Change !!??

[larissa]

Whats the chances of mild Lupus changing into severe ( affecting main organs ) Lupus !!!???? I know drs can control it , but to what degree !!!!??? can they stop it becoming much more problematic !!!!!???

[larissa]

ok , i dont care , i,m just gonna ask what i am ultimately worried about, bottom line , whats the chances of this disease killing me !!!!??? sorry but this is in the back of my head and i have to let it out !

[Barnclown]

Hi there

I really feel for you

I don't have all the answers and am not an expert, but I just want to reply cause you've had nothing come in yet and I know how waiting feels

Also, i was kinda feeling the way you seem to be feeling when my diagnosis started to come through this time last year. It was all bewildering (especially cause I got the news I'd had SLE nice infancy, and had been managing secondary conditions all my life - am now 58). So at least I knew sle hadn't done me in, (but over the years I had had some big infection type flares eg stuff like tendons in my hand treated in hosp on IV for 3 days)

Anyway, have been asking myself same ?s As you are here now, and for what it's worth, have been looking into this for a full year now and pretty much get the impression it's yes scary but probably good to try not to feel too anxious about lupus going crazy on you...more is known about lupus now than ever before, support & treatment are here for us. yes do what your rheumy advices one step at a time and maybe join your local lupus uk support group as well as do what you're doing: come here to learn stuff on forum. My support group, the lupus uk book shop and this forum have gradually helped me get my head around thesevquestions & answers

Just a few suggestions, hope you don't mind cause your probably doing this already:: if you can get on an anti inflammation diet do it (lifestyle management has always helped me a lot, and now i've learned it really is important: experts tell me it may to some degree helped my organs a bit). the latest lupus uk magazine has good articles about fatigue, meditation & stress, also nutrition.

Well, take care

Am sure you'll get some good replies soon!

[larissa]

thanks for reply and good advice , but dont understand " impression its yes scary " or impression its yes " eg its scary or yes it will kill !!!???? sorry , read it two different ways ! x

[Barnclown in reply to larissa]

sorry; am not great at clarity sometimes (sorta emailitis) i meant trying to understand lupus can be scary (and has been scary for me) cause yes this is a complicated and significant condition. but my impression is there are lots of us living long lives with relatively mild versions of lupus and little organ involvement. so, i figure anything we can do to help our health generally (eg the lifestyle management stuff in the latest lupus uk mag) is the way to go

you've got some great answers here now: hope you're feeling you're getting to grips with this stuff. good to have you here. take care

[Hidden]

hi larissa

i was diagnosed 1 month ago and felt exactly the same as you i asked my doc outright will it kill me or at least shorten my life im 42yr and he said that lupus can stay mild (which mine is at the moment) for the rest of my life and never effect the organs or get worse. i have to hope that this is true and trust the docs are looking after us.

the way i have read and reserched lupus is that drugs are there to control it but not cure and regular check ups keep a close eye on it and if the disease show any signs of getting worse the drugs get stronger,it is very scary but i believe in one day at a time and try not to let lupus control my life.

there is no doubt that lupus can get very serious which is a constant worry to us all ,but worrying all the time means lupus is in control of you not you in control of it.

if you have any questions you should call lupus uk they are very helpful,

take care

debbiexx

[larissa]

Debbie,

Thankyou so much for your reply , your right i know , just every now and then this question pops into my head ! I am 40 yrs and was only told about a week ago that my rhuemy thinks this is also what i have ( aswell as fibromyalgia ) . You are newly diagnosed so i imagine its very new to you too , thanks again ,

Lara xxx

[Hidden in reply to larissa]

hi larissa

sometimes i wonder if we will ever come to terms with this scary disease im seeing a counselor at the moment to help me come to terms with lupus,as its caused me to change so much in my life i had to give up work, slow right down,change holiday destinations and the worst of all is having to rely on others as ive always been independant.

my family have been great but its been hard on us all,so i chat to my counselor who said im greiving for the life i have lost, and in time will come to terms with it.(i hope shes right)

i know someone with fibro and she really struggles with everyday life so for you to have both must be tough.

you take care and remember theres always someone here for a chat.

debbie xxxxx

[janiceray]

No one can say you will die of a Lupus related problem,We just hope things will not develop that way,I have had Lupus for 22 yrs and I am 66yrs old.and you can never quite fully get your head around Lupus and the struggle that it brings but you do learn to cope.

But you have to live and learn to control Lupus not let Lupus control you as best you can.

So don.t fret what might be!! and live your luppie life.

Love & Sunshine

Jan x

[LoopyLu]

I have just been diagnosed as well....I love life and lived to the full. I cannot come to terms with this condition, I find it so hard. My husband is so good and so supportive. We have just started lambing, the thought of leaving all the work to my husband is so hard. We had a difficult time yesterday with a ewe and now I am back to square one today, every joint aching and finding it hard to get around. I just feel like crying, I havent got any books from the Lupus shop but I think I might get some and instead of ignoring this get on top of it. How about you Larrissa

loopylu

x

[larissa]

Thankyou everyone , just given the support and advice i needed. I am going to learn as much as i can, look after myself and try and stay positive xxxx

[Barnclown]

Go girl go!

xo

[larissa]

chuckle !