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Old 10-09-2009, 06:33 PM   #1
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velvet rose HB User
Is lupus the end of the world

Do people with lupus ever start to feel better and normal again? Do the flares eventually stop coming? Does medication help people to feel the way they were before they had lupus?

 
Old 10-10-2009, 01:54 PM   #2
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Re: Is lupus the end of the world

From reading and researching Lupus there is only one type that has a high probability of cure and that is Drug Induced Lupus. With that type if you stop taking the offending drug, Lupus will go away in most cases.

Regarding SLE the type my sister and I have and the most common type of Lupus, I can only speak for myself and people I personally know. I hate to put such a negative spin on it, but in a word..No. You may get lucky and find a medication combo that works for you. Then you may be able to function in an almost nornal capacity. However, more often than not this is not the case. It really depends on your disease. Lupus is different for everyone. Some cases are more severe than others and some are not as severe but are just very painful. Very often lupus accompanies Fibromyalgia and that comes with its own daily pain. There are cases that have just skin manifestations such as Discoid Lupus. In those, you might get lucky and find medication that will get it under control and have only occasions where you are sick of flair. Not to say it would not be just as painful, just that you would have a better chance of having times where the disease is in remission and not have the organ problems with progressive worsening of your condition.

Regardless of what type of lupus you have or the degree of severity, life is most definately forever altered. You will need to make sure you take your medication each and every day. You will need to limit your sun exposure and be very careful about being exposed to colds, flu, and virus's circulating since your immune system is basicly a mess. You will need to make sure you get the proper rest so you don't get runned down and you will need to find ways to deal with stress since it is also a trigger for a flair.

Hopefully, your disease will take a milder course and you will have days that are as normal as possible.

Sincerely,

Last edited by ErinS64; 10-10-2009 at 01:54 PM.

 
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Old 10-11-2009, 01:53 AM   #3
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Re: Is lupus the end of the world

Quote:
Originally Posted by velvet rose View Post
Do people with lupus ever start to feel better and normal again? Do the flares eventually stop coming? Does medication help people to feel the way they were before they had lupus?
some days, in some ways and then sometimes not!
sounds cryptic - sorry! (sly is the wolf that we live with) .............. but yes and no and at different times.


personally, i've had normal, i've had sick but i've not had life threatning! so i am blessed and my world has not ended yet!

but i seen mentioned ......... you should pretty much know what you are in for regarding organ involvement within 5 years of being dx'ed

for instance lupus nephritis = kidneys, CNS = brain etc, some are potentially life threatning,
but i personally think if you look after your organs you give yourself the best chance!

doctors are there to help us and keep us safe best they can! but they are human as well.

sorry the next part may seem stupid but if it bothers anyone i can edit it .........

when you buy a house you go look around, there is a lot to consider (schools, public transport, motorway access etc etc) so when you go to a doctor so there is much that is to be considered, sometimes the first one we see is not the perfect doc, if our issues change and the need for a different specialist arises, the team will change and the Rx and all we must do is KEEP BREATHING!

Last edited by Angel MJ; 10-11-2009 at 09:27 AM.

 
Old 10-11-2009, 04:51 PM   #4
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Re: Is lupus the end of the world

With all that is wrong with me--some days, mostly around noon, I feel something that nudges my brain and says..."remember this"? It is always such a high! Those moments are golden and I treasure them but the one thing that moves me to almost believe I am well is when I visit my grandgirls (3 &5). Sleeping with them I look at their little faces right after they drop off to sleepy town and just smile!! How wonderful...
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Old 10-11-2009, 05:09 PM   #5
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Re: Is lupus the end of the world

The definition of "normal" changes. I'll never feel 21 again and I'll never feel pre-lupus. I actually think I live a pretty normal life and do much of what I want to within the lupus limits....stay out of the sun in peek hours, rest when necessary, go to medical appointments. I worked until recently, have 7 grandkids that I thoroughly enjoy, interact with my community and generally enjoy life. Am I going to die from lupus? Probably not. In the meantime I'll continue to enjoy life with all its "normal" ups and downs.

 
Old 10-18-2009, 06:34 PM   #6
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Re: Is lupus the end of the world

I was diagnosed with SLE in 1995. I had unexplained fatigue and low blood platelets. after all was said and done my bood work pegged me for the Lupus dx. i have a wonderful Rheum. I wasn't encouraged to have children. 3 kids later, I enrolled in nursing school obtained my RN and had my spleen removed. I have flare ups now and again. Mostly pain in my joints. I am in a flair now, and it looks like I am presenting with raynauds too. Just another bump in the road. I have not had a flair in 3 years, so thats not so bad. I am 40 yrs old now and I know I have to keep pressing on. I will take my meds, rest when I can (LOL) and keep Dr appt's. Yes you can live a good, productive, happy life with Lupus. It doesn't have to define who you are. Think of it as just a small part of who you are like your blood type. Don't get me wrong, in the begining I mourned for who I used to be. It took some time to accept the new me. Husband has been with me through it all, so it is managable. Take it all day by day and focus on the good stuff. There is still alot of good stuff!!!! Hugs!!!

 
Old 10-22-2009, 03:06 PM   #7
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Re: Is lupus the end of the world

Interesting questions.

I have learned over the years that life as I knew it when I was "pre-lupus" is over. I actually took some time to grieve the loss of that life. It helped me to not dwell on the negative and to help me reinvent MY kind of "normal".

I have been on quite the rollar coaster ride health wise, with LUPUS and then going through two brain aneurysms, and now learning that I also have MS.

I am currently experiencing what I used to call "Lupie fog" but have since learned that both lupus and MS can cause that brain fog feeling so my thoughts are a bit jumbled. Due to this I will come back later and post more when my words are not failing mebut....

To make a LONG story SHORT....

ABSOLUTELY NOT.....Lupus is NOT the end of the world. Not even close. For ME (and I can only talk for myself) LUPUS and MS does not mean the END of the world but it DOES mean the start of my NEW world.

Wishing you peace and health,

SW
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