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Weight dropping. Is this normal?

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Posted 7/16/2012 1:15 PM (GMT 0)
I was diagnosed with stage 3 lupus nephritis a little less than a month ago and was started on 60 mg of prednisone a day, 20 mg lisinopril, and am also taking cytoxin once a month for up to 6 months (I've only had 1 treatment so far). My treatments started on June 28th of this year.

I know that most people gain weight on prednisone, but I've gone from like 160lbs to about 133lbs in about a month and my weight still seems to be decreasing. I've asked my doctors about it and they said that weight fluxuation is normal, but I feel like I keep losing more and more weight everyday and it's starting to scare me.

Also, I keep getting charlie horses in my calves, and my feet and hands spasm and lock up sometimes. I've been trying to maintain my potassium with bananas, but that's about all I can do.

Did anyone else go through this? Is there anything that I can do to relieve some of this stuff and try to keep some weight on? I can feel bones a little more than I'm used to. It's one thing to be thin, but I have so little body fat now that is kind of hurts to have something rub up against me.

I'm just a little scared (but hopeful). Also, is lupus nephritis reversible?

Posted 7/16/2012 3:19 PM (GMT 0)
What is your potassium when you get it checked at the doctors? Is it low? i have found out from experience that charlie horses (all over body) can also result from dehydration, are you drinking enough fluids?

And I would say going from 160 to 133 in a month is probably not good. Can you try seeing a different doctor? maybe your primary doctor to see if they will look into it? I would consider getting your adrenal gland checked

And yes, as long as you treat your stage 3 nephritis agressivly, it can be reversible!!!
Posted 7/16/2012 3:41 PM (GMT 0)
I don't know what my potassium level is, but I'll have it checked. When I started the treatment for my kidneys, I started urinating like mad, pretty much. So all of my weight seems to be going away with fluids too. I try to keep myself as hydrated as possible, but it seems like it never stays with me.

I also feel really, really tired all of a sudden now and seems like I always have slight shortness of breath at night and a constant sore throat. Everything is so new to me and I have no idea what to do. Should I have my lungs checked as well? Maybe all of my organs for saftey's sake?

Also, do you think it would be okay if I emailed you about how to maintain a good diet for my kidneys? I wanted to speak with someone who has experience in eating the right things for renal complication since I was only diagnosed with everything on June 25th. may I email you?

Post Edited (Yoko) : 7/16/2012 10:00:03 AM (GMT-6)

Posted 7/16/2012 6:21 PM (GMT 0)
Yes, you may email me!! Be glad to help. As far as shortness of breath, I would be willing to be you are anemic, which causes shortness of breath. Maybe have your doctor check your iron levels and CBC.
Posted 7/17/2012 2:01 PM (GMT 0)
Hi Amy. My iron levels are indeed low. I was told to take iron and never did (shame on me). Yesterday, I got my prescription, took it and felt so much better. Thanks for that tidbit! Now If I could only stop the leg and hand cramping/spasming from losing all this fluid, that would be nice.

Yes, I'm at stage 3 nephritis, but I have no scares on my kidneys. They only biopsied one kidney though, so is that sufficient? Should I ask to have the other one biopsied, too?


I'll email you about my diet after work and ask some general questions if I can.
Posted 7/17/2012 2:41 PM (GMT 0)
One kidney is sufficient for biopsy.

Also, if you happen to find out low potassiam is causing the cramping, I would suggest a glass of orange juice with a banana every morning and try to eat a baked potato (with the skin) as they all have lots of potassium. Actually you can eat the potato any way...just don't count boiled ones cause boiling takes out a lot of nutrients!!
Posted 7/17/2012 3:42 PM (GMT 0)
That is odd. I have heard of wieght loss on treatment meds like Plaquenil but not Presidone but I guess everyone reacts to meds differently. I would consult a second opinion on the weight loss though for sure like another poster mentioned.
Posted 7/17/2012 4:43 PM (GMT 0)
Well, I'm being treated with Cytoxin IV drips once a month, too. I'm drinking a lot more water now than usual, but it seems like every singal night I have to go the the bathroom every couple of hours. My weight has been going down hill ever since. Is it the Cytoxin? I went from 140 to 133 between July 10 and July 15. I have a desk job so I do retain fluid throughout the day, and ankle/leg swelling was one of my symptoms before I was diagnosed, so I'm just confused. I asked my rheumy about it but she only said that weight fluxtuation was to be expected. It's getting to the point that I'm starting to cramp up now though, and it really sucks.
Posted 7/17/2012 6:49 PM (GMT 0)
Does the cytoxan make you vomit? Are you eating a well balanced meal? I remember while on cytoxan I had a hard time eating in general.
Posted 7/17/2012 7:11 PM (GMT 0)
My appetite is actually intact. I've only had one cytoxan treatment but it did not nauseated me. My first treatment was on June 28th. I was fine for a couple for about a week, then the weight loss started but I really didn't sweat it. Now I feel tired quite often throughout the day, and then there's the frequent urination at night (when most of my weight loss occurs), and then the weight loss is now starting to cause muscle spasms in my legs and feet. I'm having a problem with fatigue, but I guess that's to be expected. I feel a ltitle sick to the stomach today, too.

