View Full Version : Rookie here
10-23-2008, 07:40 PM
I just wanted to give an introduction and let you know that I look forward to learning more about Lupus Nephritis. I have been diagnosed with Class IV Lupus Nephritis. I'm not going to lie, last year was the worst of my life, but after some intense findings things are finally settling down. It took over 2 years, many tests and a couple trips to the ER before they figured it out what I had. I like to think I've made it thru the worst and things can only continue to get better from here on out. Thanks for your time.
10-24-2008, 03:37 AM
Just wanted to say welcome. I look forward to getting to know you better.
How are you feeling now?
My name is Robyn. I am still kind of in limbo waiting for the docs to give me an official diagnosis. I am in between appts right now.
Chat with you soon.
10-24-2008, 03:58 AM
Welcome to the site. I hope that you are feeling ok. I am just getting over a flare and am finally feeling better. I hope that you keep posting. There are a lot of good folks that come in here with a lot of good information. I look forward to getting to know you.
10-24-2008, 06:29 PM
Well, my story is when I was 24 I woke up one morning in July and couldn't move an inch. It hurt on every part of my body. It lasted for more then a week so I decided to get checked. I was sent to a rheumatologist who just kept puting me on tons of meds that weren't helping. I still had painful flare ups mostly in my hands, wrists, knees, ankles. I switched Drs cause he was doing nothing for me and we started getting things under control and then more and more flare ups and side effects kept occurring. I had been getting up to go to the bathroom 3-4 times a night and told that to my Dr. and right away he said it's my kidneys. So I was sent to a Nephrologist. I had the worst flare up of my life last November and was so desperate I tried anything and everything (cough syrup, tylenol arthritis, vicadin, pain killers...) and ended up causing the flare up to go to extremes. My face and throat swelled up and I could hardly breathe, I had really bad edema and all my #s were out of wack. So I went in for a kidney biopsy and found out that I was down to 50% kidney function. I thought my world ended on that day. That's when I found out I had Lupus Nephritis......lupus that attacks the kidneys....basically kidney disease. I was on 14 different meds and found out my best bet was to try chemo to put it in remission. I started in December and had one treatment/month of Cytoxan. My last one was in May and I have been feeling the best I have in 3 years. It's not a great process. I did fine the first 3, then the last 3 I got pretty sick afterwards...my last one put me in the ER. It was usually the few days following the treatment and then it was fine. Anyways, being in the cancer unit to get these treatments was a real eye opener. It made me realize I don't have it so bad. Yeah I felt like crap sometimes and lost some hair, but I'm not nearly as strong as those cancer patients. I'm down to 8 meds now and haven't had a flare up since November. It took them a long time to figure my condition out, but when they finally did they got right down to business. So, as hard as it sounds, stay positive. I just got married on October 11th and give a lot of credit to my husband for being there thru "sickness & health, good times & bad". It helps to have people behind you. I missed alot of work and my friends took time off to nanny for me so the parents wouldn't have to miss work. And none of them took any money, they gave it to me for bills and stuff.
Also, I have tried Plaquenil and at the time I don't remember it working for me, but I was also on lots of other things and we aren't really sure. I had some side effects from different meds, mainly when I was out in the sun alot. My face and arms would get little blisters on them. Out of everything, I hate Prednisone the most. My face/body puffs up so bad. At one point I was taking 60mg/day. I'm proud to say I'm down to 3mg and hoping to be off it completely in 4 weeks!!!!
I was wondering if anyone else has Raynaud's Syndrome? I've had that since 8th grade come to find that it's been a symptom of Lupus this entire time. My hands/feet turn really purple when they are cold. It doesn't take much, just holding a can of pop will do it. I was seeing a Cardiovascular Dr. for that but there's not much that can be done for it at this point in time. Minnesota winters are not fun with this condition :( I hate explaining to people when they ask why my hands are purple. Just wondering if anyone else has experienced this?
Anyways, sorry for the novel, but I thought this would inform you a little better about my condition. Thanks for the replies.
10-25-2008, 06:18 AM
Welcome to the site. My name is Kathy and I have had Lupus for many many years. I am wondering from reading your post about the Plaquenil. How long were you on it? It takes like 5 or 6 months to get the full benefit of this medication. It is one of the top of the line medications for Lupus. I am just wondering is all. I can definitely relate to Prednisone and I dislike this drug immensely. I think that it is a very dangerous drug and can damage the bones and the heart. This is what my doctor told me also and I don't go on Prednisone very often at all and if I have to then I just get put on the lowest dose possible. I hope that you can get off of that drug. Well welcome to the site.
Note From the Moderator-
I moved the comment in this thread from our member "YPT", into
the "Newly Diagnosed" area and made it it's own topic titled
"Lupus Nephritis" by YPT. The reason for this is so YPT's comment
can be more visible, and in turn recieve more comments and
responses than it would have being somewhat hidden in this thread.
10-25-2008, 10:14 AM
Honestly, it was hard for me to keep all the meds straight. Every Dr. visit seemed like there was a new one to try. I was probably on Plaquenil for almost a year and then moved to Methotrexate which was worse for me then the Plaquenil. Once again, it's different for everyone. What didn't work for me might be great for you. I was in lots of pain at the time and needed something that was going to work faster.....although with this disease there is no quick relief it seems. That's why I had to go on such a high dose of Prednisone because that was the only thing that gave relief after a few days. The hardest part is waiting and waiting to see if the drug is working or not. It's hard to be patient and not get frustrated. I hope you're having a great day!
10-25-2008, 08:26 PM
Good Job Rob
10-25-2008, 08:37 PM
Welcome to our family. I, like you, suffer from Raynaud's Syndrome. Mine is extremely painful, especially when my fingertips turn blue. I keep a heating pad in my bed so that I can keep my toes warm at night (in addition to the heating pad, I wear socks, & wrap my feet up in a wool blanket). I think that I can deal with the cold better than I can deal with the pain of Raynaud's.
I'm glad that you joined our family here. You will find the most informative, caring and supportive people on this site. Again....welcome.
Peace and Blessings