die from lupus

I'm New with this.But 5 month's ago I was told that I have sle lupus.I was wondering since I can't afford all the doctor's and med's,that I would just live with the lupus and deal with the problems that come up,and not see the doctor's or take the med's.What I wanted to know was could I die from the lupus.I have had one doctor tell me I would if I didn't see my doctor's and take my med's and a another doctor told me that lupus wasn't as bad as people thinks and people don't die cause of lupus any more.

Hi Razor, welcome to the group. I am sure you will like it here, there are wonderful, supportive people here that truly care about one another. I am sorry to hear you have been diagnosed with Lupus.

I don't really think this is a question that any of us here can really answer. I know there are a lot of treatment options for lupus, more than there was 50 years ago but going at it without meds I really don't know. I guess it depends how on Lupus affects you, there are mild and severe cases of lupus and it can be a manageable disease (in most cases) with the right meds. Unfortunately there is not one med out there to treat it, the meds available to us treat the symptoms of lupus therefore a lot of us have to take more than one. I guess my number one question to you is how does lupus affect you (joints, kidneys, heart, lungs, etc)? How were you dx?

Fatality from lupus has decreased over the years. This is due to early detection, more advanced diagnositc testing for lupus related effects and more options in treatment. If not treated any illness can be fatal.

Many good links have been posted to help you find assistance with medication and healthcare. I recently read that the generic form of Plaquenil (usually the first defense in treating lupus) runs about 600.00 per year out of pocket if one doesnt carry insurance. That breaks down to 50.00 per month which is manageable IMO seeing what the cost of prescription drugs are today. Walmart usually has rx's much cheaper than other pharmacies if you dont carry any type of coverage. Many times dr's and clinics offer samples for patients that cannot afford medication. My primary dr. has an entire back wall of his practice loaded with samples. I dont think I have ever been in the office and not seen at least two drug reps there. You can also call the drug companies directly and ask for samples and if they offer any assistance programs. Being ill is certainly more challenging without insurance coverage but there are many programs out there. Sometimes it requires digging to find them but you do have options. Your only non option is not getting care!

Obviously it is best to catch lupus sonner than later. If caught early there is less chance of organ involvement. Being proactive really is the key to this disease I think.

Hi Razor:

Several of the members have given lots of wonderful suggestions. Lupus can be mild to severe and it depends on each person. The result of death from lupus is much less than it was 30 yrs ago. Can it happen, yes it can. Do people manage w/o meds, yes some do. I hope that you get the support you need and stay strong don't give up.

Best Wishes,
Barbara

Hi everyone,

My name is bea I have been diagnosed withe sle lupus.  I have been off work for 3 days stiffness and pain and fatigue kept me in bed for 2 of those days.  My problem is I really do not want to believe that I have an illness because it is not something that is constant.  I have had my thymus gland removed.  The docs thought I have another disease called Myasthenia Gravis but I have none of the other sympts. Have you guys been able to hold gainful employment? That scares me to know there is something going on in my body that can totally zap me out and the next couple of days I am fine.  Is this a disease that causes one to be labeled disable?  Please respond for this is my first time on line looking for answers. My arms and legs hurt all the time with a headache. This sucks

Hi razor and willieb--
I have a lupus like problem caused by past hepc infection/tx and they are pretty positive I have sjogrens syndrome, which can be like lupus when it is really bad, but usually not near as bad as lupus can be. I take the same meds and the thing about not taking the meds or going to the doctor is that you are going to suffer more and you are more likely to get sicker than you would on regular medicine and so you would end up needed more medical care and medicine and treatment that if you took preventative/management meds like most of us do. Many of us were driven to taking this stuff because we felt so bad, after all, that's how we usually get diagnosed, we dont go to the doc usually if we are doing great. There are some good meds out there that don't have horrible side effects that can keep you from getting sick or sicker and they aren't horribly expensive and there are prescription assistance programs that can help you. I don't see a doc all the time, I can go just 4 times a year if I am doing good and call in for refills, that's if I'm doing good. Don't be afraid. What you don't want to do is ignore the illness and let it unnecessarily progress until you can't take care of yourself and you end up in a horrible state run nursing home or something awful like that, with no freedom and suffering horribly. I have diabetes and take medicine for that and I consider my sjogrens/lupus meds to be the same type of thing, just another pill I need to take to keep me feeling tip-top. I feel much better on the meds, less depressed and have much more energy and overall healthier with less anxiety. I hope you can get in to see someone. Filing for social security or ssi or medicaid if you are in the us is something you may want to consider. It can take up to three years to get social security or ssi, but sometimes its faster. Anyway, I started when I was not so bad and got really bad and was so glad that I filed earlier because I couldn't have handled doing it later. Anyway, once I got social security I was able to get my treatmeant and am doing good. I hope this helps. I'm bound and determined not to make it a big deal until it is, until then, I'm going to take any med I need to to feel normal again and prevent my body from getting destroyed by the disease. Well take care and know my good wishes and prayers are with you both and if you have any questions about how to find resources and stuff please ask, someone here always knows how to get you what you need so you don't have to go without. There are so many good people here and between everyone we know a lot of places, websites and resources to get care. Well, I hiope you are doing good and can get what you need to preserve your health.

Razor,
I was diagnosed with discoid lupus in 2010, at first I faithfully took the medicine see my doctor, however the spot on my face only got a little better.. Last year worried about being a steroids for so long I weaned myself off and haven't seen my doctor in a while.. On March 18 2014 I became very sick to the point of three days down in bed. It passed but the pain in my stomach never completely went away.. Then on April 19 I got real sick again.. On the 21 I finally went to the er. Now I am waiting for more tests because my lupus may of progressed into the SLE type and possibly developed Crohns to go with all the joys of the illness.. Being stubborn cost me a lot this time.. I am sicker now than I ever was and for once I am actually scared... Please if I could tell you one thing from experience See your Doctor take you meds or you could cause serious problems. If my boyfriend would not have really got on my butt I would still be laying in bed today, because I thought it was just a belly ache which is normal for me but not to the degree.. I am glad I went to the hospital, I am not going to happy about seeing the GI being he does the colonoscopy but if it will make me better and I can live long enough to watch my grandbaby grow up it is worth all the pain and treatment.. I know I got so sick because I thought I was okay and didn't need meds.. I did not take lupus very serious because everyone around me acted like oh its just lupus.. But lupus kills and it is serious don't ever let anyone convince you different... Good luck I will pray for you that God will help make the right decisions for you treatment and care..

Locking this thread as it's from 2007. Hippimom has not been on.