Hi, I also have lupus nephritis (since '95) and I am also a post transplant patient. I got pregnant in '09 and now have a little girl. I had to adjust some of my meds. you can be on Aziathioprine...
Hi sorry to hear your having such a rough time with the sun. With me, I can spend a little time in the sun before I get all tired and just worn out. Does indirect sunlight bother your lupus too?...
I was put on Cellcept in '06 after my kidney transplant. I did have a lupus flare in '07, but I was and still am on prednisone (5mg/day). In '08 I changed to Imuran becuase my hubby and I decided we...
I have AVN in my hips, knees and ankles. I've had a AVN in my knees since 1999 and the docs just did arthroscopic surgery to remove the dead bone and debris from my knees. I was diagnosed with AVN in...
Hi Tonya, I had a kidney transplant in '06 and my dad was my donor. Everything's going good with me, my dad too. Funny but I think he was in more pain than I was after the surgery. I actually had a...
I have it, it started in my knees and now I have it in my hips and right ankle. Very painful, and yes they attribute it to the prednisone. Mine gets worse every time I have a flare. It's gotten very...
Hi, I was diagnosed with lupus nephritis when I was 13 and I am now 27. What kinds of meds is she on for lupus? A creatine of 1.2 is very good by "our" standards. normal is around 0.6 and she still...
Hi Jessie, I was diagnosed with lupus when I was 13 (I am now 26). When I was first hospitalized for it, I shared a room with a little girl that had it also (we had the same doc) and she was around 5...
My problem with sunscreen is that I hate putting it on, and I hate the greasy feeling that it leaves. But recently I found the both Lubriderm and Aveeno both created regular lotions with suncreen. I...
Oh Lori, that's so wonderful, now they have one of each. And you are Grandma!!!! I am very happy for you. I take it the new kidney is working very well then. The baby has a beautiful name. Congrats...
Oh Lori, I am sooo happy for you guys. I hope that everything goes very well and that they both get through this without any complications. Please Please let me know what it is when you find out! So...
Yes, Lori is right about the insurance thing, as soon as you start dialysis or have the transplant, medicare will call you and set up a phone interview to review your case it may take a month or two...
Thanks Lori, where have you been hiding yourself? I havent seen you post in a while, how are you doing? How is your son? Hope you are both doing well, and I hope that the meds are working for you....
Hi, I was diagnosed with lupus nephritis when I was 13 yrs old, and i never had a rheumy. I only saw a pediatric nephrologist and sometimes other specialty docs if needed. With lupus nephritis they...
Oh girl, I am sooo sorry to hear that. But please DO NOT stress yourself out you know that only makes lupus worse. I will say extra prayers for you and baby until you are out of the woods. Just think...
My situation was a bit different then most, I think. When I had my transplant I wasnt in complete renal failure, my kidneys were getting worse but they were still filtering so I didn't need dialysis,...
Tell me about it, and then its hard to even execise because I am forever tired and in pain from the avascular necrosis in my hips, knees, and ankles. But at this point I want to not only lose weight...
So I was at the bookstore with my hubby and I found a book about a "Thyroid Diet". I have only read a little so far but since I do have hypothyroidism, I think that it may work for me. Most diets...
Hi, i had a kidney transplant in '06 and during the whole pre-screening the transplant docs I was seeing had to check to make sure that my lupus was not active because I am pretty sure that they will...
Thanks for the support everyone, I cannot tell you how much both the creatinine levels and the possibilty of having a baby have extremely elevated my mood. I have not felt this optimist in so long I...
i have two pill organizers but they are basically the same. I take about 20 pills a day, and my organizer is for 7 days with 4 compartments, and they attach to a back but are removable, so everyday i...
Hi everyone, Hope everyone is doing good. Well I have some good news. I saw my transplant nephrologist on Tuesday and my creatinine is down to 1.0 again (when I saw my local nephrologist in March it...
Yea, this sounds like alot of fun. I live about 2 hours from Atlanta, Babs, can you send me the info? My email address is on my profile...
