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Question about Lupus with Multiple System Involvement (mine is predominantly CNS)

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Posted 6/8/2007 4:26 PM (GMT 0)
I was wondering if anyone had CNS lupus and was later diagnosed with Kidney disease/failure.  I have had Lupus for over 10 years.  Although it has been predominately attacking my central nervous system, it seems to attack other organs or systems simultaneously.  My doctors said the Lupus is getting worse/progressing now that it has attacked my kidneys and they are starting to fail.  I am still in the mist of finding the cause of the failure.

Is this normal for Lupus to change and/or progress?  It seems to have attacked every part of my body at one point or another - Pancreas, Colon, Liver, Spleen, Ovaries, Uterus, Thyroid, Stomach, Esophagus, eyes, joints, as well as blood and numerous CNS problems, etc.  I never heard of Lupus attacking an organ, going away, attacking another organ, and then another, on and on.  Also, now when Lupus attacks, the flares are more severe and life-threatening - not just inflammation of the organ anymore.  Is this possible?  It seems to migrate, although predominantly with CNS problems.  It seems weird that it flares in several areas at once. 

Is this what the doctors mean by the disease is advancing?  Initially, I was told that it wouldn't progress.  I am very confused.  I feel like a cat with 20 lives instead of 9.  Has anyone experienced this type of thing?  Thanks again - Kristin  

Posted 6/8/2007 6:46 PM (GMT 0)

Hi Kristin.  I was diagnosed in Oct 2005, but symptoms began in 2003 with CNS issues such as loss of sensation over face, scalp and large parts of my body, vertigo, falls, stuttering, ticks, and tremmors.  If you look at my various diagnoses you can see all my effected organs.  I was healthy prior to 2003, so the progression has been rapid.  It seemed like every few months I was diagnosed with another disease.  I'm now having lung problems with shortness of breath so bad that I passed out during pulmonary function tests.  I go back Monday for more tests.  Anyway, I sure don't have near the problems you have, but I can kinda relate.  I'm sending you lots of positive energy and (((hugs))).  Let us know how you're doing! 

Posted 6/8/2007 7:40 PM (GMT 0)
Kristin,

I can't give you any answers, but I want you to know that I'm sorry to hear that you are having trouble with your kidneys now. I hope that it's situation where you and the doctors are able to control it quickly and find the cause of the failure. Please keep us up to date about how things are going and how you are feeling. I'll be thinking of you and hoping for all gooooood results!

xoxo emmie
Posted 6/8/2007 9:57 PM (GMT 0)
Kristin, I am really sorry that you are going through this too. I don't have a lot of answers, but I have read how unpredictable this disease can be and how it can affect everyone differently. I really hope that things get under control for you soon. ANy kind of organ involvement is scary, let alone multiple organ involvement. Hang in there and take care.
Posted 6/9/2007 12:46 AM (GMT 0)
Hi Kristin:

First off I'm sorry to hear that you're not doing well. (((hugs))) this is a truly hard disease to deal with. I've had lupus for almost 19 yrs now.

From my experience, my lupus can attack any organ in my body. I truly believe that I'm worsening over the years. I've got a few more diseases in addition to my lupus. I believe that three of my diseases are feeding off each other and is making me much worse than I was.

This is my experience with lupus, and you need to remember that lupus vary from person to person. Depending on what medications you take, will affect how bad your flare is and how quickly that the flare will resolve itself.

Here's wishing you the best and please keep us informed on how you're doing.

Take Care,
Barbara
Posted 6/11/2007 2:26 PM (GMT 0)
Thank you for the hugs and well wishes. Feeling better to know this can happen, the doctors kind of make it sound like I am such an oddity. (Feeling freakish enough thank you). I always run right here to make sure I'm not. Butterflake, Sorry you are getting hit so hard right off. I have been at this for over 10 years getting hit hard (I would assume more like 20 years with here and there CNS problems and the "flu"/flare thing) but only once or twice a year. I hope they can slow yours down. I guess it accumulates after a while. Obviously not all at the same time. Some symptoms stay, some resolve partially and some resolve completely. My head spins from it all so I don't look at it all at once. Still have to fight one at a time. Yeah, each time it does seem to hit harder and more damage. One seems to affect the other. Right now it is the kidneys, heart, IBS?, narcolepsy and muscle spasms. Don't know who came first the chicken or the egg yet. You just get over one organ getting it then a couple of months later you have to get use to another.

Still, happy as heck to be alive. Guess I shouldn't bawl so much. Just overwhelmed with it all and confused. Thankfully, I have you guys/gals to unconfuse and comfort me. It helps tremendously.

