I've had kidney involvement with lupus since 1992. Or as the docs say, Lupus Nephritis. What it means is the lupus (immune system gone awry) is attacking the kidneys. Not so long ago, say 40-50 years ago, this was a death sentence.
But nowadays, this attack can be halted, and even reversed, with drugs. I've had my kidney function go down to somewhere around 25-30%, told it would never improve, and to be expecting a transplant/ dialysis within 5 years (that was 6 years ago).
In fact, my function has gone this low 3 times (with each lupus flare), and has always returned to normal after getting the lupus under control. The first time we used just prednisone. I also got chelation therapy from an alternative practitioner and went natural with my diet, avoiding gluten and making my own juices. I was on prednisone for about a year, starting at a high dose.
The second time I got sick (lupus flare as they say), I had prednisone, 4 blood pressure meds, chemotherapy (cytoxan) and some other drugs that were for other problems (no fun drugs like marijuana though- gotta move to California!), as well as chelation therapy, diet change (candida diet), herbs, and lots of acupuncture. Again on prednisone for about a year, the other drugs for 1-2 years.
the 3rd time, i refused the cytoxan because it made me so sick, and it has been controlled this time with prednisone (for about a year), cellcept (on this indefinitely- about 18 months so far. it can be very expensive, by the way, depending on your insurance), another blood pressure med, a few other unrelated drugs and acupuncture and diet change (low sugar, low salt, eliminate nutrasweet, avoid gluten). I always go back to my crappy diet. Will i ever learn?
I've had this disease since 1992, and I haven't had to go on diaysis or get a transplant yet.
I do know someone who had lupus, got a kidney transplant, is on some drugs to keep her from rejecting the organ, and hasn't had a recurrence of the lupus for over a decade! so, a transplant is not the worst thing that can happen to you. it was a new lease on life for her. meanwhile, I'm doing OK. I don't have the verve I did when i was completely healthy, but i've found a balance between doing stuff and resting, and hopefully will avoid a 4th "episode" as long as possible- maybe forever? It's possible (must not eat crap. must not eat crap.)
A note on the transplants, and this is really messed up. If you use medical marijuana, you may be refused for an organ transplant, even though the marijuana was prescribed by an M.D. The federal law trumps the state laws in this area. So, if you're in pain and also a candidate for an organ transplant, you're better off using Percocet (even though is causes constipation and is cut with Tylenol, which is toxic to your liver). SO, pop all the pills you want just don't smoke and plants.
So, anyway, if you've got lupus, and lupus nephritis, you'll be OK if you can get your hands on some prednisone (which believe me, they're happy to hand out. My cat and I were on prednisone at the same time once. His was cherry flavored. mine tasted like rat poison. or what i imagine rat poison would taste like). Prednisone sucks, but it works, and it's cheap, and you'll live to tell the tale.
18 comments:
Hi. I left some comments a few months back. I have since gone to a new rhueme and claims that I do NOT have lupus. :) I definitely have Sjogren's Syndrome and something else going on with me. My kidney function is declining STILL and I now have to start taking Procrit injections ???? I am still at CKD stage IV and my kidney biopsy 1 1/2 years ago proved that I had moderate to severe interstatial nephritis (SP) due to Sjogrens. I have thought for the last 2 1/2 years that I did have Lupus, so I am still going to comment on here about what I am going through. Anyone out there like me?
I am afraid that my kidneys are going to give up in the next couple of years.
strange, i seem to be seeing a trend with folks online that doctors are now hesitant to diagnose people with lupus. i can't imagine why, because I am not a fly on the wall in their offices hearing the things that they are not supposed to tell us. maybe they are being steered away from using the "l" word because there are so many of us that it's actually an epidemic. so to keep from scaring the public, they fudge the numbers? or to keep people from being able to get disability? i just can't imagine why, with your symptoms, esp. the kidney involvement, they wouldn't say "lupus."
have you done a "self-diagnosis" with the list of 11 classic symptoms on the lupus foundation website?
these days they try to say that the blood tests are the thing, but they have always said in the past that the blood tests are not conclusive- you can have false positives and false negatives, so they diagnose by symptoms.
pS what are they doing for your kidneys? prednisone? anything?
I have done the 11 classic symptoms and I have 7 or 8 of them. As far as my kidneys...we have done prednisone a good bit and it is not making my numbers go down. I was on 80mg the last time this past winter. I take 6 pills of sodium bi-carb a day and I am getting ready to start the procrit injections. I also take 20mg of lisinpril. I am going to MUSC (whenever they call me to schedule a few days for me to get checked out) I should here back from them next week. I will be seeing a rhuematologist and nephrologist to check me out throughly. We are hoping that they will be able to help me.
