Journey in Trying to Establish A Lupus Diagnosis.

Presenter: Hannah Stanley
Guest: Theresa Juday
Guest Bio: Theresa Juday, who not only has lupus herself and has for right at 15 years, but is also a pharmacist and comes to this from a real place of medical knowledge.


Health Professional Radio – Establish A Lupus Diagnosis

Hannah Stanley: You’re listening to Health Professional Radio.  I’m Hannah Stanley, and today we are talking about lupus.  And joining me is Theresa Juday, who not only has lupus herself and has for … right at 15 years, but is also a pharmacist and comes to this from a real place of medical knowledge.  Theresa, if you could give us your version of you being diagnosed and going through that process, that would be great.

Theresa Juday: Thanks Hannah.  I have been living with lupus now for almost 15 years, and the diagnosis is very difficult, and for most lupus patients, they go through that type of an experience as well.  But I am fortunate.  As a pharmacist I have a little bit more working knowledge of the health care system than probably the average person.  So, I think I was able to be more of a vocal advocate for myself, but I started off with symptoms of developing a rash.

And unlike most lupus patient, who get a butterfly shaped rash across the bridge of their nose and their cheeks, I got the rash first on my scalp.  And it started with some thinning hair, which is a little bit more of an unusual symptom, and therefore making it even more difficult to get an accurate diagnosis.  So, I bounced around from several different physicians, the first few who really kind of tried to minimise my symptoms and attribute them to just that I wasn’t handling stress and it was really no big deal, even though I knew how I was feeling, because besides the rash I also had a lot of fatigue and joint pain.

So I knew that wasn’t normal and so I really pushed the issue.  I was finally able to get into a dermatologist, which is a little bit different, but who was very up to speed with how the [indecipherable 0:02:00] presented.  He had suspicions pretty early on, and so they did a biopsy of the rash, and that was really what started me on the path of finally getting the accurate diagnosis, was to be able to have the biopsy, have it come back as positive for at least a type of lupus, and that started my journey, which eventually led to a diagnosis.

I would say, all told, to get an actual accurate diagnosis, it probably took me about a year, which is small compared to what most lupus patients go through, which it could take them anywhere from three to five years before they actually get an accurate diagnosis.

Hannah: And that’s once they start addressing the symptoms, because what you are describing could have been something that you could have kind of brushed to the side or maybe had for a period of time.  Like thinning hair while you’re … you were younger, but some people might be in their 40s and 50s and think that that could be a symptom of menopause or something.  So, to have all of those present together – is that what actually got you to start drilling down and going, “Something’s just not right”?

Theresa: Yeah, yeah, that is exactly what happened.  I had always been a very Type A personality, so when I started to feel the fatigue, I really began to get concerned, because I’m like, “That’s not normal for me, that’s not how I am.”  It was not just “I’m tired,” it was truly a profound fatigue, to the point where you don’t even want to get out of bed.  It hurts; the fatigue is so bad it actually physically hurts.  So I knew right away something was wrong.

I didn’t suspect that it was lupus, that isn’t the first thing that popped into my head.  I thought maybe I had a thyroid problem, because sometimes that … those symptoms can be attributable to thyroid issues.  But I didn’t instantaneously think, “Oh, I have lupus.”  But I knew something was wrong.  That’s why I continued to push for a diagnosis.

Because the first physician that I saw didn’t think anything was wrong with me.  He was just like, “Oh, you’re just stressed and that’s how it is.  And you just need to learn to calm down.  And maybe we’ll give you some Valium,” which wasn’t … I was like, “No, that’s not right.”  So, that’s usually … when I am asked to talk to lupus patients, newly diagnosed lupus patients, or people who have come to the Lupus Foundation [indecipherable 0:04:29], not with a diagnosis but they suspect that they might have lupus, that’s one of the first things that I tell them – is that you have to be an advocate for yourself.

Only you know how you’re feeling and can describe those symptoms, and only you know what’s normal and not normal for you.

