Mild SLE

Hi there,

Im my instance since starting medications my symptoms have got worse although still no major organ involvement etc.. Wrist knee stiffness, headaches, rashes/redness and temperatures etc are all worse.

My bloods however, dont always show that I'm suffering!

I find it all a puzzle, my Immunologist finds it all very interesting, but he does manage to see me when I at my worst - always agrees that I am flaring more than usual!

The other times my bloods have indicated inflammation and I've generally felt much better!

Sorry I cant give you a text book answer - my bloods are never text book if looked at alongside symptoms.

At least I know that there are extra meds to add to the cocktail or even completely news ones. I'm sure in my case I will get everything sorted in the end and live a more normal energised life once more.

Lesley

Hi Surferboy,

Welcome to the forum.

Don't worry about your question - it is fine. However giving a straight answer isn't possible. Lupus is very different for everyone, and whilst one person will have a very stable and mild disease course, anothr will progress rapidly to more serious complicaions, and yet another may start out with something acute and later have complete remission.

What doctors do say is that the first 5 years after diagnosis are often typical for that person. So, if you start out without organ involvemnt and after 5 years still have not had any, there is a better chance that it won't happen in the time thereafter.

The term mild lupus is a bit of a red rag to a bull for many lupies. What the doctors mean by it is usually no organ threatening disease, 'just' skin and joint problems. But this is in no way a walk in the park. Mild lupus is still hard to live with and sometimes severely disabling.

Hope this helps answer your question?

X C X

Hi Surferboy,

I had this conversation with my rheumy last week. I have 'mild lupus' and I told him that many lupies get upset at this term.

He completely understood and this is his explanation of the differences he sees:

Mild lupus - with no organ involvement however the person may have to live with chronic and debilitating symptoms often leaving them with a restricted quality of life.

Lupus with organ involvement - especially the kidneys, the patient may have little or no symptoms but has to live with the possibility of the nephritis progressing which could lead to impaired kidney function, dialysis etc.

Please note that I am not trying to scare anyone, this is only my rheumys take on how he has seen how lupus can affect patients and how you can't say that any one is a lesser of the two.

I am also in agreement with Greenhaggis in that my bloods never show how I'm feeling. Thankfully my doctors treat me on the symptoms I'm having.

Hope that helps a little,

Pam xxx

Hi Surferboy,
Ive never been told my SLE is mild but I dont have any organ involvement and I dont really have too many skin problems except for occasional hives which go as quick as they come with no evidence of them ever being there.
I dont seem to be sun sensitive either.
Ive had 7 years remission when I didnt take any medication then a 2 year flare and now in remission again with no medication so like they say it does present itself differently for everyone.
I see your very recently diagnosed and I know how you feel. The dread of what might be to come is very frightening. I think its probably best to take it a day at a time and cope with what ever is troubling you on that day because things seem to change so fast. Sometimes for the better and sometimes for the worse. Mine has been mainly joint problems and chronic fatigue. Another good thing is when your joints feel better they usually are and it doesnt leave too much lasting damage like it would with Rhuematoid Arthritis so there are some up sides.
Glad you are getting all your questions out on here. Its a frightening time when you are just diagnosed and the more you know the easier it is to come to terms with it and cope. It has helped me no end.
Wishing you all the best,
Sal x

Hi Surferboy
I was diagnosed 5 years ago, initially with raynauds and sjogrens. SLE was added and then 2 years ago scleroderma. Can't say my symptoms have got any worse particularly though symptoms between sjogrens, SLE and scleroderma seem to take it turns in being 'bad'. At the moment it's my stomach which is suffering - a sign of the scleroderma which affects my digestive system the worst. I've been very lucky as despite sometimes agonising pain I've managed to keep working full time with hardly any time off. Though I do tend to crash at weekends and rarely have any energy to do anything other than work.
Hope you are feeling better from your sore throat - lupus does tend to throw up the unexpected at the most awkward of times. Somewhere on the internet there is a story posted about 'spoon's which I read shortly after being diagnosed - it talks about having so many 'spoons' which are energy - you have to save your spoons and use them wisely - or suffer! I tend to think of my week as using all my spoons, saving them up at the weekends to survive the following week. I'm on holiday at the moment until the 26th August so plenty of time to save lots of spoons ready for September.

Take care
Lis

Hi Surferboy,

I always referred to my Lupus as mild but have recently had a ticking off by my Rheumy. Over the last 2 1/2 years I've been having a bit of an ongoing flare which started with a breathing issue and then resulted in disclocation of both knees, tearing of both patella tendons and my tendon in my right index finger rupturing. Now I know this sounds a bit scary but to be honest, I just sort of took it in my stride, after all, the Dr's know what they're doing and there are people worse off than me.

So anyway, my knees are now ok (to a degree) but the breathing thing has got worse & I had a blood clot on my lung before xmas and have recently been told I have a problem with my mitral valve in my heart. Again, I know it sounds scary but I just plod along regardless.

I got into trouble because I was pushing for advise about what more I can be doing to help myself and was told rather shortly that the fact that I still work full time & go to evening classes really is pushing things as it is and I need to accept that I can't do certain things anymore - yeah right!

My organ involvement has got worse but through sheer ****** mindedness I will not let it beat me down - I will win because that's what I believe in my own mind. If I can remain mentally strong I will overcome this temporary bad phase as I like to think of it!

Sorry if it sounds like a rant but I will not let this beat me down, no matter how 'severe' it is!

AmandaB

Hiya

I have 'mild' SLE, Hughes ans Sjogren's.

I was diagnosed over a year ago (memory useless). Started to be in less pain and regain a bit of stamina about 10 months after starting 400 mg plaquenil and other meds.

I now feel as i did about 5 years ago, which is generally well, but start to get tired and achy if i over do it. Itch a lot too - particularly arms. I feel I have come a long way and only experienced improvement once the side-effects of the meds subsided.

The most important thing in helping me to keep symptoms at bay seems to be taking the tablets and pacing myself.

My eye problems turned out to be ordinary eye problems, rather than side effects - I simply needed spectacles.

My headaches that must have been a stroke coming on turned out to be migraines - i got some tablets that work.

It is easy to think everything is lupus related and forget you can get ordinary bugs and decrepitude too!

When ever i decided there might have been a mistake, that i didn't really have these autoimmune conditions, and over did it - i got/get a fim slap across the chops from my body.

I don't ask myself if i am going to get worse or better now, but i did.
I treat my 'illness' more like a condition like permanent pregnancy. What i mean is, unless i do deteriorate, I am what i am and take each day as i need to. I just have to deal with an altered way of being.

When i want better health, I focus on the fact that i feel a lot better than i did and i try to remind myself how i felt before the meds.

Here's to no organ involvement ... and long may it last!

Take care.