What kind of meals would you suggest, btw? I ask because my doctors pretty much put me on a renal diet, so...

Post Edited (Yoko) : 7/17/2012 2:46:07 PM (GMT-6)

Posted 7/18/2012 12:48 AM (GMT 0)
when i first started taking prednisone i lost about 15 lbs in a weeks due to water weight but it stopped after like a week and i just maintained.
Posted 7/18/2012 10:37 AM (GMT 0)
https://www.davita.com/register/index.cfm?p=diethelper

if you go to this website, and create a free account, it will give you lots of meal ideas and even plan meals for you. Also has a lot of recipe's one can use. I use it quite frequently :)

Posted 7/18/2012 6:07 PM (GMT 0)
Thanks aimsgirl! I'm still in the midst of composing a rather lengthy email to you (sorry :)...but I'm talkative). I just signed up on Davita, btw.

As far as the weight loss goes, my rheumy told me to watch my water intake. Is that really helpful? The prednisone is also kicking my butt, but I'm hanging in there. I'm curious about CellCept as well, so should I ask my doctor about it? Or is it too early?

Thanks for all the support guys. Seriously, this is making me feel less like and outsider, because no one in my personal life understand what I'm going through. The one person who did was my mother, and her Lupus was pretty much diagnosed too late and then mismanaged by her doctors to top it all off. She passed away in 2005, right before I graduated from college. So again, thank you guys for all the support!

Post Edited (Yoko) : 7/18/2012 12:43:33 PM (GMT-6)

Posted 7/21/2012 2:26 PM (GMT 0)
I am not aware why you would watch your water intake? I would ask him why he says that will help with the weight loss issue. And you need to be honest with your doctor so if you are thinking about a certain medication, ask them about it. You are your own advocate.

To be honest, I am suprised they diagnosed you at stage 3 and didnt start treatment with cellcept, imuran, or cytoxan. I know when I was diagnosed they had me on treatment as soon as they got the biopsy back...which was done 2 days after we found out I was in acute kidney failure. So yes, i would bring up another form of treatment...they can't keep you on prednisone forever!
Posted 7/21/2012 4:10 PM (GMT 0)
What helps me for the leg and other cramps is drinking tonic water. I drink an 8oz glass a day until my body stops cramping. It is a simple way with no added drugs. Anytime you have heath questions, it is great to run them by all of us,: but you need to talk to your doctors and tell them everything that you tell us. Good Luck and hopefully things will stabilize and you will be able to move forward with you life.
Posted 7/23/2012 12:01 AM (GMT 0)
 

    I was diagnosed with Class IV nephritis last year and obviously had lots of the same symptoms. I was in the hospital for a month- 2, 2 consecutive wk stays while this was all taking place and I think it was actually easier. Blood tests every day and they measured all my ins and oh yes...outs! My doctor as well warned me against drinking too much but for the fact that it was overworking my kidneys. I had actually retained an incredible amount of fluid from the prednisone in a short amount of time- about 25lb in 4-5 days which they took off with lasix once I got back in about a day. As far as diet- No SALT! My BP was 217/125 when I was re-admitted. And as well not a lot of protein in the diet. As things have evened out over the year and I've gone from 4 bp meds to 1, and I'm a salt glutton to the core, I do partake once again. As for a desk job, if you have swelling in your ankles and legs I would HIGHLY suggest getting a pair of TEDS stockings- I'd get the ones that come up over your knees if you can (bc my swelling definitely went there). They're compression stockings and I used them for a very long time after the hospital. I know they're $$ to buy in the pharmacy, but I'm not sure if ins helps with them sometimes? They certainly aren't attractive, but they do feel great.

 I started getting charlie horse- like cramps all over my body actually starting last summer, mostly in my arms and hands, legs and feet, and back (not too much else left is there? lol) The cramps would turn my feet inwards, make my fingers stick together where I had to make them go straight and pull them in the right direction myself. It was miserable. And at this point, my blood levels showed nothing to lead my rheum to anything. Enter Flexeril. It helps some, and is better than nothing but that's about it. They petered out over the winter, but they started back this summer- or if I use my muscles too much. And once they start, it's like they don't want to stop.

I wish you luck!

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