Hi Hara! I'm Amy's friend that was on dialysis and now doing great! Your friend is blessed to have someone who cares enough to make an effort to understand! God Bless you! Dialysis is tough and it...
Thank you guys so much!!! I really appreciate it!! God Bless you, Judy...
If you do can you please e-mail me! I have a question about it. My subscription expired. Thanx, Judy...
Just wanted to add my welcome. So sorry you are having so much discomfort. I hope you get some answers soon. Judy...
I just wanted to say cellcept has help several people. I did end up on massive prednisone for mine but it was really severe brain inflammation. Be careful it can get out of hand quickly. God bless...
I also have ana negative lupus with multi-organ involvement. Mine was diagnosed by a renal biopsy. I did have postive rheumatoid factor, elevated sed rate and c-reactive protein and the clotting...
Hi! Unfortunately, I haven't dealt with the issues you named either. Along with Okie, I just wanted to say hang in there and keep checking back. There are plenty of people who will be able to offer...
Hey! Have you been diagnosed with Lupus nephritis by biopsy? I have it. Your creatinine is def. not "out of the ball park" at all. Are you seeing a nephrologist? Sorry so many questions. I wouldn't...
I would love to have a "get together". Y'all pray I can get my little bug fixed and i'll come!! Judy...
Hey! I agree with Carol and Amy. I also have renal involvement with Lupus. I am no doc, but it sounds like bladder more than kidney to me! It warrants a check up for sure. Let us know how you are!!...
Carol, I'm thankful you have nurses coming to check on you! Get lots of rest and take good care of yourself. Love and prayers, Judy...
I just wanted to "Amen" those two replies! I've done the same thing as Ginny...feast or famine and wind up in serious flareville!! Be careful!...
Barb, Sweetie, my thoughts and prayers are with you! Hang in there!! We love you!!! Judy...
Thank you Pat for keeping us updated and for caring for Carol! Please tell her to hang in there. I know she is exhausted. My thoughts and prayers are with her! Judy...
Hi Louise! Welcome to the forum. I'm so sorry you are dealing with these issues, that we are all so familiar with! Is the specialist a rheumatologist? If not, you really need to see one. If so, you...
Carol, So many of us depend on your sweet, compassionate posts and your wonderful sense of humor to pull us through the rough spots. We love you and are pulling for you! I know you're tired sweetie,...
Hey I wanted to suggest that you contact the company that manufactures Cellcept. I just remember one time when I had just quit working and hadn't yet gotten my disability my doc got the med donated...
I really am so sorry that you had such an awful day!! I've sure had days just like that! Please don't beat yourself up for doing what it takes to get some relief and rest. I pray tomorrow is a much...
Hi! I also have Lupus nephritis. My case is similar to Amy. I have never had any pain associated with the kidney failure. I also had the biopsy to confirm the diagnosis. I know you must be incredibly...
Hello! Crazy insurance!!! Arrrggghhh!!! Cellcept is outrageous without insurance! I took imuran for years. I did have some problems with anemia. I'm sure you'll be getting blood work on a regular...
Hi and welcome to the forum. I'm really sorry you are dealing with so many issues. Getting referrals to see the specialists is a great start...good for you for advocating for yourself! Make sure you...
(((Carol))))) My thoughts and prayers are with you, my friend! Hang in there! Love ya, Judy **If anyone hears how Carol is doing please let us know***...
HI! I have had Lupus for 10+ years and i'm still not dealing well with the fatigue. If it's just "pure" lupus fatigue and not related to a secondary problem...i'm not sure there is a way to "fix" it....
Carol, HA! You always make me laugh out loud!!! Love your sense of humor!! I did get your letter, thank you sooo much! I'm like a little kid. I love gettin' mail! :0) BTW- Be careful what you ask...
Hi! I just wanted to say, I am so sorry you are dealing with a sick child. I'm not familiar with this disease either. Thankfully, you are on the right track and getting him in to all the right docs....
Okie!! Oh wow! I hope and pray y'all don't lose power! That's a bummer! We're about to get drowned here in the Gulf South! I'll be thinking about you!! bless ya, Judy...
I'm thinkin' this warrants a call to your doc. Have you had any labs done lately? Even though it wasn't accompanied by pain I really think you should let your doc know. It may be that some of your...
Bekkah, Hey girl! I'm sorry you are facing this horrible disease. I have lupus nephritis too. Trust me, things can get better, just hang on!! I was in end stage kidney disease, on dialysis and...
Stacie, I'm sorry you aren't feeling well. Let us know what the doc says! Judy...
Just wanted to say welcome to the forum. I hope you get some definitive answers soon. Judy...
Amy is so right about the GFR. My doc was ready to put me on dialysis a good while before I needed it because the lab was miscalculating my gfr. I figured out that they had never weighed me, which is...
Please know that I will be lifting you up to Jesus in prayers. He understands when nobody else does! I'm with Fran. Things can surely go from really bad to really good real quick! I'm living proof!...
Welcome to the forum. I am so sorry to hear that you aunt is so sick. I really think you did the smart thing by making an appointment to see a nephrologist. I'm not a doctor, but have CKD myself. I...
Just wanted to add my welcome. I hate that you had a need to be here, but as Fran said there are some wonderful people who can offer some advice and a soft place to land! You prolly want to call asap...
Sweetie, if you are feeling that bad it wouldn't hurt a thing to go back to the er! I'm sorry you are feeling so bad!! Let us know what you decide. Judy...
Redrose, I wouldn't panic either. I have bruises from Jan. '09 that aren't healed. My doc says chronic prednisone use is the culprit! Hang in there! Judy...
When I was on peritoneal dialysis they wanted us to have 100gms of protein daily! It was next to impossible!...
Girl! I know your frustration. Nobody really wants a lupus diagnosis, however, it is so frustrating to be on all these meds and have all these problems and not know what you're up against. When I...
Rose, There are several options for treating kidney involvement beyond prednisone and imuran. Try to worry. I know it's hard! Thinkin of you and prayin for you!! Judy...
Good for you rose...enjoy! Judy...
Girl...i'm so sorry you are so sick! Take care!!! Drink lots of fluids!! Judy...
I wish I could show you guys what my face looked like after 6 weeks on 120mg daily of pred. It was huge and my eyes were nearly invisible...I am not exagerating at all. I stayed at that dose for a...
Rose, How are you doing?...
Uuggghhh! Not good! Girl, you better put those feet up this weekend and rest as much as possible! Take care of yourself! Judy...
I'm praying it gets better! Hang in there! Judy...
Please let us know what the immunologist comes up with! Good luck! Judy...
(((((((Barbara)))))))) You do not fuss too much...that's my full time job!!! :0) I'm sorry you aren't feeling well. Let us know what the docs say. I'm praying they find a way to help you!!! God Bless...
ArticKat, Bless your heart! I know how clinicals are...been there done that! Is the redness and pain on both sides? Have you done this before? I would suggest you put a quick call in to your rheumy....
The olive oil thing works. I've made olive oil soap before and it was awesome! Judy...
Lynnwood, Just as a precautionary, i'm wondering if you should mention this to your doc. I took fish oil for a short while and had to be taken off because I started having nose bleeds. It can have a...