die from lupus

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New Member

Date Joined Apr 2007
Total Posts : 16
   Posted 4/21/2007 12:17 PM (GMT -6)   
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.

Veteran Member

Date Joined Jan 2007
Total Posts : 610
   Posted 4/21/2007 12:33 PM (GMT -6)   
If a lupus person does not take care him/herself and does not take medication, there is a possibility to die, because lack of medical care. It really depends on how bad the lupus is on a person and depends on which part of the body lupus attacked the person. I had known two persons who died of lupus. But don't be scared. I had lupus for 17 years and still "healthy." There is one who just joins the forum and said have lupus for 30 years already. A lot of people in this forum also living with lupus for quite a while. As long as you have medication and take care of yourself, lupus should be able to under control.
Regarding to your last post on medical assistance, I replied already. Please see the post. As long as you can get a doc to sign a prescription for you, you can apply for patient assistance program and go get prednisole from Walmart.
Do not worry! Things will work out.

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 4/21/2007 2:05 PM (GMT -6)   
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?

I am sure there are programs out there where you can get some assistance with your meds. Here are some links I found:




Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (gluten sensitivity)2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
Meds:Imuran, Plaquenil, Flexeril, Sulindac, Levoxyl, Folic Acid and magic mouthwash (as needed)

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 4/21/2007 3:51 PM (GMT -6)   
Hi Razor,
   Welcome to the forum. I have had lupus for 30 years now. I was not dx'd for the first 13 years and wasn't treated. Like the omega and stacie said, lupus can be mild in some to organ involvement in others. Stacie gave you some good links for assistance.
   Please read and research all you can about lupus. We are all effected differently with this disease. I hope you will be able to get some assistance and maybe find a doctor that will see you at a low or no cost.
   Please keep us updated and take care. You will be in my thoughts and prayers.
 Co-Mod: Lupus Forum
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
mirapex,advair,foxamax,donnatal,folic acid.
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Regular Member

Date Joined Dec 2006
Total Posts : 239
   Posted 4/21/2007 5:27 PM (GMT -6)   
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.

Regular Member

Date Joined Jan 2007
Total Posts : 279
   Posted 4/21/2007 6:11 PM (GMT -6)   
Hi Razor,

Hope you can find some comfort and strength here with folks who are going through this. You can deal with it! Really, you can. Folks have had some good suggestions. Please, please, think about what is going on and how you can help to save yourself. We are here to help you out.

Stay Strong,
Diagnosis: Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena (both diagnosed in 2006)

Meds: prednisone (5.0 mg wish I could taper), Imuran (2X50mg), Prilosec (20mg), Prozac (off now)

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 4/21/2007 6:39 PM (GMT -6)   
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,
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, MDS (Blood Cancer). Mediport and tons of meds.

Regular Member

Date Joined Apr 2007
Total Posts : 81
   Posted 4/21/2007 6:50 PM (GMT -6)   

Hello razor,

You have been given some really good advice here. I would like to add just a little bit more if I may.

Thje most "common" causes of death in lupus have been given as "overwhelming infection" and "kidney failure".  KF is normally associated with SLE but not all SLE patients will have it of course.  There should be no need for this to happen as patients who regularly see their rheumy can report any signs of a flare or being unwell immediately and treatments can be given.  I feel it is imperative that you take your medications and if you cannot afford them, them take the course of action offered by the other members in regarrd to getting assitance ith the cost.

Another thing that I would like to mention is that symptoms vary from patient to patient. They even vary within one patient from time to time. Lupus is an illness - sorry I have never liked the word disease personally -  that can attack different organ systems of the body, and it therefore affects everyone differently.  When we say organs, it doesn't always mean our internal organs of course.  Your skin is an organ as you know, and some people have problems with discoid lupus and its subsets. 

Of course it isn't only medications that play a role in our health when we have lupus.  Diet - nothing special, just a well balanced nutritious one - exercise - when we can manage a little - lving as healthily as we can and more importantly keeping out of the sun, are just some of the other things that are good for us lupies.