Love ya all - Kristin
Posted 6/12/2007 2:27 AM (GMT 0)

CNSKris said...
I was wondering if anyone had CNS lupus and was later diagnosed with Kidney disease/failure.  I have had Lupus for over 10 years.  Although it has been predominately attacking my central nervous system, it seems to attack other organs or systems simultaneously.  My doctors said the Lupus is getting worse/progressing now that it has attacked my kidneys and they are starting to fail.  I am still in the mist of finding the cause of the failure.

Is this normal for Lupus to change and/or progress?  It seems to have attacked every part of my body at one point or another - Pancreas, Colon, Liver, Spleen, Ovaries, Uterus, Thyroid, Stomach, Esophagus, eyes, joints, as well as blood and numerous CNS problems, etc.  I never heard of Lupus attacking an organ, going away, attacking another organ, and then another, on and on.  Also, now when Lupus attacks, the flares are more severe and life-threatening - not just inflammation of the organ anymore.  Is this possible?  It seems to migrate, although predominantly with CNS problems.  It seems weird that it flares in several areas at once. 

Is this what the doctors mean by the disease is advancing?  Initially, I was told that it wouldn't progress.  I am very confused.  I feel like a cat with 20 lives instead of 9.  Has anyone experienced this type of thing?  Thanks again - Kristin  

It sounds like you need to find another doctor or clinic and get aggressive treatment to suppress lupus.  You do not say what meds you have taken or what you are currently on.  Aggressive treatment for severe cases is very important. 

Don't know where you live but you should run, not walk to the best clinic or team of doctors you can access. 

It is normal for untreated or improperly treated lupus to progress and change. 

Hope you can get answers but sound like you are not from your current doctors. 

 

Bill

Posted 6/13/2007 3:14 PM (GMT 0)
Bill - No aggressive treatment whatsoever. They always just treat the symptoms until they pass. Sometimes not at all or years later (like when I had dementia it took 2 years before given medicine). I think that is why I've knocked on deaths door so much. Never been given prednisone, dr. says they can't because my immune system is shot. I heard of plaquenil but I don't know if I can take it because of my immune problem. I get severe staph and strept, etc. infections that can only be gotten through surgery or if my system was completely wiped out. I never had surgery, except when all my teeth were taken out years ago (lost teeth due to lack of oxygen to the brain), even then I wasn't allowed to have anathesia. I had no infections afterwards.

Honestly, with no insurance, I don't know where to go. I would love to move to a better area for medical care, difficult to do as a single parent and a part-time job. Takes years to get on Social Security - tried it three times. No fun starving for a year or so to get denied. Actually, it has been 2-3 years since the last time I applied and have yet to get an answer either way. I am kind of on the borderline for everything. Can't work full-time, can't get assistance (make too much $ part-time ..ha ha), by the time social security rolls around I am functioning somewhat-enough to work part-time, can't get insurance because I'm part-time.

Currently I am on Flexeril (muscle spasms), Motrin (kidney pain), water pills (edema) and Provigil (nacolepy)- all symptoms from my kidney disease. I am not taking my Aricept as my dementia/memory loss has getting progressively better. Besides I don't think it is Alzheimer's like they said, I was getting blood clots in my eyes around the same time. Usually they just give me several shots of Toradol and Rx for motrin, asprin or nerve blockers. Pretty much anti-inflammatories and hope I make it. The joy of no insurance. No hospital stays (not even when I had pericarditis), no follow-ups, no real medicine and generally no specialists. My new doctor at least consults with a specialist even if I never get to see one.

Hope to one day find a way out of this nightmare. I'd run anywhere I could, just don't know where to go or how to get there. The nearest University is an hour and a half away. Can't afford the drive, already go an hour or so away once a week for my daughter which nearly does me in. My boyfriend thinks I should go on one of the talk shows. Unfortunately, as much as I would despise that, I'm about ready to try.

Thanks for your help, sorry about the venting - Best wishes - Kristin
Posted 6/13/2007 4:16 PM (GMT 0)
Kris,

Sorry about your problems.  It is hard enough to deal with illness when you have insurance.  It is a disgrace that this country has almost 50 mil people without insurance and many more with inadequate coverage.  Tax credits do not help those who cannot work and make enough to even pay their bills.  We can spend 100s of billions to wage an unnecessary war and rebuild a distant country but cannot even take care of our own.  America is a great place if you are making it but sucks if you are not.

I am just a few months short of 65 and will be on medicare soon.  I was in a cycle where 3 companies I worked for went out of business.  When cobra ran out I was able to get private insurance (expensive) for myself.  My wife was already on medicare. 

