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View Full Version : My life with SLE, Nephritis + and in bad flare



PuertoRican-mom-of-2
03-03-2007, 05:01 AM
Hello everybody. It is 5:38 AM here and I've been up scince 3. Can't sleep, I think it's the 55mg of prenisone I've been on for a few weeks now. I have sleeping pills, but I try not taking them too much scince there are plenty other meds in my system. So here I am.

I have SLE. Was dianosed in May 05, three months after the birth of my daughter and about two years after I started having symptoms. I have stage three nephritis which appears to be progressing. A year ago on my 24 hour protein I was spilling 500mg and last week it was up to 2271mg. I have a second biopsy scheduled for March 12 to see if I need further treatment. I have been on Cellcept scince October, but it doesn't seen to be helping anything. I have been in a bad flare. My ds anti-DNA are >200, my compiments are low and I recenly spent 10 days in the hospital. First I was addmitted because I had a high fever, swollen lymph nodes, sed rate 74, spots on my lungs and inflamation around them, severe joint and muscle pain to the point that my husband had to wheel me to the hospital. I just felt horrible. Every test imaginable was preformed looking for Pnemonia or other bacterial of viral inffections. Everything came back fine. I was given antibiotics and 60 mg of prenisone. I spent 3 days there and was discharged to go see my Rheumatologist ( no rheumatologists go to the hospital I was at). I was home 1 day and had to return because I got this intense pain in my right arm. It was so intense, not joint or muscle pain, somthing different. It radiated throughout my entire arm and would not stop. I delivered two children without pain meds, I am not a whip. This pain was bad. I took countless Lortab 10 mg and tried everything, nothing made it stop so 30 hours after my discharge, I was back. Morphene helped the pain. I had experience this pain twice previously this year, just not as bad. Once in both my arms and once in the left. I had the left one ultrasounded and all was normal. This time around I had the right one ultrasounded and there was a superficial clot (I also have anticardiolipin antibodies and take asprin daily) but the docters say that didn't cause that pain. I aslo had my shoulder MRIed and it showed tendonitis, but they said that didn't cause the pain either. They have no idea what it is. While at the hospital my sed rate normalized and I was discharge 7 days later with 60 mg of morphene for pain, but no answers, and no plan on how to fix any of it. I have questioned vasculitis here and in the past. I get numbness in my face and head which lasted 2 months one time. Scince then the numbness only lasts from a few minutes to a few hours. I did have a slightly elevated ANCA of 8 but my docters say it's not vasculitis because my sed rate normalized, on Monday it was 74, on Saturday 26 and on Sunday 16. I went to a Neurologist today and he ordered a nerve test on my arm. We will see if that shows anything. All of this is so confussing. My docters just say " I don't know, you are a puzzle." That is reassuring.

Well enogh about the negative. I am blessed in so many ways. For starters, I have two wonderful children. An almost 8 year old boy and a two year old girl ( who celebrated her second birthday in the hospital with me). They are healthy and awesome. They are my pride and biggest joy. I am truly fortunate to have them, especially my daughter who was concieved after I had Lupus symptoms. I was told early in my pregnancy, after I had an ultrasound in the hospital because I was bleeding, that I would miscarry her because there was a blood clot in with her. I didn't miscarry and when I was four months along and the docter decided that it was a viable pregnancy he sent me to a specialist who monitered her closely and started me on Heparin injections twice daily to prevent clots. Fortunately I was able to carry her full term with my wonderful prenatal care. She is a beautiful blue eyed, blond curly haired little girl ( both my son and I have dark brown hair and brown eyes). She has the most wonderful, happy disposition. I am blessed. I am also blessed with a wonderful, loving, caring, good looking, hard working great insurance carrying husband who loves my dearly. I have two wonderful step children. Great parents, inlaws, siblings, aunts, uncles, cousins, and friends. I am blessed.

Although I rarley post online I do visit here often. I have read many of your stories and I admire you strength, courage and wisdom. It is comforting to know that there are others out the who understand. I'm sorry that this has been so long. Thanks to all who have taken your precious time to read this. Any comments, ideas and suggestions are greatly appreciated, especially with regards to the arm pain. I wish you all the best. Stay strong and know that there are others out there thinking and praying for all of you. Betsy :D

angela
03-03-2007, 10:37 PM
my thoughts and prayers are with u. hang in there :wink:

mnjodette
03-04-2007, 05:33 AM
Betsy, it sounds like you are blessed with a wonderful family - I'm so glad for you! But you are challenged, like so many of us, with this illness that seems to defy description sometimes. I guess all women want to be a bit 'mysterious' but no one likes to hear "you're a puzzle" from their doctor! I pray that they find some answers for you soon, Betsy. In the meantime, keep checking in with us. I'm glad you decided to post. Please do that whenever you need a place to share what's happening to you. We learn so much from one another, and the support is so important. I'll keep you in my prayers, Betsy.

