so it's called "Ro-lupus". (I learned this the hard way. But my path to diagnosis was bloodwork & skin biopsy; I never had a bone scan.)

Let us know how you're doing, OK? Sending you my best wishes! Vee
Thank you, no he didn't tell me that. Well, he might have done but I had a lot to take in!

My rheumy did say that some people have ANA negative lupus. I'm waiting for results from lupus anticoagulant, is that what you mean by anti-Ro autoantibody?

ETA: I checked my blood test results and;
Anti-cardiolipin antibodies
Negative to Ro


Does this mean I definitley do not have lupus? If the lupus anticoagulant comes back positive, could I still have lupus? This is really confusing

Last edited by princess25; 11-20-2009 at 02:12 PM.

 
Old 11-20-2009, 02:47 PM   #14
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Re: Lupus questions

Princess, I think anti-Ro & lupus anticoagulant are different & mean different things. I'll describe how I perceive them---as a patient, that is---meaning your dr. is a professional who can explain much better! Also, you could ask for copies of your new results when they come in, to see which tests were run & have a hardcopy of the results.

Anti-Ro attacks cell cytoplasm. I know tt's seen in lupus (some, not all patients) and in Sjogren's Syndrome (many but not all patients). I'm not sure whether it pops up in anything else, though (sorry).

Lupus anticoagulant, antiphospholipid antibodies and *false-positive* syphilis tests are all indicators of a possible blood clotting disorder. Because this blood clotting problem is seen in so many people with lupus, having even one of these three is considered meeting one criteria for a diagnosis of SLE. (Generally you must meet at least 4 of the 11 SLE criteria, not necessarily all at once.)

There's a "sticky" (permanent info post) on antiphospholipid syndrome at the top of the thread list that provides more info. There's also a "sticky" with the SLE criteria. (All the stickies have good info, so you should browse all.)

There. Clear as MUD, huh? Do try those "stickies". They're short, which is a good way to approach a complex subject, in small bites. Hang tough! V.

 
Old 11-21-2009, 08:54 AM   #15
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Re: Lupus questions

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Originally Posted by VeeJ View Post
Princess, I think anti-Ro & lupus anticoagulant are different & mean different things. I'll describe how I perceive them---as a patient, that is---meaning your dr. is a professional who can explain much better! Also, you could ask for copies of your new results when they come in, to see which tests were run & have a hardcopy of the results.

Anti-Ro attacks cell cytoplasm. I know tt's seen in lupus (some, not all patients) and in Sjogren's Syndrome (many but not all patients). I'm not sure whether it pops up in anything else, though (sorry).

Lupus anticoagulant, antiphospholipid antibodies and *false-positive* syphilis tests are all indicators of a possible blood clotting disorder. Because this blood clotting problem is seen in so many people with lupus, having even one of these three is considered meeting one criteria for a diagnosis of SLE. (Generally you must meet at least 4 of the 11 SLE criteria, not necessarily all at once.)

There's a "sticky" (permanent info post) on antiphospholipid syndrome at the top of the thread list that provides more info. There's also a "sticky" with the SLE criteria. (All the stickies have good info, so you should browse all.)

There. Clear as MUD, huh? Do try those "stickies". They're short, which is a good way to approach a complex subject, in small bites. Hang tough! V.
You explained it perfectly. I understand. Thank you so much.

 
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