[jennylynne]

Hi All,

I'm new to this forum as I was just diagnosed with 'mild lupus' today - there was a lot to talk about with my consultant and so little time - as always. It wasn't until the consultation was over was that I wondered what she meant by mild Lupus. I'd had 16 blood tests done at her clinic a month ago - so I suppose something showed up there maybe.

I was diagnosed with APS or Hughes syndrome 7 years ago and had a stoke in May this year - this why I was seeing a consultant at the Lupus Clinic. So I was surprised when she was dictating a letter to my GP saying I was diagnosed with CNS Hughes syndrome and mild Lupus. But there was no time left ask her about this.

I'm left with questions and wondered if anyone here could shed some light. How is mild Lupus diagnosed, what are the symptoms and does it ever turn into SLE?

Would be grateful for any thoughts!

best wishes to all
Jenny

 

[Katharine]

Hello Jenny and welcome,

Mild lupus is an extremely irritating term. If the consultant said lupus, I presume she means that you have SLE unless you have reason to believe it could be discoid. Mild lupus simply means that there is no organ involvement. It doesn't mean that you don't hurt all over and it can affect people terribly.

So, basically, "mild" lupus is diagnosed in exactly the same way as SLE because it is SLE (without major organ involvement).

Have you already been started on additional medication to help ease symptoms?

I hope that helps a little,

Katharine

 

[kcmmem]

to you

Mild Lupus, i believe is SLE. It just means that you are in early stages and/or have not had any major events such as Kidney, heart, or lung damage. There are specific labs the doc will run but Lupus is kind of diagnosed through exclusion. Once they have excluded other things, they diagnose you. I also have APS. I have a positive lupus anticoagulent and have had several miscarriages but no dvt's. There are many symptoms such as fatigue, widespread pain, joint swelling and pain and many, many others.

 

[Katharine]

Just another thought, as far as I know CNS Hughes syndrome doesn't exist. Are you sure she didn't say you had CNS involvement with your lupus?

Katharine

 

[jennylynne]

Many thanks Katharine,

Your explanation makes a lot of sense. No, I don't have discoid lupus and yes, she did re-new my plaquenil prescription. The prescription had lapsed because my GP couldn't understand why I was taking it. And I thought it was just for various skin complaints like bad reaction to sun and insect bites. I think it helps reduce inflamation generally and aches and pains.

thanks for your speedy reply
Jenny

 

[Katharine]

Well, I'm glad you were put back on plaquenil - What was your GP thinking? Mind you, I suppose if you didn't have a proper diagnosis...

Plaquenil is a disease modifying medication It should help with joint pain as well as skin issues and also tiredness. It will also reduce the frequency and severity of any flares you might have and generally help control the disease.

As I'm sure you already know it takes a long time (months) to work fully. Hopefully, if you weren't off it too long, it won't be totally out of your system.

Katharine

 

[jennylynne]

Hi again,

No I'd never heard the term CNS Hughes before - the clinic kindly has a policy of sending a copy to patients of the consultant's letters. I'm fairly sure she didn't say CNS Lupus - and don't think I had the tests that could establish that. Must be a new term meaning Hughes with arterial clots rather than DVTs.
Jen

 

[jennylynne]

Hi KCMMem,
(sorry if I gat that wrong!) Thanks so much for your reply.
I'm so sorry to hear about your miscarriages - did you go on to have babies after treatment? Sadly it was too late for me once I was diagnosed - but I do now have 4 wonderful house bunnies.

My illness started in 1972 with thrombocytopenia - which then was thought to be a bizarre reaction to a sore throat. So, I suppose I hopefully won't ever go on to have SLE with organ damage. But at least now they've diagnosed lupus - my consultant will be alerted to possibity and keep an eye on it for me.

best wishes
Jen

 

[kcmmem]

No, I have not had any successful pregnancies. At least now I know that whenever I do get pregnant, that I can go on Heprin to hopefully carry long enough to deliver. It scares me though. I am on a great birth control, but I still get paranoid that i am going to get pregnant and not know it and miscarry again. I am always buying pregnancy tests. It is silly

 

[cath]

Hi Jen,

Welcome to the forum. I'm sorry about your diagnosis, but it is a good thing you are being well treated.