Jody

PuertoRican-mom-of-2
03-07-2007, 11:50 AM
Angela and Jody

Thanks for your kind words and prayers.

"Mysterious" I like that. :P

Betsy

dandoon_88
03-09-2007, 01:21 PM
Hello Betsy,

I am sorry you have to go through this, but it's great that you have a loving family to support you. I also have nephritis, for almost three years now, and I remember going through some of what you're experiencing -- high prednisone dose, proteinuria, high autoantibody levels. I've been on Cellcept for long, can't remember when I started it.
I started having trouble with my kidneys 6 years ago but was diagnosed with lupus 3 years ago. The last time I flared badly and spent 2 months in hospital was after I was diagnosed via a biopsy. I am class 4 nephritis. I underwent 14 sessions of plasma exchange twice to remove the auto-antibodies from my blood. I lost a lot of weight that I had put on because of kidney dysfunction. Now I'm down to 5mg of prednisone.
I'm hoping things get better for you soon. And always remember, you're not alone. You may be suffering, but you'll eventually get there. I think of lupus as a friend who may be harmful at times but good when you learn to accept it in your life and body.
All the best, I hope you get well soon and find what's wrong with your arm! Do keep us posted.
With love, Dina

PuertoRican-mom-of-2
03-14-2007, 05:04 AM
Thanks for your reply Dina. Can you give me any more info on plasma exchange? I am not familiar with it, but it seems to make sense. If the antibodies are what is causing the damage to my organs, then why not try to remove them.

I had my second biopsy an Monday. All went well, no complications and I came home yesturday. I will see my Nephrolosist on Wednesday and get the preliminary results.

I got new antibody reults and my anti ds DNA are 564, RNP 40, SM 27, Sjogrens A 40 and Sjogrens B 11. The only one that I had in the past was anti ds DNA and my numbers were >200. That was done at a different lab, and maybe the hospital just gives a more accurate count, I don't know. I guess I will know more on Wednesday.

Does anyone know what compliment levels should be? I did some searches and couldn't find the numbers. There isn't a reference on my labs and I am staying at my moms for a few days for the added help and don't have any of my reference books here. My numbers are CH50 of 44, C3 of 72 and of C4 11.

Thanks to all. My thoughts and prayers are with all of you. Betsy

dandoon_88
03-14-2007, 05:16 AM
Plasma exchange, or plasmapheresis, is a procedure that removes plasma from the blood and replaces it with new plasma fluid.
Blood is removed from the patient (a small amount at a time) and separated so that the plasma can be discarded.
The red and white blood cells and the platelets are returned to the patient, along with the replacement fluid. (http://www.ich.ucl.ac.uk/factsheets/families/F030073/index.html)

With lupus, it removes the autoantibodies which are causing organ damage. An intravenous catheter is inserted (below the collarbone in my case) and you are connected to the plasma exchange machine during the procedure, which takes up to 3 hours. I had 14 sessions of plasma exchange while staying in hospital when I was first diagnosed.
It is a very effective treatment and my weight decreased rapidly after the first few sessions.

I think it is used in severe lupus, when the diseasen is very active and other treatments do not work.

It is not painful or anything, but I used to feel very cold and shiver at times. And you may feel tired afterwards.

When I do C3 and C4 tests the lab results come back with a reference range, but it's different from one lab to another; I don't think there is a standard count. Maybe you should ask the lab technician or your doctor.

I hope that was useful!! All the best.

PuertoRican-mom-of-2
03-18-2007, 01:58 PM
Dandoon, thank you for your reply.

I mentioned the plasma exchange to my rhematologist on Friday and she said that she had never heard of it being used for lupus. I asked her about the Cytoxin and what it would do . She said it would slow the immune system and hopefully I would stop making the antibodies. I went over the logic of removing the antibodies that would otherwise keep cirrculating in the blood until they deposit themselves and she agreed with the logic but didn't have any answers. Dandoon, where did you have it done?

Has any one else ever had this treatment?

Thank you for your time.

