[luvz2bmama]

Hello, I am new here and trying to get answers. I recently had blood taken for 3 diff tests. one said Ra factor test..one said sed rate test, and one an ANA test. Ok so I get the results and a copy of it as well...it said next to the ANA test - negative. I was happy seeing this might not be lupus. The ra factor test was high..it was a 68.6 when normal range being 0-12. The sed rate test was a 20 with normal range being a 0-20. The doc says I have RA..so he sends me to a rheumatologist. he takes lotsa blood and i get a call today saying. my LUPUS SLE test was postive along with again my RA factor..what does this mean and why just a few weeks ago my ana test was neg? is there some kind of lupus sle test that is done that is more accurate in seeing if you have it or not other than the ana? please help i am scared to death!! I also am a type 2 diebetic 43 years old.

 

[Pink Pearl]

Hi, and welcome to the board.
There are some of us who have never had a positive ana test. For those in the US you can get more specific into on blood tests here http://www.niams.nih.gov/
There are not a whole lot of us around who are ana neg, but we are out there. I have never had a positive ana, but have been positive to anti ds dna, acl, and a few more. While there are said to be a minority of us, I find it interesting that I've known many who are ana neg. I know a couple people who have both RA and SLE. I've wondered with more accurate testing, that perhaps these are seen more often due to that.

I understand fear of the unknown. With better treatments, the percentage of people who live normal life spans are growing daily. It may help you to put your fears to rest to keep a symptom journal and take pictures of rashes. Take these to your rheumy appts with you. Go over them with your rheumy and let him know you are scared. Keep track of any fevers you are having as well. If you are having pain, rate it on a 1 - 10 scale, and do this several times in a day. If you are having trouble sleeping, report that too.

There is life in, with, and through lupus. It is a different life, but it can be a good life none the less. Eat a healthy diet, rest, take care of yourself.

Daniel Wallace, MD, has written a book for lupus patients; The Lupus Book. This book has a lot of answers for the majority of lupus patients. Either check it out at your library or buy it. You will refer to it often as you begin your journey with lupus and treatment.
Let us know how you are doing.
Sally

 

[greenhaggis]

Hi and welcome to the site!

Do you have a follow-up with the Rhuematologist so that the recent blood results can be explained and a treatment plan started if required.

You say your RA factor test was high..has this been discussed further with your Rhuematologist!

I think you should perhaps ask for copies of your blood test so that you can see for yourself whats going on and keep for future reference.

I think before you get really stressed thinking you have Lupus you really need to contact your Specialist for expert medical advice.

There is no specific blood test for Lupus. ANA is the first line test used to check for auto-immune related diseases. ESR, CRP, Complements C3 and C4 plus Anti ds-dna are quite common ones when testing for auto-immune, plus all the other FBC, iron, liver, kidney etc.

Below link explains things better:
http://www.uklupus.co.uk/tests.html

There is one test that is named Lupus Antagulant, which is done for APS (known also as Hughes Syndrome), perhaps that was one that tested positive. Being positive for this does not mean you have Lupus! See this link for a better explanation! http://www.labtestsonline.org.uk/understanding/analytes/lupus_anticoagulant/test.html

http://www.uklupus.co.uk/lsymp.html This is a link to symtoms that people with Lupus may or may not have!

Take care and ask as many questions as you want!

 

[Clare.T]

Welcome to the forum

ANA levels can vary from time to time and they aren't reckoned indicators of disease activity. It isn't specific to lupus and is found in many other diseases and conditions at lower levels. But the important point is that once it is elevated further more specific testing should be done. Very often a negative ANA will rule out further testing and make diagnosis very difficult unless there is lots of weighty evidence for lupus or unless there are lupus related skin or kidney problems biopsy proven. So in a way it's good that this time something has shown up.