I suspect that what the rheumatologist meant by 'CNS APS' is that because of the stroke, the APS has caused a clot in your central nervous system/brain. It is just specifying where your last clotting problem happened. Obviously it needs to be taken seriously. What anticoagulation therapy are you on now? Do you have residual damage from the stroke?

All the best,

X C X

 

[jennylynne]

It's great that when you're ready you can make sure you get the right treatment. It's wonderful that the success rate with treatment is now around the normal success rate, isn't it?
I can understand the buying of the pregnancy tests!
Best wishes
Jen

 

[jennylynne]

Hi Cath,
Thank you for your welcome - I like this forum a lot. I have a lovely lively rabbit called Cath. She's white and black, loving and naughty.
I'm on Warfarin (only because I told the A&E and hospital doctor that with Hughes and a stroke that would be the right treatment - I didn't get to se a doctor who'd heard of Hughes for 3 months!). I was/am scared of Warfarin but it helps to lift the Hughes 'brain fog' so much that I'm warming to it. At times, on Warfarin, I feel better than I have for years.
I have only small 'left overs' from the stroke. I can't use tin-openers. Some might think that's a good thing! There a a few little things like that - but I was very lucky that most of it (paralysis) passed fairly quickly.
My spelling is worse (had to look-up how to spell paralysis) - or maybe it always was bad and the stroke lead me to notice it more! So, I'm still re-learning and findings ways round my deficits. I'm still working but reduced to part-time.
Thanks for asking,
Jen

 

[LolaLola]

Dear Jenny, Just wanted to welcome you here.
When you see a Consultant do not move your bum off the seat until they have answered your questions. Take in a list, no good Consultant will mind that. Although one (female) Consultant snapped at my Daughter who also has Lupus and APS, "if you are so bothered by your symptoms, how come you can't remember without reading them"- I am afraid we parted company with her.
My Consultant Dr. D'Cruz never minds notes or symptom lists. I am afraid I even take a small notebook when I see my GP.
x Lola

 

[Joandublin]

Hi Jenny

Welcome to the Forum. Im very sorry to hear about your stroke but its great that you have recovered so much from it. Well done!

I just wanted to chip in on the term 'mild lupus'. For a lot of us around here its an irritating term to hear because it sure doesnt feel 'mild' at the best of times. Its merely some doctors way of saying that there is no major organ involvement at this time. It certainly doesnt mean that the disease shouldnt be treated and monitored vigorously.

Stick around here Jenny. There is a wealth of advice and support from people all round the world who are battling this disease - many with multiple autoimmune disorders as well like yourself.

Clare T just posted a link on the Lupus Research and Awareness Forum which shows evidence that Plaquenil may contribute to preventing kidney damage in patients with Lupus so you might want to bring this to your GP's attention if you feel like it Heres a link to the article

http://www.docguide.com/news/content.nsf/news/852571020057CCF6852574F100644680



If you need any advice or information on the medications you are taking, feel free to post on the Medications Forum and someone will be along to help. In the meantime, welcome again and I look forward to getting to know you better.

Take good care
Joan:rose:

 

[Raglet]

CNS involvement with Hughes/APS is VERY possible - stroke itself is a cns event, and given that you have had a stroke I am not surprised that your doctor is describing your Hughes as having cns involvement. This makes total sense.

I have some cns problems with my hughes/APS (including past stroke) but my major brain problems are caused by my cns lupus.

I definitely feel a lot better when my inr is in range, and if I get foggier than usual one of the first things I do is check my inr. For me it has to be over 3.2 else I get migraines.

Mild lupus generally means lupus that does not involve the organs. The doctor likely meant sle, but there are a few other varieties of lupus that me could have meant (discoid or sub-acute). But chances are he meant sle.

nice to meet you

raglet
who also has lupus and APS/hughes.