I would seriously consider looking into getting assistance to help you get your medications as I said previously.  Also I think that the doctors you spoke of need educating more on lupus and its implications. No patient wants to have sush harsh thing said to them, and need care and attention and of course undersanding of their situation.

Take care


Post Edited (goldenwings) : 4/21/2007 5:54:39 PM (GMT-6)

New Member

Date Joined Apr 2007
Total Posts : 1
   Posted 4/21/2007 10:02 PM (GMT -6)   
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

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 4/21/2007 10:14 PM (GMT -6)   
Hi Willieb:

Welcome to our forum, I'm sry to hear that you've got lupus. I've had lupus for 18 years now. In the beginning my symptoms were very mild and I was able to work, go to college full time and take care of a baby. I worked from the time I was 16 until I was 36.

I'm now totally unable to work and am in the process of attempting to get disability. There are several members here who are now on disability, and some who are trying to get disability. Lupus is the illness of 1,000 faces, and it effects us each differently. It can be mild where no medications are needed, to being very serious, where the patient may need dialysis. I've got several organs involved with my lupus, I require IV hydration at home, and I'm very sick. I also have blood cancer so it really complicates things for me. It all will be depend how much involvement you have, and what medications your doctors put you on. Some of our members here work full time and part time jobs.

Looking forward to getting to know you better, and please feel free to ask any question. Their will be someone who can answer it or tell you where to find the answer. Hope this helps.

dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, MDS (Blood Cancer). Mediport and tons of meds.

Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 4/21/2007 10:43 PM (GMT -6)   
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.

"...brain, what is brain?"
--Kara, one of the "givers of pain and delight", aka woman of Sigma Draconis VI, "Spock's Brain" episode 56 season 3 of Star Trek--I'm not a trekkie but this one was funny!

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 4/22/2007 8:51 AM (GMT -6)   
Hi and welcome to both razor and willieb.

razor, I don't have a lot to add to the great advice you were already given. Please make sure you are well educated about lupus and how serious it can become if it is not controlled, before you make any decisions regarding not treating it. All I can tell you is that if I did not take medications, mine most likely would have progressed into kidney damage and even if I wasn't dead, I probably would wish I was dead from the amount of pain I have if I'm not treated.

willieb, I'm sorry to hear about your diagnosis - it can be a lot to deal with and take in. I remember being very scared and overwhelmed at first. I think that denial is a pretty normal thing - there are still days that I think maybe the docs made a mistake and maybe I'm not really all that sick, but then my body firmly reminds me that there is definitely something wrong. As far as work goes, I worked for a while but then got to the point where it just got too hard and my health was getting worse, so I quit working. There are people here who have been able to continue to work and others who have had to get disability - it all depends on how much your diseases progresses and how severe it gets. Lupus is an unpredictable disease and affects everyone differently. For some people it will remain mild and for some it will progress and get very serious.

Please feel free to ask any questions you have. Also know that we are here for support if you are having a rough day - this is a very supportive group of people.

Take care and I'm glad you both joined us.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops



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Co-Moderator: Lupus and CFS Forums

New Member

Date Joined Apr 2014
Total Posts : 1
   Posted 4/23/2014 2:47 AM (GMT -6)   
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..

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 4/23/2014 11:04 AM (GMT -6)   
Hippi, great to see you here! How are you doing?

Razor, a rheumatologist told me that plaquenil helps to control the progression of lupus. I assume that you must not feel too sick if you're willing to forego treatment. Many of us get worse over time until we are diagnosed and treated. I was too sick to get out of bed for three years. After years of treatment I am almost symptom-free and feel terrific.

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 4/23/2014 1:48 PM (GMT -6)   
Locking this thread as it's from 2007. Hippimom has not been on.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
"Life is far too important to be taken seriously." - Oscar Wilde
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