Friday, August 22, 2008


So, I haven't posted anything in awhile. My life has been pretty crazy and i've experienced A LOT of change in the past few months. As anyone with Lupus knows, stress is not good for us and for me, change = stress. My relationshiop with the boyfriend that i've mentioned in previous postings ended after six and a half years together. We had also been living together so the break-up entailed a new apartment for me as well. The song, "Breaking Up is Hard to Do" could not be more accurate. I feel somewhat like the world I knew has been forever altered.

I also started a new job at about the same time we were breaking up - more stress for sure, but I really, really love my job - something I have not felt in awhile. I now walk to work each morning and just not having to deal with a morning commute has truly brightened my life and taken away some work-related stress.

Just to add a little bit more stress, I decided to adopt a puppy to help fill the void left by my ex-boyfriend. I've also ALWAYS wanted a dog. She's AMAZING but is a lot of work. I feel like a new mother, constantly without sleep and making sure she doesn't eat nails or chew on electrical cords - but maybe new mothers don't have to deal with the electrical cord thing :)

In health related news - I had a pretty shitty visit with my nephrologist on Monday. None of the eleven toxic medications I'm currently taking each day seem to be effective in halting my nephritis. My protein loss levels are the same as the day I started taking everything. I'm currently taking two high blood pressure medications, 30 mg of prednisone, 2000 mg of Cellcept, a diuretic, and then all of the usual Lupus meds like plaquenil, etc. My nephrologist seemed really discouraged on our last visit - I know because he told me not to be discouraged.

He's tapering down to 10 mg of prednisone and starting me on something called Prograf - another anti-rejection immunosuppresant. I'm taking it in conjunction with the Cellcept and everything else. The side-effects don't sound so great, but I'd be really like to hear about someone else's experience with Prograf. He said that if that doesn't work, our next step is to try Rituxan - again, side-effects sound HORRIBLE. Does anyone have any experience with that?

When I began seeing the nephrologist, he said my chances of having complete kidney failure were one in ten. On my last visit, he said my chances are now down to one in three. I'm really scared and I don't want to take all of this toxic medication, especially if I'm just going to continue to decline in health. I don't know. Has anyone out there had a similar experience with lupus nephritis? I know I can't know the future, but it would be nice to have something to go on in terms of what to expect.

That's all for now.


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Anonymous said...

Hi BG!
Sounds like you're dealing with a triple whammy right now. Ending a long-term relationship, finding another place to live, and a playing a shell game with lupus meds totally sucks and is extremely stressful!! I was diagnosed with lupus in 1992, so I know something about living with lupus, medication, stress, coping etc. Supportive friends and family are out there for most of us, and that's a blessing. I don't know you but I understand the frustration of negotiating through life with a chronic, incurable disease that's always in the shadows. So hang in there and know someone's praying for you (and your kidneys!) and hoping you find the strength to keep moving forward!

Jess Thomson said...

Hang in there, BG - and think positive!

ejhyle said...

I'm going to sign up for my first kidney biopsy this month.....I'm 28, I've had lupus for 12 years now. My blood work looks good but my urinalysis is a mess, I have protein and blood in my urine that does not seam to be going away with 15mg of prednisone, and 2g of Cellcept as well as the plaquenil and the new BP meds. I'm curious to find out how the biopsy was? What were your results from it? How long was recovery? The doctors have gone over this but I would like to hear it from someone who is going through it. I have a hard time talking to anyone, I just feel like they don't get it, so why bother. I think we could help each other with long have the kidneys been causing you problems? How is your creatinine and BUN?

butterfly girl said...

Thanks for all of the kind words! It's been a difficult time for sure, but i'm trying my hardest to stay strong and positive.

In terms of the actual biopsy, it was not a fun experience and I detail it in an earlier post, but it's not as bad as you think it's going to be. I was terrified to have it done - and i'm not usually squeamish about medical stuff - but it was absolutely doable. I think my creatinine is at 1.5, i'm not sure about the BUN but I think my GFR is somewhere around 60 (or 60%?). ejhyl, please keep me posted. It sounds like we have very similar stories - i've had lupus for 11 years and only in the past year has my kidney function become a real issue.

Beth said...

I think that mostly I'm just really angry. I find myself walking down the street glaring at people who are smoking, drinking alcohol, eating obscene amounts of food and their bodies are working just fine! I've been a healthy vegetarian (for 5yrs now) , I exercise everyday, I drink only on special occasions and my body is falling apart! wHat the f%$#@! I don't like discussing my symptoms with friends because I don't want people feeling sorry for me, I don't want the first thing that pops into their head when they think of me is Lupus. I haven't had any problems with my kidneys until recently. Before it has always been painful joints, fatigue, I did experience some pericarditis a couple of years ago. I guess I was hoping that the kidneys would never be an issue and now that it is I'm really ticked off about it.

butterfly girl said...


I can't tell you how much I understand exactly what you're feeling. My disease has progressed in the same way (joint pain, fevers, extreme fatigue, hyper sun sensitivity) - although I've had issues with my lungs and pneumonia prior to the whole kidney thing. But I always felt like - well, at least my kidneys are okay.

For at least three or four years I didn't eat any wheat, dairy, refined sugar, drink alcohol or caffeine and I exercised every day. I felt much better but it was during this time that the kidney issues developed. And I'm angry, very angry. I feel like I did everything right, and this stupid disease still progressed and now it seems like - what's the point? My e-mail address is if you want to email me and talk further. I feel like we could really help each other out. I have the same feelings about talking to my friends and family and not wanting them to feel sorry for me - thus the anonymous blog :)

FibroMom said...

Hi Butterfly,

It sounds like you've been through it. I will be praying for you. I have been searching for a diagnosis for the last two years or so. Joint pain, muscle pain, fatigue, memory loss, etc. My labs last October were fine. My Rheumatologist says fibromyalgia. So I started gagging down lots of produce and walking every day. But my legs hurt so much after I walk. I also experience sharp chest pains on the left side, especially when I lay down at night. I'm suspicious of lupus and wondering if I should ask for more bloodwork. I feel like I'm losing it and I don't want to be a pest. I don't know anyone to talk to about this. Am I losing it? Any thoughts? I'd love to hear from others. Take care.

Beth said...

I sent you an email a couple of weeks ago and haven't recieved a response. Just wondering how everything is going? I'm going in for my kidney biopsy this Friday. My email is Please let me know how you are doing. I think we could be good support for each other too.

GoldenLadyNiecy said...

Hey Sweetie.
I can totally relate to your blog. In many ways your life mirrors mine. I can't tell you that it will be easy or get better but please don't give up. You are not alone.