View Full Version : dealing with lupus
11-29-2008, 08:14 AM
Hi to all my Lupus brothers and sisters. I am a 37 year old mother of 3 and was diagnosed with Lupus 5 years ago. My primary symptoms are edema, ascites, chronic headaches, numbness in my hands, arms, legs and feet that comes and goes, petit mal seizures, joint and bone pain and peripheral weakness. I have recently been told by my neurologist that my bloodwork shows that I am in remission and that I should be feeling fine. I still have a butterfly rash and all of the symptoms, so how can I be in remission? She actually suggested that it is all in my head, but your brain can not make up pitting edema. I am so frustrated. I was taken off NSAIDs because even though I do not have any renal involvement (yet), my nephrologist wants to protect my kidneys. I have been offered narcotics for the pain but turned them down. I work night shift and have 3 small children. I can barely function as it is let alone on narcotics. I take Plaquenil and blood pressure meds along with diuretics that do not help at all. Has anyone ever heard of edema in lupus? It seems like I am the only one.
11-29-2008, 08:55 AM
Hi Purple Butterfly,
Welcme to the site. My name is Kathy. I will be 50 in December and I have SLE Lupus and a host of other auto-immunes big time. I am wondering if you are seeing a Rheumatologist. I think that is who you should be seeing along with the Neurologist. It sounds like you could have renal involvement with the adema. Have you had a kidney biopsy done or any other types of tests to look for renal involvement. Ascites sounds like you may have liver involvement too. There will be others with more information that could help you. I have adema at times too in my legs and the numbness in my hands and feet due to peripheral neuropathy and Pernicious Anemia. I hope that someone will come along with more information. Please keep posting.
11-30-2008, 03:00 PM
Hi Purple Butterfly;
I have to ditto everything that Kathy said. If you are having edema, it sounds as if your kidneys may not be functioning 100% and it is possible that your liver is also affected.
The most common kidney disorder in Lupus is Lupus Nephritis. Lupus nephritis is a result of inflammation in the kidneys that is associated with an overactive immune (defense) system. There are many forms of kidney disease that are referred to as lupus nephritis. Each form is distinguished by characteristic patterns of abnormalities that can be defined by a kidney biopsy. In addition to the numerous unique forms of lupus kidney disease, other types of kidney diseases that are not from lupus can sometimes occur in a patient with lupus.
You did not mention what type of drugs your doctor suggested for you. Treatment for lupus nephritis can sometimes be initiated without a kidney biopsy. Corticosteroids, such as prednisone and prednisolone, are usually the initial treatment for lupus nephritis. Did your doctor mention these treatments to you? Also, the immune suppression medications that are used to treat lupus nephritis include azathioprine (Imuran) and cyclophosphamide (Cytoxan). Recently, the immunosuppressant drug mycophenolate mofetil (Cellcept) has been used successfully to treat lupus kidney disease.
With reference to the narcotic pain medication your doctor suggested; the most common ones are: codeine (e.g. Tylenol #3); propoxyphene (e.g. Darvocet); hydrocodone (e.g. Vicodin); oxycodone (e.g. Percocet, Oxycontin). These are listed in ascending order of potency. All narcotic agents have a dissociative effect that helps you to manage pain. They do not actually deaden the pain, but they work to dissociate you from the pain. Narcotic medications can be highly effective in treating pain if used for short periods of time (less than two weeks). Most doctors will not prescribe them for longer than that (unless you are suffering from chronic pain). Usually, after the two weeks and the pain has subsided some, doctors will switch you to safer pain medication.
In your case, it appears that you must first find out if and/or how much damage there is to your kidneys and liver. Then, a treatment regimen must begin to stop and/or reverse the damage. Until then, you might want to re-think the pain medication that does not further damage your organs but does provide you with relief.
Best of Luck and I hope that we have been helpful to you.
Peace and Blessings
Hi Purple Butterfly,
Double ditto for what both Kathy, and Saysusie have said. Their advice is rock solid, and can be trusted. I can't really add anything, but I did want to welcome you to our group. I hope you find the answers you need ASAP.
12-01-2008, 04:45 PM
Hi Kathy, SaySusie and Rob;
Thank you all for the warm greeting and the info. Recently I have had a renal ultrasound and 24 hour urine and bloodwork to check liver enzymes and kidney function. All were normal. I have been seeing a rheumatologist for 5 years now. I was not satisfied with the answers I was getting, so I went for a second opinion and got the same answers. Everyone shrugs their shoulders and say they do not know what is wrong with me. One doctor even suggested that all of my symptoms are in my head. You can not make up edema in all extremities. It is definately there. The pain is very real, too, as is the butterfly rash on my face. There are days it seems like my brain can't remember how to tell my legs to move, my arms are numb. I have these "staring spells" that my rheumatologist has labeled petit mal seizures (with no testing or medication). Now I am scheduled to see a cardiologist to see if there is something wrong with my heart. This sounds weird, but I almost want them to find something each time I go so that my symptoms and feelings are justified. I feel like I am losing my mind and all they do is laugh and say I am a medical mystery.
12-01-2008, 05:50 PM
Hi Purple Butterfly,
I feel so bad for you, because I have had the same things with doctors happen to me before I finally got diagnosed. I finally had to get nasty and demand an answer. I think that it is disgusting the way that the doctors treat people. I would try my best to see a different doctor and tell them right out that there is something darn sure wrong and I am paying you for your services so I demand to be treated with respect and to be listened to and not told that there is nothing wrong. Lupus is a terrible disease and unfortunately the doctors tend to dismiss folks with this illness due to the fact that this illness presents in so darned many different ways and it affects every person differently. The immune system is so complex and this disease mimicks so many different illnesses and a lot of doctors totally miss the boat if you know what I mean and it is not right, because then the person that is sick with this illness goes left untreated.
I don't want to scare you, but since the kidneys and liver tests were normal, it could very well be affecting the heart. Any problems with the heart could cause Adema also. I hope that you can get some answers and fast. Please post and let us know what they find out at the cardiologists ok.
12-01-2008, 05:56 PM
I forgot to ask are you on any medications for the Lupus? I also started thinking and wondering if you have Peripheral Neuropathy and have they tested you for that too? I am just wondering is all.