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Hi, have just joined this site, although have logged on to this website many times before.
Have been suffering with SLE for 9 years since the birth of my daughter. I am 26 and having lupus has robbed me (and my daughter) of having a normal life. I have tried every single treatment..........from plaquenil to cytoxics .........the whole lot. I am now awaiting the new treatment due in the autumn. In the meantime I am admitted to hospital frequently with infections such as pneumonia etc and am completely disabled. Some days I do manage to get out of bed but have to pay for it with my joints seizing up and not been able to move. As well as the joints being affected so are my muscles, hair (I have lost most my hair), skin, lungs (pleurisy and pneumonia 4 times in past 2 yrs), heart (I suffer from pericarditis). I have also been diagonised with proctitis, fybermyalgia, cholecystitis, rheumotoid athritis, etc etc...all a consequence of having SLE. Has anyone else had lupus as severe and got better??
 

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Hiya, just wanted to welcome you; what a dreadful time you have had, I am sure there will be people here that will follow me with more insight into the disease than I have. Just wanted to say I am glad you have joined the forum its a great place for good advice, friendly informative people with a sense of humour... which you probably know already if you have been lurking for a while!:) I wish you all the best,
Claire X
 

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Hello and :welcome: to the site,

I am so sorry to hear what brings you here and to hear that lupus has affected you so severely.

I'm afraid I don't feel qualified to answer your last question as I am not that severely affected myself. I do know that we have some people here that are pretty severely affected and who have, over the years, seen great improvements in their treatment and also in how they cope with and manage their disease. I hope that they will be along soon to tell you a little about their experience.

Others may be less lucky but hopefully being able to share things here and talking to people who understand what it is like to live with this disease everyday can help.

In the meantime I hope you will enjoy being here.

hugs :hug:

Katharine
 

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Hi Kid

I'm so sorry that you've had such a difficult time finding a suitable treatment. I hope that you will find relief with the new treatment to which you refer. What is this?

Merle
 

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Discussion Starter #5
Hi,
thanks for your reply. Im not sure what the name of treatment is, all I know is it is not in the UK yet but when it arrives my consultant is going to apply for funding. In the meantime there is talk of having an antibody transfusion?? ( I think this is just as my antibodys are low) and immunoglobin therapy to try keep things as stable as poss.
Katie x
 

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Hi Kid

Ive had chronic lupus,:eek::eek::eek: different to u but my heart, lungs, gut, skin, muscles and bones all attacked.
The last 3 years have been an experience tried every drug nothing was working till last resort meds Campath. By this time I could hardly move looked like a frail old lady. Now the meds they tried b4 r working for me.
I have retoximab IV every 6 months this helped with the cocktail of drugs I take. I take over 30 pills a day Im so much better now. When I was bad I thought this is how my life is now. How wrong could I be. Yes you can recover from this,:) I will always have it but it can become managable;)

tc hope you get sorted soon

Dixy
 

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Hi and welcome to the site. I am glad the you finally jointed us. It does sound as if you have been having a hard time. It is not fair that lupus comes in uninvited and takes some of our most joyous things away. I am not sure if I can answer your question as I have sle, ra, sleep apnea, bone spurs, tennis elbow, migraines, and oh yeah a curviture of the spine. So I am not as bad as you.

I know that we all have days that we can do some stuff we use to but come later that day or the next we are sorry for having that one day. I know that anything is possible so don't give up hope of feeling at least a little better some day (I hope soon). I hope that you are feeling as well as you can, and start to do some improvement real soon.
 
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