What sort of doctor have you been seeing? The RA factor can be raised in lupus and lupus variants and I wouldn't think a high RF is enough by itself to diagnose RA. There is a more sensitive test for RA anyway, called the CCP test. Some people have both RA and lupus. The thing is that some of the drugs most commonly used to treat RA are not indicated for treating lupus. These days RA is treated aggressively so if there's misdiagnosis there's a chance of RA treatment worsening the lupus and in any case not actively treating the lupus. Many rheumatologists don't know much about lupus. Maybe this doctor is correct and very competent and my reactions to the details you have given are unjustified.

I don't share the general enthusiam for Dr Wallace's book as a lupus primer, excellent as it is. It seems to me like recommending learning French by reading Jean Paul Sartre in the original.

I suggest reading the articles about diagnosis and testing on the info part of this site and asking here for explanations and personal guidance. Lupus affects people in so many ways and to differing degrees most of which will not affect an individual. Why try to learn about every single aspect of the disease and most complicated cases. Start learning about your own case. Information is empowering and reduces fear - it helps us to know what to expect in care and to set about getting as good care as possible.

With a bit of luck you will be among those whose lupus is relatively simple and who responds well to the many treatment options. Those people rarely post on forums. But things are likely to go much better with early diagnosis and effective treatment so the disease has as little impact on the quality or length of your life as possible.

Please keep in touch and let us know how you are getting on - we'll help you all we can with information, practical tips and general support

Bye for now and hugs


Clare

 

[cad]

Hi there,
I think it is understanable that you are scared.

You don't diagnose Lupus or RA down the telephone!!!!

I think bearing in mind how complex these test and diseases are and what it takes to make a diagnosis of either RA or Lupus ie. signs aswell as bloods it is imperitive for you that you contact your rhemy or gp to get your follow up as soon as possible to be put in the picture.

For example there is usually symetrical or bilateral swelling of the joints in RA with involvement of specific joints and prolonged morning stiffness, there are criteria list for lupus and RA available online.

This is the link to this sites page which shows the 11 point criteria for lupus for a minimumm of 4 must be fulfilled.

http://www.uklupus.co.uk/dxlupus.html

This is an exctract from wikipedia, I took this bit out as there was loads of info.

Diagnostic criteria
The American College of Rheumatology has defined (1987) the following criteria for the classification of rheumatoid arthritis:[9]

Morning stiffness of >1 hour most mornings for at least 6 weeks.
Arthritis and soft-tissue swelling of >3 of 14 joints/joint groups, present for at least 6 weeks
Arthritis of hand joints, present for at least 6 weeks
Symmetric arthritis, present for at least 6 weeks
Subcutaneous nodules in specific places
Rheumatoid factor at a level above the 95th percentile
Radiological changes suggestive of joint erosion

At least four criteria have to be met for classification as RA. These criteria are not intended for the diagnosis for routine clinical care; they were primarily intended to categorize research. For example: one of the criteria is the presence of bone erosion on X-Ray. Prevention of bone erosion is one of the main aims of treatment because it is generally irreversible. To wait until all of the ACR criteria for rheumatoid arthritis are met may sometimes result in a worse outcome. Most sufferers and rheumatologists would agree that it would be better to treat the condition as early as possible and prevent bone erosion from occurring, even if this means treating people who don't fulfill the ACR criteria. The ACR criteria are, however, very useful for categorising established rheumatoid arthritis, for example for epidemiological purposes.[citation needed]

I really feel for you and I just hope you can things sorted out as soon as possible. I agree with Claire too the test results can overlap illness' as can the illness' overlap eachother. Also you hopefully will have a good chance at respndong to treatment. I think the main point is to understand what the illess is so you can begin the appropriate treatment and fro thi you need to get back to have a consultation with your rheum.

I wish you all the best

Take Care

Cassie

 

[KarolH]

You have been given good advice here and there really is nothing I can add but I just wanted to welcome you to a great place. I hope you get some answers soon and glad you found this site.

Join us in the chat room sometime.