 

[Surferboy]

Hi, please do not be be allowed to have a rhumy tell you not to worry about "mild" sle. Chase them up for any meds that you really should be on.

I also was diagnosed with "Mild Lupus". And when first diagnosed was told by one rhumy that because it was "extremely mild" there was no point in putting me on any meds - ie Plaquenil.

But then another Lupy saw me and following an eye test put me on Plaquenil.

But then, just as I reached the 1 month mark, she took me off the Plaq!

Now, my "extremely mild" lupus no longer feels that way. Joint pains, blurred vision, severe fatigue, shakes etc

 

[Clare.T]

Welcome Jen!

I'm sorry about this new diagnosis but it might be acknowledging a fact already rather than some entirely new development

To address some outstanding points: lupus is not necessarily progressive so there is no point talking about " being in the early stages". There is no way for telling for sure if the lupus will progress to more severe forms than at the point of diagnosis or into different forms. "The only sure thing about lupus is the uncertainty". Another pretty sure thing is that it is less likely to worsen or develop if it's treated in a timely and effective fashion depending on what the symptoms are at time of diagnosis.

One of the very useful side effects of Plaquenil is its slight blood thinning action. It is often used along with a low dose aspirin to help prevent a stroke or thrombosis in people who have antiphospholipid antibodies but haven't yet suffered a related incident. Its main use is the very important one of modifying the lupus by changing the chemical balance of the cells thereby reducing disease activity. Inflammation will naturally be lowered when disease activity is lessened and the Plaquenil has additional anti inflammatory properties on top of that, I think

Maybe the consultant had suspicions that lupus was a possibility when she prescribed the Plaquenil before and perhaps in this last lot of blood tests there were signs of it or maybe you reported additional symptoms.

It's a pity she didn't think to take a few minutes to explain things to you but I think we all think of questions after appointments when there's been anything new.
I don't know if you go to the St Thomas' Louise Coote Unit but each time I have been I have never felt hurried despite the obvious pressure they are under. If you aren't happy with this doctor maybe you would get on better with one of the others there.
I was reading about APS treatment the other day : one doctor commented that the risk of another stroke is much greater than the risk of side effects from the Warfarin ( especially bleeding ) so long as the INR is checked.

I hope you'll be feeling better soon and I hope the forum will be useful for information and support

All the best

Clare

 

[Marika]

How come Dr's take the liberty to say 'mild' Lupus......
I've never heard one say 'you are mildly pregnant' you've either got it or not.....no two patients are the same....there are lots of poor souls on this site much worse off than me....but on my bad days I wouldn't wish them on anyone.
So you ask away all the question you need to next visit, it's your body that's in pain not theres.
(Sorry of i sound agressive had a rotten day at school)

Marika

 

[marymackay]

Welcome Jen

Welcome to our site, Jen,
and there have been some great replies to your post.

Mild Lupus is certainlyan irritating d/x. Very like my first d/x in September last year- Lupus Like Symptoms., at least onto Plaquinel. Unfortunately I don't have a APS d/x yet.

I am sorry that you had a stroke even after your APS d/x. You must be pleased as you are picking up so well. I also have had 2 strokes etc over time, and did pick up to work again etc, but symptoms have caught up again, sending me on search like you for specialists who know APS/lupus. Not easy in north or even southern Australia, but I'm working on it.

Mild doesn't apply to me as I have so many organ /body :wink2:complications. I hope you have found a knowledgeable GP to help also, as afraid I haven't.

Good luck for your future ambitions to a happy life.

 

[jennylynne]

Thanks Lola,

My consultant is Beverly Hunt - at the same clinic as yours, I think. I did take a reasonably long list. But I really didn't expect her to say I had Lupus! I rang the access to med. records department at St Thomas' today and am going there to fill in the form to get a copy of my blood results next Tuesday. Hope that will shed light on why I've rather suddenly been given this diagnosis.

Thanks for you reply
Jenny