Lupus or RA what's the difference?The doctor cannot tell which I have.

[Julietsmombless2015]

Well I dont know about all of these different diagnoses and they all seem to be about the same symptoms.All I can say is it's confusing and I was borderline 1 week then the very next week my number jumped up to severe levels.Which was december.This even shocked my doctor himself .He redid the test 3 times they were all the same.I got a very odd diagnoses and its very unclear.He said after the plaquenil started working and my number fall some, I'll fall into a category of severe RA or Lupus. But because I have the lupus rash and serious Gi problems that he thinks lupus.He said it is probably linked to me being part native American why the numbers are so high tho I have only met european people with lupus so far.

[Waulahn5]

I am neither Caucasian European nor do I have any native American blood in me but I do have lupus. And when I go to rheumy clinic I meet lupus sufferers from all different ethnic backgrounds age and gender. So I don't know why your doctor seems to think it has something to do with your ethnicity. Good luck for future.

[Julietsmombless2015 in reply to Waulahn5]

He said it mostly occurs with people of color asian and native are more prone to getting lupus.I know everyone else I know is all european.

 

[misty14]

Hi julietmombless

The difference between RA and lupus is how the inflammation affects the joints. In RA it is damaging and antibodies show up in bloods for RA.

Lupus it is non damaging, but can affect tendons and can be harder to detect in bloods. Lupus can mimic RA just to make things harder for patients and consultants!. 

hope that's helpful

MistyX

[Julietsmombless2015 in reply to misty14]

That definitely helps because I'm waiting months for my number to drop and fall into a category.But I tell everyone my achilles tendons especially feel like they are wound up so tight I cannot bend my foot and it hurts to walk.That's exactly what i say it feels like all my tendons are very tight my hand feet toes fingers everywhere.Nobody else has ever said this to me and I felt crazy when I thought somehting is wrong with all my tendons.My doctor didnt explain much.He pretty much said your numbers are very high but its a good thing you are still walking.And we will know more in 2 more months.Sense I cannnot remeber anything at all i have to call today to see when the appointment is.I uise to be really good at just remembwering eveyrthing.

[Janet28]

Hi Juliet,

 yes you are right when you say all of these autoimmune deseases are all very much interlinked and have a lot of similar symptoms but there is a few sure signs as well and if you have the butterfly lupus rash I would think that its Lupus.

As Misty says it can be confusing with bloods. There is also a very good NHS symptom checker on line, just Google & it will come up.

May give more of an idea of the different symptoms between them all.

My friend has just been told she has Viral Arthritis in her hands, never heard of that before.

I did also read that African Women are 3 x more likely to get Lupus, apparently they get it at a younger age according to Google also Asian, Latino, Native American..don't know why that is. 

I think I've been diagnosed with so many different things over the years, I'm surprised I'm still here lol

Peace, Luv n light

Jan x

[Julietsmombless2015 in reply to Janet28]

I'm so with you on that surprised I'm still here.I keep thinking they are going to say its some aggressive horrible thing that won't go away,I havent had good luck with my health since AI was 14 yrs.So 16 yrs.

[Janet28 in reply to Julietsmombless2015]

Exactly same and I had brain tumours cos kept getting headaches lung cancer when I had chondritis,  or there was something wrong with my heart or I had Parkinson's when I kept having muscle spasms and cramps etc. 

 I really have gone through everything in my head what I could possibility have because all this pain I'm in and been in for years is Fibromyalgia and Arthritis. I spose iv learnt to live with it now and had to except it but it's hard work some days.

I always say with working that I already have a full time job trying to get comfortable and keep the pain at bay lol but it's true ☺☺☺

[vaderviper]

Have your Dr. perform a DS-DNA blood test which is specific for Lupus.

Dr. S. (in USA)

[Julietsmombless2015 in reply to vaderviper]

He said a bunch of number I did not understand he spoke quickly and said it was either severe RA or lupus and we will know more when your number reach a more normal point.And he added he is glad I'm still walking and he understands by my inflammation numbers I must be in a lot of pain.I have the butterfly rash it has went away since Ive been wearing a baseball cap whenever I'm in the sunlight.

[vaderviper in reply to Julietsmombless2015]

Never heard of getting a 'butterfly' rash with RA.

Dr. S.

[Julietsmombless2015 in reply to vaderviper]

You dont its a tail sign of lupus alone which is why he said"I'm leaning towards lupus but will not know until more test are done.Its called lupus now and its a certain kind.He said there is several and they are are so alike and treated the same.

[vaderviper in reply to Julietsmombless2015]

Thanks for your explanation, but having 4 years of medical school and then a 6 year residency and 1 extra year to become Fellow" in my specialty, I thought my stand alone statement was quite clear.....a butterfly rash is not an indication of RA......only (possibly) Lupus. You are correct when you say there is more than 1 type of Lupus..........there are 3: Systemic Lupus, Discoid Lupus and CNS Lupus, the majority of Lupus patients have 1 type (Systemic Lupus).

Dr. S

P.S.  I read your entire initial statement that's why I gave you a 1 line response. I wasn't trying to be critical of your Dr., I just wanted you to have a better understanding by saying a 'butterfly' rash is not an indication of RA. The only other 2 diseases that you may get a butterfly rash is with rosacea and sebhorreic dermatitis.  Hope I made myself more clear.