My blood tests show that it isn't Lupus. (at least right now) I have a high RA factor and I have a lot of imflamation showing up. Sjogren's gives a false positive on RA. I have muscular aches and pain...not so much joint pain. I am also on Ultram on an as needed basis.
Thanks for your comment on my blog. I've linked your blog on mine. Have a good day!
Hey Carla;
I just wanted to let you know that you have been listed on my blogroll since I started blogging almost 1 year ago. I also have lupus, and I love your great attitude. I am struggling with heart and kidney involvment right now, so its great to know someone else who has experienced this. OUCHHHH! If I included the credits of who created the lupus cartoon you have on your blog, would you mind if I borrowed it to put on my blog?
My doctor also refuses to put lupus on my chart, because it would keep me from getting any decent health or life insurance in the future, so my Dr. calls it chronic pain syndrome. Also, they are not legally allowed to put "lupus" on your chart unless you had a positive SLE test while you were in their care, and only 40% of lupus patients will ever have a positive lupus test, because so few labs know how to do it right. It has to be tested at the same hospital that the blood is drawn at. If the blood is sent away for testing, it won't work, because the blood coagulates first. I have had many positive SLE tests, but this Dr. has never seen one, so legally can't write it on my chart. Now they say that if you have 11 of the 30 or so symptoms, they will treat you as if you have lupus. I find doctors getting less compassionate and patient with chronic illness, so I have had to learn how to care for myself with natural/alternative treatments, which suit my system better than prescriptions anyway.
Bless you!
Sheila/Bluebirdy
Hello, I stumbled upon your blog by accident (as I do most good websites). I applaud your efforts to learn & educate others about this horrible disease. I was diagnosed with SLE in 2003 but, it was suspected as the cause of my health problems since 1995. I've been to hell & back with this disease. Many other diagnoses have been added since then that keep things interesting, to say the least.
Hold on to your sense of humor like it's made of gold. It's the only thing that has gotten me through...that & the fact that I'm too hard headed to give up.
I have started my own personal crusade to educate others & help those who have already been diagnosed. I've spent years researching the disease & I'm happy to share what I've learned with others.
I also wanted to invite you & everyone else to a great website that I moderate at: www.butyoudontlooksick.com. The owner & founder of the site, Christine, has been dealing with lupus for years. It's great, informative & extremely supportive community of people with various "invisible" diseases. I'm LupieLisa on the site BTW, and we would love to have you as a part of the community....(Don't worry, we won't make you eat a live chicken on your first visit or anything) All are welcome there!
wow. that is really a shame. it angers me to hear about this trend - doctors refusing to put down lupus as a diganosis. why would they want to make life harder for us? do they jsut not want the extra work of having ot write a letter in case we go to court? is the governement making their lives more difficult if they report too many lupus cases? where is the root of all this? why would our doctors want us not to be able to get health care? what kind of doctor would wnat us to end up in dire straits and to refuse to tell us we have lupus when he/ she knows good and well that we have lupus? dopn't they know we already ahve enough emotional turmoil without this kind of garbage from our so-called health care providers?
don't get me wrong, i've encountered more than my share of rude, invalidating and completely useless doctors, but refusing to write down lupus when they know it's lupus- tha'ts just a new low in being completely despicable. what about that oath- first do no harm????
on the brighter side-
thanks sheila for adding me to your blog roll, and vicky for the hello and invite. i of course have been to butyoudontlooksick.com and like anyone who has read it am a big fan of the spoon theory piece.
You asked what kind of Dr. would do these things? Canadian ones that are overworked and underpaid and are told what to do by the government. Last week I lost my vision for 3 days, my Dr. said it was M.S. caused by lupus, but again won't put it on my records. The system here is very abusive and neglectful. I have heard some inhumane statements between doctors and nurses when they didn't know I could hear, like "If we document that there is a problem we have to treat that problem, and I don't know how to treat it." Another said "The gov't has banned Sheila from any more expensive testing or treatment except for IV fluids when dehydrated and the rare pain shot, because she is just a disability patient", so I will be seeking care with alternative/natural treatments and try to avoid the abuse at all costs. Last July I was told I would be dead by this July, so in 2 weeks (end of July) I can think "neener neener neener" to those docs. lol. Technically they were right because my heart did stop but I am still here! I thank God for the internet, to meet friends like you who share the same struggles!
Bless you!
