View Full Version : I've got it -- Lupus Diffus - Nephritis
09-25-2004, 07:35 AM
I was diagnosed the end of June 04 after only 6 months of a thought of being diagnosed with Carpel tunnel (February 04). Funny thing is when I went to the neurologist I didn't have carpel tunnel. Kidney failure and almost death brought the diagnosis. I didn't have any of the other symptoms of Lupus and am very lucky. Although right now I am on heavy steriods and cytoxan every 3 to 4 weeks. Gone through three treatments so far, hair is falling out, gained weight, my face looks like someone have filled it with helium and I feel pretty ugly right now.
Again, I do feel lucky, I have a great bunch of doctors, my joints don't hurt and my kidneys after the biopsy shows no damage. Never being sick before, it just feels like an inconvience and I am tired of the novelty of being sick. I do wish I could put it all behind me and go forward. I think I am more afraid of the unknown and what will or might happen. Its that lack of control and not being able to see this monster, feel this monster and then get rid of it.
Thanks for listening.
09-28-2004, 12:48 PM
Oh, Christie! Our stories are IDENTICAL (except I'm on Cellcept instead of Cytoxan for now).
I tell my husband now that I am sick and tired of being sick and tired. I think it's my mantra.
Good luck with everything.
10-05-2004, 01:51 PM
Thank you Missy - I have three more treatments to go. Then they tell me I can go on six months of cellcept instead of the standard protocol of more Cytoxan. Yeah. It is great though on the over all, I have learned so very much and continue to participate heavily in my treatments & care. I have also found lots of web sites from diagnosis, to drugs, to treatments, to research. If you need any of them let me know I have bookmarked most of them.
Good luck to you also.
And thanks again, Christie
Hi Christie -
I just wanted to give you some words of encouragement. I went through almost your exact same scenario. I completed the six months of cytoxan treatments 4 months ago. Now I have been on CellCept for 3 months. Yesterday, I got my blood results and everything tested normal!!!
I think you are probably at the worst part of the Cytoxan treatment. I know as my treatments went on, it got harder and harder. Also, losing your hair is incredibly hard. I had the puffy face, too. But just keep in mind that there is a light at the end of the tunnel. It is tough now, but the treatment can work & will be over before you know it.
Good luck! Hang in there!
10-10-2004, 11:21 AM
Thanks, yes it is hard. I have my fourth cytoxan treatment this Friday, Oct 15. Hair is very thin and I'm getting plurisey a lot. It hurts. But I am so anxious to get off the steriods that I tolerate the pain. They did tell me that my blood work is good enough for us to consider Cellcept after the sixth treatment and wont have to have any more cytoxan. That will be great. My daughter graduates from high school this year and it would be nice to have my strength, hair, and to look normal for June. Thank you for being there, I am hanging in there. And it is really good to be alive.
Thanks Cindy for everything. It is good to know you're not alone.
I will be thinking of you on Friday when you have your treatment. I hope it goes as smoothly as possible.
You will look great for your daughter's graduation. My hair actually started to come back shortly after my 5th cytoxan treatment. It grew (& continues to grow) incredibly fast. It sounds like you will be done with the treatments by Christmas, so you will look beautiful & feel great for the graduation!
10-13-2004, 05:32 PM
Cindy - do you still have the puffy face? Are you still on steriods? I really want to get off them but they are telling me that steriods and cytoxan are good together. If you don't have the puffy face anymore how long did it take for your face to be normal again?
I apologize to you Cindy, I haven't asked you much about you. About how you found out you had Lupus? How long you've had it? And how is life treating you now? Do you have any ups and downs? Are you tired?
10-19-2004, 02:24 PM
I'm still on 10 mg Prednisone and Cellcept almost one year later, with fairly good blood work. I still have a bit of "puffy face" but much less than when I was on higher doses of Prednisone. My worst problem right now is fatigue - my hct is down to 27% again. And there is nothing we can do apparently. We're hoping that in December we can try to reduce the Cellcept a bit, and that will help my hematocit, and my fatigue feelings.
10-19-2004, 06:29 PM
Well went to the doctors today hoping he can help with the plurisay. I'm in such a lot of pain. I guess I can be grateful though as it is only on my right side. No help other than taking adavocet. I'm on 12mg of Medrol every other day, predisone didn't seem to level out in my system. They thought it might help with the plurisay but hasn't ah well. The doctors say I tolerate Lupus but it truly is an inconvienence to be sick. This thing (Lupus) you can't see it, touch it, or remove it. Yuck.
But the good news is I will hoping to stop the cytoxan after the 6th treatment and go on Cellcept. Everything I have read about it, shows such promise. I thought it helped with all the blood work including HCT? Mine is 42 it has never been as low as 27. I'll wave my magic wand and say pray and it will come up by next month. <smile> I found a great web site that describes all the blood test on a CBC it is, http://www.ascls.org/labtesting/labcbc.asp Although I didn't read anything about HCT. HMMM
Thanks for you.
10-19-2004, 06:32 PM
This one should work. I hope. I was just there - don't know what was wrong with the other one.
10-24-2004, 12:48 PM
Well, my Nephrologist told me Cellcept can lower many of your lab "numbers", inclluding hct, so I'm hopeful reducing it in another couple months will help my hct, and therefore my fatigue. Other than that, I've been very happy with the Cellcept - few side effects and easy to take, so I hope it works out for you as well. Have you started a remission - do they say? I sure hope so......good luck and thanks for the info.
Sorry it took me so long to get back to you. How are you feeling? Four treatments down, 2 to go, right?!!!
Don't worry about me & my story! I am so happy to be healthy. I am thrilled if I can help someone else feel better!
However, to answer some of your questions. My docs tapered me from an initial dose of 48 mg Medrol per day to 0 by my 5th dose of Cytoxan. My face got VERY puffy while on the Medrol, but I would say it returned to normal almost immediately after discontinuing the Medrol. I hope & pray I never have to take that drug again. It made me look terrible, and then as I tapered the dose down I felt severe depression. I compare it to making a deal with the devil. It may have saved my life, but it was hell to be on it!
Currently, I am only on CellCept, Plaquenil and 1 lowdose blood pressure med. ALL of my tests are normal. I take several daily vitamins and exercise regularly. I think my biggest Lupus trigger is stress. I honestly believe if I can learn to manage stress, I can manage this disease.
How is your hair? After my 5th dose of Cytoxan, my hair started to grow back.
Try to stay optimistic and take care of yourself!
10-26-2004, 04:50 PM
Congrats, CK, on all the "normal" bloodwork! Isn't it funny what we 'Lupies' appreciate?
Yeah, its funny how before I started this "adventure" I never paid any attention to what normal blood pressure was or what my blood work should look like. Now I treasure every day that I feel good and, well, when my test results are normal I feel like its a true gift from God.
If anything good could possibly come from having a chronic disease like Lupus, I would say that I developed a true appreciation for being able to lead a mundane life. I rejoice in being able to walk my dog, take my son to school, or even clean the house. When I realized that the ability to do any of life's simplest things could be taken from me, it was a real awakening. I just can't get upset about petty things anymore. I don't have the time.
Can you relate?