After my illness the cost of insurance was the best bargain ever.  Last year would have wiped us out with 3 months in hospitals, 3 months of therapy, countless tests and procedures, and many doctors.  I would not have survived or recovered as well without that great....and very expensive care.

Are there any state or county programs that you might qualify?  It took me 3 tries and a lawyer to get SSD last year.  I was a quadriplegic with a grim prospect when I first applied and they still turned me down.  Better now but no where near recovered.  I could not work full time without terrible consequences.

Hope you can find some resolution to your problems.

Bill

Posted 6/14/2007 1:54 AM (GMT 0)
Kris,

I am so sorry that you have had to deal with so much. The talk show idea is interesting.... I sure wish Dr. Phil would get a clue. I am still waiting for him to apologize to the Lupus sufferers he insulted, or at least acknowledge his ignorance. I doubt it will ever happen.

One thing that concerns me.... you say that the Dr.'s give you Rx Motrin. My brother is terminally ill with kidney disease. Motrin, Ibuprofen, or any types of anti-inflammatories are a HUGE no-no for him. I need to look up why... but I know he has been instructed to strictly avoid them with kidney disease. This may be something you ask your doc next time, especially with kidney involvement.
Posted 6/14/2007 3:04 PM (GMT 0)
Bill and Victoria -

Thank you for the support. Yeah it can get scarry at times w/out insurance. My need to get an attorney to fight the next battle. I really love to work. Wish there were another way. My boss is great. Most fire me within a month or two. Been here over 2 years. He weathers my medical ups and downs and inconsistencies as a result. Very lucky that way. Tried every state program one can think of and always when they open something new (just in case). Yes, it seems very odd to have such a wonderful, strong country not be able to feed or care for all its people. Demented really. We seem to have a priority problem here in the states. Now I know how the rich get richer and the poor get poorer.

Don't know much about Dr. Phil. What happened? Everyone has an ignorant side. Maybe he needs education. Wish I had the luxury to be ignorant of what this is like. Don't know about the talk shows. But it sounds like we Lupus survivors need to get the word out more. Thing is, is that I hate sympathy. Empathy great, but that "oh poor you" stuff angers me. There is no "oh poor me" in my book. There are days I am human and need to gripe out of frustration and there are times I am human and need assistance figuring out how to do something or in doing it. We ALL require assistance to survive one way or another at some point in our lives. Part of being human. I am a strong person who has been through he_ _ and back, but never am I incapable, just limited. We all have limitations. It is just finding a way around them to survive. Well, enough of that.

Yeah, argued about the Motrin. Drs. feed it to me like candy, but said it will be okay for the short-term and that long-term use causes more damage to the kidneys. Yesterday he did put me on an ACE Inhibitor since my heart is going wacky now. Sounds like it may be good for the Kidneys too. I have to wait another 2 weeks before Charity Care kicks in then I can get tests done on my kidneys. Finally, some relief from these bills I can never pay. Still it covers very basic treatment. I.E. we may find out what is wrong, but may not treat it. Same as always. At least I can see it coming. It is a wonder I still have hair :)

I just take the Motrin when the kidney get painful and swells up. Thankfully, not too often. Thanks again - Hope you all continue to do well - Kristin
Posted 6/14/2007 8:43 PM (GMT 0)
Kristin,

Depending on where you live, there may be medical research facilities within driving distance. I used to see a rheumy at ORMF, a medical research foundation in a city close to where I live, and during the time when I was without medical insurance, my doctor did not bill me for my visits which are usually billed at $250 per visit. I did have to pay for my lab work. This was during my first real bad flare and I was scared and so sick and my rheumy's nurse urged me to call her every day if I needed to. Experienced nurses can be terrific allies.

I've attached a link to their website and am confident that if you were to call them they could help you find clinical trials in your area. You would be treated at no charge for agreeing to part of the clinical trial. The site is
www.omrf.org/

You might also get involved in a lupus support group in your city. There you'll learn about other lupus resources available in your area.

I couldn't agree more with what Bill said about the disgraceful situation of health care in our country. It falls on those of us who have the most need for medical care to have to bring it to the attention of the people who legislate policies in Washington. If that's not a compelling reason to vote, I don't know what is.

My monthly insurance premium is $850 and that's with a $2,000 deductible. And it doesn't cover my husband or any of our children. And of course the insurance companies tries to wiggle out of paying whenever they can. I'm looking forward to the year that I start receiving medicare benefits too, Bill.

Kristin, good luck in finding someone who can help you. Your boss sounds like an angel and I just hope you can find a doctor who's as compassionate.

Good luck,

Pat
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