[Surferboy]

OK. I hope I don't sound to out of order in this post - I really am not trying to be. Also, apologies in advance for the generalness of the question.... But I just want to get a few things straight in my ever so confused head

To all those people who were initially diagnosed with "Mild SLE", since your diagnosis have things got worse (with or without medication)? Or have they stayed the same (blood test & urine results, aches & pains, rashes etc)?

 

[greenhaggis]

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

 

[cath]

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

 

[Clare.T]

I initially had 'only' skin lupus which got worse and worse. I was told that my aches and pains and fatigue had nothing to do with the skin lupus. In fact they did and it took me 26 years to get the right medicines and degree of concern and expertise to get the help I needed.
I have even known cases of kidney failure and transplant whose lives have turned round
Most of the long diagnosed people here have not responded well to medications and some have severe lupus but you will read how wonderfully those people cope. People are doing well don't usually post on forumsThe chances are excellent that with good care and a bit of luck, all will turn out much better than you fear.

Getting onto a support forum has made the world of difference to so many people so you already have your presence here going for you ! Have faith !

Clare

 

[LoopyLoo]

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

 

[Salopsally]

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

 

[Surferboy]

Thanks for the replies

I guess this lupie thing is a weird thing.

Only last Thursday - before I knew I had Lupus - I played football and scored the goal of the game. Now, a week later and I'm thinking how on earth did I manage to run round that pitch for 90 minutes, let alone score that goal!!! Yesterday I could hardly move, swallow, had a high temperature etc

Oh so baffling.

 

[Salopsally]

Hi Surferboy,
Im being cheeky now. lol Perhaps the sore throat and high temperature is 'Man Flu'. :wink2: Im just kidding you but when you get a Lupus diagnosis you tend to put everything you get down to it. Sometimes its hard to know when you just get a normal virus or infection.
Hope you continue to feel a bit better.
Sal x

 

[Lis]

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

 

[Surferboy]

LOL @ Salopsally :rotfl: Even funnier is the fact that my wife said EXACTLY the same thing :lol: And to the both of you

But I do think that it was a flare as my knees were, and still are killing me. Especially when I sit for a while and then get up. First a severe clicking sound followed by grinding, crunching pain Also got pain in wrist and shoulders.

Lis, are your raynauds and sjogrens linked to the SLE? Sorry, I'm not too clued up about these.

And I know the feeling about feeling totally smashed (and not in a drunk way!) on a Friday night. But why is it always that I feel like this on a Friday? I put it down to the fact that my mind is telling me "right, no work tomorrow so body switch off". But I hate this as the weekends are a time to do REAL stuff!

And did you say you are on holiday till 26th of August? You lucky thing Anywhere nice you'll be going?

 

[Salopsally]

Ha Ha Surferboy,
:blush: I apologise profusely. We have no sympathy us women do we lol.
No.. does sound like you are in a flare though. What a pain it is. Im lucky coz Im getting a bit old anyway and the thought of surfing and the like fills me with dread anyway but for you it must be devastating. But im sure you will still be able to do lots of those things once you get sorted out. Its early days yet. You may need medication but hopefully things will get better.
Take care and hello to your wife.
Sal x

 

[Lis]

Hi surferboy
Yes the raynauds and sjogrens is connected to the lupus. With sjogrens it is sometimes difficult to tell whether it is that or the lupus flaring they are very similar in symptoms except I have dreadful problems with dry eyes to the extent I have prescribed hourly drops to keep them moist.

Holidays - yes I'm off to Mauritius followed by Dubai from 4th August. It's technically their winter so won't be too hot, though the sun could be a problem. I'm taking a good book and intend getting lots of rest in the shade - away from emails and my mobile phone!

Lis

 

[Surferboy]

Well, I done some research and the symptoms of Raynauds seem all too familiar to me. Blue finger nails in the cold. Cold feet and hands. But will chat to my consultant when I finally get to see a proper consultant!

Lis, you lucky lucky thing. I've been to Dubai and know you'll love it Mauritius was planned as part 2 of our honeymoon... until we got the prices in We instead opted for the Maldives (which wasn't my cuppa tea at all!)

Take care of yourself, but more importantly chill and have loadsa fun

 

[lin]

Hi surferboy,
yes i was told mild sle for say about 3 yrs, then i kept getting pleurisy Raynauds ,then it started to attack my brain, having now seizures,
from just taking plaq,.... to now taking loads of meds twice a day. and now cant work. so i think your question was a good one


all the best Lin xxxxxxxxxxxxxxxxxxx

 

[AmandaB]

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

 

[Surferboy]

Lin, how long ago was it since you were diagnosed with "mild SLE"? Was it the Plaq that caused the attack to the brain?

I can't believe Dr's just state someone as having "mild SLE" when they should know it's a lot more than that. Or is it just that the mild SLE gets more severe over time?

 

[cath]

Hi,

SLE doesn't always stay the same. Someone can start of with mild or few symptoms and develop organ involvement later, and the doctor's can't predict this.

On the other hand some doctors do seem to have extreme difficulty in admitting that there is anything wrong. I don't know if it is fear of scaring the patient or creating anxiety, or just not wanting to have to do any more work

X C X

 

[lin]

Lin, how long ago was it since you were diagnosed with "mild SLE"? Was it the Plaq that caused the attack to the brain?

I can't believe Dr's just state someone as having "mild SLE" when they should know it's a lot more than that. Or is it just that the mild SLE gets more severe over time?

I was Dx with mild sle in 2000. then it was in 03 things started taking off, but NO it wasnt the plaquenil that was to help me, it was the lupus

but as others says, i think they say mild when no ogan involvment,
fingers crossed for you

hugs Lin xxxx

 

[ALWIN]

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.

 

[lullrich76]

Hi Surferboy,

I was diagnosed with UCTD in 2005, but I had symptoms that began in 2002. It started with a painful and swollen foot for 8 months that the docs couldn't figure out and then it just disappeared. I get it back periodically, but never as worse as it was then.

My rheumy has me on plaquenil and is just watching me. Since being on plaquenil, my skin irritation from the sun has improved a little and my skin ulcers are less frequent. I have dry eyes, mouth, joint pain, and fatigue that I don't really notice a difference with. My ANA is always high and my C4 is always low. I have had pleurisy and costochondritis, as well as shingles multiple times. I always have something that is out of range on blood work and urinalysis.

There are times when I don't even feel like moving, but I usually do anyways.

Like others have said, everyone is different with this disease. It is so unpredictable.

Take care,
Lisa