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View Full Version : Hello, I'm new from Vallejo CA



PR2001
12-05-2006, 07:45 AM
I was happy to find this website. Not too many people are aware of lupus so I find it hard to talk to others about my condition. I'm glad this is the place I can come to to read and share my experiences as well.

Diagnoised back in 2001 I had the 'flares' (hurting joints, weakness, fatigue, etc) off and on all the way up until 2003 when my condition went into a remission. I was doing much better, working full time and enjoying life. My doctor even began to decrease my prednisone (preddie :lol: ) dosage. Later on in 2004 I got a better job is San Francisco and my home life was even better. I even started going to the gym on a regular basis with some co-workers. I got married and my husband and I began making plans on buying our first home.

Then lo and behold in the mid-summer of 2006, I began to experience the weakness, swelling around the ankles and extreme weight loss (weight loss was actually a good thing :lol: ) so that was when I learned that my kidney's were failing. I was also diagnoised with kidney disease due to the lupus back in the early part of 2002, but back then it wasn't that extreme. I was then referred to a kidney specialist and hospitalized for some testing, one inwhich included a biospy. I loved my job, but the commute was killing me and I was basically no good once I was there. I was tired, weak and feeling lousy. After talking it over with my husband, I resigned and my doctor put me on temporary disablity. My blood cell count continued to drop, I had 2 blood transfusions within a four month period. My doctor is also giving Procrit shots once a week and she's considering having me start kidney dialysis.

So now, I'm at home. Some days I feel good, some days I don't. Oh well, thanks for reading.

Saysusie
12-05-2006, 09:42 AM
Hi PR2001 :lol:
Welcome to our family. I know how it feels to have to give up your job due to this illness. In fact, there are many of us here who have had to do that exact same thing. I also know what it is like to go into remission and start to feel as if all is going to be normal and you start having dreams of living that way for the rest of your life; only to have the rug pulled out from under you. It is frustrating, frightening and you feel a bit lonely sometimes.
However, it sounds as if you have a doctor who is staying on top of things, who is dedicated to keeping your symptoms under control and hopefully, one day, bringing you back to a form of remission. Also, you are very lucky to have a supportive and understanding husband. Having those two things are, truly, the most important factors in managing this disease and being able to reduce (and hopefully eliminate) some of your symptoms.
Finally, you have a family here who wants only to help you in any way that we can; to answer your questions, listen to your concerns, allay some of your fears and let you know that you are not alone!!
I am so happy that you found us and I hope that you join us often.
Peace and Blessings
Saysusie

PR2001
12-05-2006, 10:17 AM
Thank you Saysuisie for your kind words and encouragement.

Sometimes I feel like I'm going to scream. Part of me enjoy the time I have at home, other times I worry about not working, earning money, saving up for retirement, etc. Granted I'm receiving disability income and I figure things could be much worse. I was just so use to having a job and wonder when or if I'll be able to work again.

What I really enjoy is writing and working with PC's. I'm a closet Geek :lol: . I have a few short stories saved here on my harddrive and I really should try and have them publish, just for the heck of it. It's years of work, some unfinished, maybe I should finish them. Since I have all this time.

Missy
12-05-2006, 10:18 AM
Welcome!

My story is a lot like yours - I'm on ProCrit also. I hope you find the support here as helpful as I have.

MARYCAIN
12-05-2006, 10:34 AM
Hi, PR. I also have lupus with nephritis and CNS involvement. I have been on dialysis in the past but do not need it now because my kidney involvement is controlled with diet and medication (IV prednisone and cytoxan). I also have regular blood transfusions because of autoimmune anemia from lupus.

Are you on medication for your lupus? I am wondering because the only medication you mentioned was procrit. If you are on cellcept, does the nephrologist feel it isn't working well enough that you need dialysis also? Has your doctor ever discussed cytoxan with you?

Your doctor has probably explained the importance of diet in kidney disease, but it can get really confusing when you're actually trying to shop or plan a meal. So asking for a referral to a nutrionist or dietician can be very helpful, and it's usually covered by insurance.

There are several people on the forum with varying degrees of kidney involvement, and any of us will be glad to answer any questions we can. So feel free to ask.

PR2001
12-05-2006, 07:18 PM
Hi, PR. I also have lupus with nephritis and CNS involvement. I have been on dialysis in the past but do not need it now because my kidney involvement is controlled with diet and medication (IV prednisone and cytoxan). I also have regular blood transfusions because of autoimmune anemia from lupus.

Are you on medication for your lupus? I am wondering because the only medication you mentioned was procrit. If you are on cellcept, does the nephrologist feel it isn't working well enough that you need dialysis also? Has your doctor ever discussed cytoxan with you?

Your doctor has probably explained the importance of diet in kidney disease, but it can get really confusing when you're actually trying to shop or plan a meal. So asking for a referral to a nutrionist or dietician can be very helpful, and it's usually covered by insurance.

There are several people on the forum with varying degrees of kidney involvement, and any of us will be glad to answer any questions we can. So feel free to ask.

Hi MaryCain. Yes, I'm on other meds as well (cellcept, clonidine, plaqunil, etc.). Back in 2002 when I had Kaiser insurance, my doctor did have me try cytoxan for 3 months when the Cellcept wasn't working well enough, but the cytoxan really did a job on my white blood cell count and as a result I was hospitalized because I was so weak from it.

I mentioned that to my current doctor and she doesn't want to chance that happening again. Thanks for replying with the info about the nutrionist, I'll definitely look into it.

MARYCAIN
12-05-2006, 08:36 PM
I've also had problems with neutropenia from the cytoxan, so my doctor now uses neulasta beforehand, which seems to keep my white cell count up okay. He also uses messna to prevent cystitis from the cytoxan. So the monthly special is neulasta, IV fluids, then IV dexmethasone, messna, IV zofran, cytoxan, then more fluids. It's an expensive combination but it sure beats dialysis.

One tip I learned the hard way, before your doctors give you antibiotics, make sure they don't have any side effects on the kidneys. I've had two major episodes of kidney failure requiring dialysis, both triggered by antibiotics. So I am super careful, not to mention paranoid, about taking antibiotics.

I don't know if neulasta would enable you to take cytoxan, but it might be worth discussing with your doctor if it means avoiding dialysis. The only side effect I've really noticed with the neulasta is an achy, flulike feeling, but it isn't much different from a typical day with lupus.