Hi, I really sorry to hear about your wife, its hard enough to deal with lupus and then we have to deal with not being able to continue to be our "old selves". When I applied for my job in Jan. I...
I live 2 hours from atlanta, and i have a couple of docs at Emory too, so when i have appointments there, i either take my hubby with me or i spend the night at a hotel the night before so that i...
thanks Stacie, Actually when i made the appointment, the nurse or whoever i made my appointment with told me the same thing, and i told her not to worry cuz i always bring a book to doc appointments....
Hi everyone, Ok so my question is has anybody used that new thing they are advertising about the toxin removal foot pads that you use at night? And my update is I got an appointment with Dr. Kimberly...
medicare would become your primary and your exsisting insurance would become your secondary. But talk to your exsisting insurance and ask them how they will work as a secondary. Some secondaries will...
thanks for the great info, guys, i live in Columbus, Ga because my hubby is stationed at Ft. Benning right now and i really want to find a doctor that can give me some more definate answers about...
Before i had my transplant in '06 I had problems with my blood counts mostly red blood cells. My were always low, the docs had me on procrit, which you inject subq into your arms, legs, or stomach,...
I have been taking cellcept now for almost two years, and so far nothing much with side effects just some diarrhea and thinning hair, I had a flare in march '07 but they had lowered my cellcept dose...
My docs actually told me that water exercises would be a good way for me to exercise. I have problems with my hips, knees, and ankles, (thank you AVN) so as you can imagine walk is difficult let...
Congrats Judy, I am definately gonna get my copy when it comes out....
Congratulations, Tink that's wonderful!...
I took it twice. IV form in '98 when they tried to stop my kidneys from going into failure (didnt work) and in '03 oral treatment that i could not finish because my white blood cell count kept going...
Hi Renee, I am soo sorry about your situation. It's always awful when someone is constantly telling you are not sick and that it is all in your head. Those are the people we generally stay away from....
yes, some drug companies are willing to give rebates to patients to help cut their cost for the meds and some pharmacys are doing the $4 dollar perscriptions....
same here, i've had like 7 in the last 13 yrs, both asleep and awake, and neither hurt and i was fine afterward. I just had to lay still for a few hours and then i got to go home the same day each...
Yes thanks very much tink, i signed the petition and then copied the link and sent an email out to all the people on my friends' list....
also when you are looking for signs, water retention is a good indication but not just in the ankles, hands and eyes although those are really good indicators, i have lupus nephritis, and when you...
yea, my mom is already doing the medical part for her and i already started the research both legal and medical the hormone treatments i will talk to my docs about when i see them. And my hubby is...
oh dont worry, even if we did decide to do this, it would be many months before anything would actually happen. We still need to talk to doctors, do research, and I really dont want the finanical...
Hi everyone, Ok so I went to my local nephrologist on Tuesday ( I don't see my Transplant Nephrologist until April), and when I asked her opinion (again) on getting pregnant this time she said that...
yes, always good to know....
Judy, that is absolutely wonderful! I am sooo happy for you. Keep doing what you are doing! Congrats!...
i have itching problems too, especially after showers and after i wake up, what i did found that helps is gold bond lotion, it works very well but i think mine has more to do with dry skin but i am...
hi Python, I've been on Prednisone going on 13 yrs in May, as high as 80mg to as low as 5mg every other day. My new maintance dose is 5 mg everyday, after my kidney transplant the docs said that i...
i feel the same way Judy, between my nephrologist who also concentrates on lupus, and my PCP who also concentrates on lupus, i'm in very hands. they are both happy to follow my lupus as long as the...
ok i see, i dont see a rheumy because when i choose a nephrologist i always get one that also deals with lupus so that i dont have two see docs, and so far i have been lucky because my nephrologists...
thanks redrose, i was hope that you especially would answer this post, not that i dont absolutely appreciate whole heartedly the advice from everyone else, i never thought about a genetics expert,...