Help I am new here
Hi my name is Christine. I was diagnosed with
Glomerulonephritis, Membranoproliferative type 1 when i was 16. The doctor told me i couldn't have kids (would be too dangerous),, wanted me to start prednisone but i was young and dumb and didn't want to deal with the side effects. I became preg in 94 was on bed rest the whole time...again in 98 preg with twins and again a rough pregnancy ...i had alot of problems with joint pain and muscle aches and had no idea what it was from....over the next few years i just dealt with it...I went round and round with the drs this past year with unexplained fevers, joint pain etc....they told me i had lyme disease, strep infection..etc. Finally i saw a rheumy who told me i had LUPUS...My kidney specialist said he doubted that i had it but was going to perform a biopsy to be sure.. to make a long story short he confirmed it and also diagnosed me with lupus nephritis. I am having so many problems with joint pain, fatique, headaches, mood swings. I have so many different medsi just need someone to talk to ...I feel like no one is explaining things to me
Here is the list of meds i am on and why
1. Penicillan 1500mg a day (strep infection that won't go away
aso titer score of 571)
2. Lipitor - cholestorol
3. Lisinopril - high blood pressure
4. plaquenil - lupus
5. cellcept - lupus nephritis
6. prednisone - 40 mg had to stop cause i keep vomiting after i take it
7 celexa- to keep me from going crazy i think haha
8 vitamin, calcium, and acidophilis (because of the antibiotic)
i just wish i had more information. I hate taking all these pills
i feel like a 90 year old lady and i am still in my 20's
If anyone has lupus nephritis please talk to me and share your story i would truely appreciate it.
Welcome to our site. You must not let yourself become too depressed or allow yourself to become over stressed! I know the pain can be unbearable at times (I have SLE and FM and am ALWAYS in excrutiating pain!).
Your condition - Lupus Nephritis - is not uncommon. It is a kidney disorder that is a complication of SLE. It is related to the autoimmune process of LUPUS, where your immune system produces antibodies (antinulcear antibodies - ANA, and others) against your body. Parts (complexes) of these antibodies and their complements accumulate in your kidneys and results in an inflammatory response (swelling and pain). Kidney problems in LUPUS are usually indicated by a high level of protein in the urine and/or hemoglobin in the urine. About half of all lupus patients have some kidney involvement (called renal involvement - the word renal refers to the kidneys). Continuing deposits of antigen-antibody complexes in the glomeruli (the tiny tufts that comprise the kidney's filtering apparatus) can eventually cause total failure of the kidney function. The result is that waste materials remain in your circulation, instead of being flushed from the body.
Your doctor's are correct in continuing to monitor your kidney function. There are several tests that they use in order to determine how well your kidneys are functioning, including a kidney biopsy. WHen your kidney is inflammed, your blood pressure may also rise, so it is important to check your blood pressure regularly. Also, your doctor's may occassionally ask you to take a "24 hour" urine test (you collect all of the urine that you have passed in a 24 hour period) in order to determine the amount of protein in your urine.
Both nephritis and SLE are treated with Corticosteroids and other immunosuppressive drugs like the ones you are taking. But, even if your kidneys do begin to function improperly, there are several treatments that have been successful. Some doctors use Cyclophosphamide (Cytoxan) along with corticosteroids to treat Lupus Nephritis (but only when the condition is severe). THere is a new drug called mycophenolate mofetil (MMF) which has been having some success with Lupus Nephritis. I don't know much about this drug except that they claim that some patients have accomplished remission with its use!
You seem to be pretty knoweledgeable about your medications and their usage. I know how hard it is to face all of these pills every day (my daughter was taking 21 pills per day. I am taking 11 pills per day! ), but we do it because we know that we must. Almost all of us are also taking some sort of anti-depressant to manage our mood swings and our depression. So, you are not alone.
We are here to provide you with information and support. Let us know what specific questions you have and we will do our best to answer them for you!
I hope that I have been helpful to you!
Peace and Blessings
I am having a terrible time dealing with the pain of this disease. What else can be done besides exercise and pain pills? Do any of you go to a pain doctor for it? take Care