MARYCAIN
03-18-2007, 02:30 PM
Hi, Betsy - I've had plasmapheresis too - in my case it was for hyperviscosity syndrome related to the lupus. It's just a temporary "fix" - it doesn't turn off the abnormal antibody production, so your body just makes more antibodies to replace those removed through the plasmapheresis. But it can be helpful in situations where someone has severe complications from lupus and there isn't time to wait for other therapies to work. It has not been shown to be an effective long-term therapy. The cost is also an issue for most people - it requires several sessions, at a cost of 1,000 or more per session. Ny first "round" of therapy was over $10,000. Since plasmapheresis is still not a generally accepted treatment for lupus, most insurers will not cover it except in very limited circumstances. And while complications from the procedure are rare, they can be serious - there is a small risk of heart attack or stroke. So, right now at least, the procedure is mainly used as a "bridge" therapy for very serious lupus until immuno-suppressant therapy kicks in - it's not used as a replacement or substitute for other therapies.

PuertoRican-mom-of-2
03-20-2007, 08:18 PM
Thank you for your response. I did a goggle search where I typed "plasma exchange lupus" and there were several arcticles about it. It may be promising in the future for people with very high antibody levels. I am going to see mynephrologist tomorrow to get the results from my biopsy. I wish you all the best.

PuertoRican-mom-of-2
03-24-2007, 05:09 AM
I got my kidney biopsy results Wednesday. I am at stage four now. They want to start treating with Cytoxin now. All of this is scary. All the meds that I am currently on have done nothing. It seems like the doctors know so little. I think that I am my nephrologists only lupus patient. He's a real nice guy and supposed to be the best in town. He's does care about me and has done research to find the best treatment. He has also called two of my other doctors to coordinate my treatment, so he's definatelly tring to help me.

My rheumatologist now does think I have CNS Vasculitis too. I have been questioning it for a few months now. I have a MRI/ MRA ( not sure what MRA is) lined up for the week after next. Although, I know that the Cytoxin should help with that too.

My doctor actually wants to start treatment next week, but I m putting it off because I am going to Disney World with my kids. I am so excited. It is the best place on Earth for me. This was a pretty last minute trip that seems meant to be. Financially we could'nt afford a lot and everything seems to have just fallen into place. The hotel rate was a great Florida residents rate. We will stay four nights on Disney property. The Disney tickets are free thanks to my sisters boyfriends mom who works there. It will be great. My sister and her two boys will come up with me and my kids and then my husband and my stepkids will come up Thursday. On Friday we got standby tickets to the Ellen Degenerous show. That will be so cool. I have taken all the precations. I OKed it with my doctors. I have all my scipts and meds. I rented a scooter with a canopy. I have a hat, appropriate clothes and lots of sunblock. I think that we are ready and I am sooooooooooo excited.

MARYCAIN
03-24-2007, 07:37 AM
Hi, Betsy. Yes, the plasmapheresis can lower your antibody levels quickly - when I had it done, basically, I had so many antibodies in my blood that they were causing the blood to be so thick it couldn't circulate, and it was causing heart and other circulatory problems problems. Since hyperviscosity syndrome is one of the conditions where plasmapheresis is the best critical care treatment, my insurance did pay for part of it. It did help until the other meds kicked in. If it were less expensive, it might be a viable option for more people. Hopefully the technology will improve so that it won't cost as much.

The MRA test is magnetic resonance angiography - it can be a very uncomfortable test but it's not as bad as it sounds. It involves having a special dye injected into your arteries and then undergoing a high resolution magnetic resonance scan, to look for any problems. For most people, injecting the dye is the worst part - it can sting and burn, and it can make you feel very hot as it circulates. These are all normal reactions. But if you have any type of allergies, especially to shellfish or iodine, be SURE to let the technician and the doctor know - you may need premedication to reduce the chance of an allergic reaction. And if you notice any shortness of breath, itching, or chest pressure or tightness after the dye goes in, tell the radiologist right away.

If you are claustrophobic, being in the MRI scanner can be nerve-wracking and it's very noisy, so ask for headphones and music. You will have to lie absolutely still during the scans - moving throws the machine off and the scan won't be clear enough to be useful. If you have any time of metal implants, like a surgical pin, be sure to let the technicians know beforehand - you may not be able to have an MRI. If you are extremely claustrophobic, which I am, some hospitals have an open scan MRI which is less confining, so you might want to ask about this.

I have been on and off cytoxan for several years now, and it's a very effective drug for both kidney and neurological involvement like vasculitis. It can have some side effects, but they are mostly manageable. Nausea, vomiting, fatigue, bladder inflammation, cystitis, possibly hair loss are all things you might experience. Your doctor will be monitoring your response carefully, and will prescribe meds to help with most of the side effects. And if you lose your hair, it does grow back - mine came back curly and a different color! So please don't dread it too much - the drug can be a real lifesaver.

PuertoRican-mom-of-2
03-25-2007, 11:19 AM
Thanks for all the info.