[Julietsmombless2015 in reply to vaderviper]

Yes all of the doctors have said lupus, even before the test came back positive.Because of my syptoms of the rash, brittle nails ,tight tendons.But they would not label it until the test came back of course.They redid the test also 3 times,which my insurance is now charging me for.300 for each extra test that all came back the same.I guess doctors do not want to give such a diagnoses to someone without knowing for certain.For instance this rash I thought was adult acne for 8 years or so as long as I have been sick.I never had acne as a teenager and this always baffled me.I would think"why do I only get it when i'm sick like this ?I saw the dermatologist  many years ago said "it was adult acne, years ago and gave me steroid cream/lotion to use .It never worked of course.After being on plaquenil for 3 months now my face looks smooth and perfectly clear.I dont have not 1 red mark or flaking it was dry skin on top of dry skin then a red rash very visible.It bothered me as I was and am so clean I washed my face twice a day tried every acne creams washes they would just dry it out more,Glad I'm finally diagnosed tho.

[vaderviper in reply to Julietsmombless2015]

Sorry for all the run around you are getting. There is only one specific test for Lupus....that is a DS-DNA (double stranded DNA). In the USA, the lab I use states any number below 4 means is it negative for Lupus......over 4 it is positive for Lupus. There are many various symptoms of Lupus: Excessive fatigue, headaches, face rash, joint pain/stiffness, Raynauds syndrome, anxiety, sensitivity to light, water retention, blood in urine, weight loss, anemia (called anemia of chronic disease....do NOT take iron supplements for this type of anemia...can make it worse!), fever, dryness/and or ulcers in the mouth and possibly hair loss. As you can see one can have only 1 symptom or multiple symptoms.....that is why it can sometimes be difficult to diagnose. Some people even have a negative ANA (unusual, but possible)......that is why I always include a DS-DNA to rule out Lupus or to give me a diagnosis of Lupus. I always send my patients to 2 different labs to have a DS-DNA test if I am pretty sure it is Lupus. I like confirmation rather than rely on just 1 lab.

These are the lab tests I run if I suspect Lupus:

CBC

ESR

Kidney and Liver function test

Urinalysis

ANA (3% of people will show a negative ANA even though they have Lupus)

DS-DNA

CRP

All the above test, ALONG WITH YOUR SYMPTOMS enable a Dr. to make a diagnosis of Lupus.

Good Luck.

Dr. S

P.S. ALL people with Lupus should be on Plaquenil....it is a mainstay drug as it can help to prevent other problems due to Lupus such as a vasculitis etc. It has been shown that people with Lupus that are on Plaquenil tend to live longer than those not on Plaquenil.

[Julietsmombless2015 in reply to vaderviper]

Well I would say my Doctors are doing  a great job. Cleveland clinic thought I was insane.They said "you seem depressed.And would try massive amounts of valium and antidepressants.Of course I'm depressed I have lupus.So anyways I switched new Doctors, hospitals and was diagnosed within 3 months.Which compared to cleveland clinics 15 years with no diagnoses is very welll i would say. I have been on SSDI for 7 years with no diagnoses ,but almost every symptom you listed above and more!My old Doctor said"I do not know what to do with you anymore you seem to have too many problems.I replied"yes I do and I am switching to St johns to find out what these problems are, because they sure are not in my head.I told her to fax all my stuff over to a new DR Sayed PCP and he knew what I had my second visit because he actually listened to his patients voice.

[vaderviper in reply to Julietsmombless2015]

Unfortunately Lupus is not quickly diagnosed, most often it is years before a patient receives the diagnosis. It is a sad fact, but true, many doctors do not listen to everything their patients complain about. I am horrified and disgusted by how many doctors, when they don't know the answer to a patients problems will throw out the term, hypochondriac, depression, anxiety. Any person with a long term medical problem will most likely be depressed (THAT IS NORMAL) and anyone that tells me they are not depressed from their illness just doesn't realize they are. I learned early on to listen to my patients.......hear ALL their complaints and symptoms and only then attempt to rule out what you can and then put a potential diagnoses of the  possibilities. Many times I will refer out to a specialist (or more than 1) to help me end up with the proper diagnosis.  When a person is suffering and gets no answer from their doctor, it is time to move on to another doctor. Like any other profession, some doctors are better than others. I am glad you moved on and finally got your diagnosis. It is often much easier to live with a disease when it is given a name. Proper help and treatment can alleviate many of your symptoms.

I know medicine has changed today as compared to when I practiced. Now the insurance companies almost control how doctors practice, they make it difficult to perform many of the necessary tests and often refuse to pay for the newer more expensive drugs........even though they work better. It has become a sad day when doctors can not practice medicine the way they were taught, they are now under constraints put on them by the insurance company.  When I practiced the vast majority of doctors went into private practice, today 70% of graduating doctors work for a hospital. Now the hospital dictates how they practice. How sad!

Dr. S

[Lisacp in reply to vaderviper]

I have Sarcoidosis and get the butterfly rash. I also was told I might have lupus, but the sarcoid mimics lupus, so that was why I have all the same symptoms as it. Is this true? I've also just been diagnosed with stage 3 chronic kidney disease, kinda wondering if you can have lupus AND Sarcoidosis?

[kimc]

I had biopsies for my rash and blood works, the biopsies showed I have lupus.

[kittykat68 in reply to kimc]

Snap so did I kimc, but juiletsmum2016 is American I believe? And they fo things different to us,they are more lupus aware x

[Julietsmombless2015 in reply to kittykat68]

They did not biopsy my face at all but after being on plaquenil for 3 months the rash disappeared on its own.I still have all the same pains.but I think the medication it doing somehting I see in my face/skin and nails .