Hannah: Right, and because it–

Theresa: And if you truly feel that’s something’s wrong and your doctor is not listening to that concern, then the problem isn’t with you.  The problem is with the doctor, and you need to go find somebody else who will listen to your concern.  It may not be lupus.  It may not turn out to be that, but something is obviously wrong, and it’s too easy for many physicians who are not familiar with the symptoms of lupus and the fact that lupus symptoms tend to mimic other diseases – it’s too easy for them to lump those into an “other” category and assume that it’s something mild when it’s really not.

Hannah: And because it doesn’t always present the same way in everyone, if ever – it might never present the same in two different people – and because, as you just said, there are other diseases or things that could be wrong that do present … that are more common than lupus is.  And there’s not really a test that goes, “Yes, this is lupus” – or is there?

Theresa: No, there is not a single test that a patient can get done that would say you have lupus.  It’s not like diabetes, for instance, where it’s pretty simple at least to get a blood test that says, “Yes, you’re a diabetic.”  In the instance of lupus you can’t do that.  In order to have lupus diagnosed, there is a collection of about 11 different symptoms, and physicians should go through that list, and a combination of the symptoms and the blood work.

You have to have a minimum of four of any of those things in order to be diagnosed with lupus.  And that’s really what makes it so very difficult to diagnose.

Hannah: Now, can some of those ebb and flow, like one day you could have four and the other day you could have all of them?  Or is it you’re going to have the symptoms you have?

Theresa: No.  The symptoms can ebb and flow.  So, for instance in my scenario, I had the rash but the rash did start to resolve.  But usually the physician is trying to evaluate you for lupus, potentially for being lupus, they will look at a history of the symptoms.  So, it doesn’t have to say that you have the rash at that moment when you’ve been in the doctor’s office.  It could be, “I had that type of a rash within the last three months,” or “I’ve had bouts for the last six months of this profound fatigue and joint pains.”

So, they will look at the symptoms over the course of time, which again contributes to why it takes a while to be diagnosed – because they’re going to have to look at that full history in order to really accurately diagnose you.

Hannah: All right.  So, you do want to go to someone who will, one, listen to you and understand that what you’re saying is not located between your ears; [laughs] it is something that is actually wrong with you.  But it’s good to give them the most complete history that you’re able to provide and even go in with notes if you’ve been noticing things.

Theresa: Right.  You really should … exactly.  You really do want to be very accurate about your history, and for a lot of people, and women especially, we do tend to want to minimise things.  So, it was really hard for me to admit that my fatigue is as bad as it was.  I personally wanted to minimise that.  I personally wanted to say … didn’t even want to list that as a potential symptom.

But knowing that … going through all of the physicians that I did and knowing that the best way to get an accurate diagnosis is to give the best picture, you really have to … I really pushed myself to say, okay … actually list all of my symptoms, even if I wasn’t sure that it was symptom.  And so it’s very important for people who suspect that they might have lupus that they write it down before they go into the doctor’s office and really think about, “What are the symptoms?  What are things that I think have been symptoms over the last six months?  What has happened to me?”

Because someone might not say, “My hair was thinning.”  They might just think, “My mum and my grandma had thin hair, so that just must be me,” or, “Well, maybe the fatigue really isn’t that bad.  I don’t want them to think that I’m lazy.”  So, it’s very easy to fall into that trap of wanting to minimise them.  So, I usually recommend that people sit down and write down your symptoms or anything that you think is a symptom before you go to the doctor’s office and have that list with you, even if you think it’s really mild and not worth mentioning.

It’s very important to give your physician a very clear picture of what’s going on.

Hannah: And involve others, because there are things that I’ll forget that my husband will go, “Well, you did have that really bad headache for three days or something.”  And especially with the fatigue, because from you and I talking in the past, I know that these things – and you just said earlier that these symptoms can ebb and flow – someone could write off the fatigue as, “Oh, I think I had a little virus or I had a bug that kept me down for a few days,” but that’s not it.  This is – we put together with other things.

All right, Theresa Juday joining me, Hannah Stanley, here today.  We are talking about lupus.  I want to make sure we talk about current research and if there’s any new meds on the forefront because this is … it is an issue for people who have diseases that aren’t big, huge groups of people.  Talking about lupus with Hannah Stanley.  This concludes segment one of our talk with Theresa Juday, lupus patient and pharmacist.

Stay tuned for our additional segment with Theresa on Health Professional Radio.  I’m Hannah Stanley.

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