Sheila
They didn't give a firm diagnosis because I didn't have enough symptoms yet....even though they were pretty sure I had it or that it would eventually develop.
My first experience with it was very life threatening case of immune thrombocytopenia purpura at the end of 94'. The other symptoms developed over time.
I was also a part of the problem because I'm the queen of denial. I was terrified by the thought of having lupus & spent quality time running away from the doctors trying to help me. I had a very active life & successful equestrian career that I wasn't giving up for any disease. Funny how things change. I can't even lift my leg high enough to touch the bottom of a stirrup now.
I know from talking with many others that diagnosis is still a very hard thing to get. Some of it can be attributed to the fact that lupus mimicks so many other diseases & that there is no single blood test to confirm the disease. Diagnosis must be based on testing symptoms & medical history. It's a very devastating disease that they don't like telling anyone they have it unless they are 100% sure.
Another factor is that doctors are reluctant to put in your records because it can be used against you for medical coverage & other insurances.
I don't think it's against the law to put it on your records (not in the states anyway), based on negative test results, as another person posted. 5% or more of people with lupus have negative testing & never will test positive for it. This is called Seronegative Lupus. Even people who have already been diagnosed get negative blood work because of remission & treatments.
Glad to hear you've already visted BYDLS and that you know all about the spoon theory. The site has helped me a lot in dealing with the many faces of this disease.
oh by the way bluebirdy you're welcome to use the cartoon on your blog, just pass on the credits. it really says it all doesn't it?
i think maybe i misinterpreted something- perhaps the drs are trying to protect people by not writing down lupus? that way we are not labeled with a pre-existing condition, making it impossible to get life or health insurance? is that what you were trying to get across to me?
on the other hand, what you overheard is infuriating. "just a disability patient"
i have been there. i was an indigent patient (no insurance, no money) for about 2 years and docs had no problem leaving folks like me in the waiting room for 5 hours before seeing us for 5 minutes. not even exaggerating!
Hi, come visiting hope you get to feeling better- Happy Singing...
www.chronicchicktalk.com
Hi! I hope you are doing ok. A second rhuematologist has confirmed that I do not have Lupus. I have Primary Sjogrens. The funny thing was that I always claimed that SJS was the lesser of the two evils. In my case....SJS has gotten the last laugh. I am being referred to a live kidney transplant list. I am living proof that SJS is not as innocent as they claim it to be. I just went this passed week to speak with top notch nephro's and Rhueme's and they feel I need to go straight to a live transplant. No dialysis. My GFR is 16 right now. Not good, but hopefully my kidneys will hang in there until we get everything lined up. I am scared for the transplant and the finacials. My insurance will pay for my part of the transplant and not for the donor's part. (I think). I have been told that I may qualify for medicare even though I am only 37. They would cover the cost of the donor and some things my regular insurance won't. They cover 36 months after the transplant. Anyone familiar with this? I am worried. I also started taking procrit injections for CKD anemia. They have made me feel much better than last month.
Vicky, I am sorry you have to have a transplant! But are you sure its the sjogren's that caused it and not the lupus which you could have had for many many years undetected? I see many times in stores jars for people to donate their change for people who are getting transplants, and every penny adds up! Maybe your friends would do that for you. Put jars/cans in stores with a donation picture/explanation on the front. I know you can buy the donation cans online somewhere. I'm heading in that direction with my own lupus and 8 other diseases from damage lupus did.
Bless you.
Bluebirdy
OH Vicky I misread your letter. So sorry! You do NOT have lupus, you said. I am not so sure. Only 40% of patients EVER get a positive lupus test even once in their life, after repeated testing because most labs don't know how to do it correctly. I have been to so many doctors and some say yes and some say no even though a University medical center said yes I have it...so don't be so sure that it isn't lupus that destroyed your kidneys. I have sjogren's also and I will have to study more but I never heard of it doing kidney damage.
Blessings
Sheila
vicky- yes you can qualify for medicare. the way it works is that you qualify first for medicaid (this is based on need, both financial and medical). after you are on medicaid for 2 years, if you are still in need, you are switched to medicare. *or* if you are approved for social security disability, you get medicare with it. the place to start is with your county social services.
Thanks for your input. I had a kidney biopsy done in Jan. 07 and it claimed that it wasn't Lupus nephritus...it was renal tubular acidosis that concur's with primary sjogrens. There was no sign of Lupus in the kidney. It is very rare that this happens...but it does. I have met a few others on Sjogren's World that are going through this.....although not to my extent.
BTW- Prorit injections have made me feel much better. I have energy...not doing cartwheels yet! :)
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