does salt make you worse?

• By smhong86
• Posted May 3, 2008 at 2:23 am

i guess it seems to be that way...although i can't really say for sure..
even though i was so careful about sodium intake last year, it relapsed regardless.
i think for me, food and stress have a lot to do with relapse/remission.
i was going through some tough time last year and i was stressed out emotionally and physically.
i believe it relapsed because of it regardless of my food intake. (the relapse after 9 months of remission)
hopefully, the last relapse was the last relapse for mine...though I think i have 50/50 chance of relapse...sigh...

anyway, it's really hard to control that kind of abstinent lifestyle...unless you're living in a cave or something.

I think MCD is something that is really hard to say anything for sure especially with remission and relapse relationship.

I had Thai food and pita chips today and i feel a little bit swollen..and I'm currently in remission. I still swell in the legs and I don't know why. (Even when not eating salty food)
I think I just have to live with this for the rest of my life...or at least for a long, long time..

Sometimes the proteinuria stops by itself..so don't be so stressed out b/c it will only make it worse..
I get 1+ one time then goes back down to neg or trace the very next day or even within several hours..
I just hate that this disease is so vague and obscure..
can't know anything for sure..

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• By Drkevorkian
• Posted May 3, 2008 at 6:41 am

i´ve 30 years of NS and I always used salt in my diet. Never had any problems

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• By mom23boys
• Posted May 3, 2008 at 7:11 am

I went to see my nephrologist on Wednesday and I am in remission. For a week before I was very bad with salt intake as I have to say the prednisone kicked in and I was so hungry. I simply could not keep up cooking fresh food as much as I needed to eat. I gaioned 6 pounds back in a week and thought for sure the bubbles in my urine meant I was still spilling protein but I am not.
My Doctor said to stay on all meds for 2 weeks and another urine if still clear I will begin tapering down from 80 mg. He said he sees relapse in women my age(Geez I guess middleage #*!)often so wants to be cautious.
I was told by three nephrologists that salt might make me hold water but can not worsen my MCD .
Interesting enough the doctor I see now was adamant that NO one should be left on Prednisone without acheiving remission for longer than 16 weeks. It will not work if it doesn't by then. Luckily I responded in 6 weeks.
My legs are thin now because I am on lasix and aldactone and cozaar. I usually get some sweklling at night after a long day and I hear that swelling after MCD in ankles is common as the body has "Memory" and some residual swelling should be expected. Good Luck

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• By smhong86
• Posted May 3, 2008 at 10:25 pm

hi mom23boys,
Do you know if that residual swelling will ever go away?
I've been off of predisone for about two months and i still swell whenver sitting for a long time or long day at work.

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• By mamagemini
• Posted May 4, 2008 at 12:12 am

Wow. Do all of you just have MCD?

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• By mom23boys
• Posted May 4, 2008 at 4:02 pm

I can say that since I discovered MY Brand New Eating Disorder (I am now a binge eater that hides it from my husband) I have gained 10 pounds. I guess the prednisone has kicked in and I am eating way too much salt. I have the double chin but no swelling as I am still on lasix 40 mg twice a day, aldactone 100mg twice a day and cozaar. I am in remission and hope I am not sabotaging myself. I simply can not keep up the fresh stuff cooking with the three kids. When I wasn't hungry like a raving lunatic I could. I know that I can lose the weight, I am more concerned that I need to hide this from my husband. I am hiding sour straw candies in the house and since Friday I ate two jars of Garlic sour pickles which have a lot of salt but are low in calorie and I am ctraving salt. I have promised myself that tomorrow I will not eat bad. I have cut up veggies and defrosted chicken. I am afraid I am going to throw my body off again. It is a shame how quickly I have taken for granted my health. I should remember that I was in the hospital twice since March but I almost feel out of control. I can deal with the weight gain later I am mad at myself for making the wrong choices despite knowing better. It must be the prednisone as I have never felt so out of control. I do not know if salt makes you worse. I would say that for 6 days before I found out I wasn't spilling protein I started eating more and more and then added Cooked chickens from the store(probably high sodium) to my diet as I was starving and working etc. and I still had no protein. My albumin was less than 1 when I went in the hospital the last time (spilling 34 grams) and shortly before my urine test it jumped to 4.1. I do not think eating salt hurts us with the MCD but makes us hold water for sure.

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• By johnh
• Posted May 4, 2008 at 7:26 pm

Beth:

If you are swelling from salt intake I think you are spilling more than 2.5 or in the nephrotic range. I have been told once you are consistently below that range you begin to go back toward homeostasis and as protein builds up in your blood, which is slowly, because the liver can only make so much that you can have salt even on prednisone still. The advice about staying away from salty foods is that they make you compulsive for more, its why junk food is considered addictive by foodies.

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• By mamagemini
• Posted May 5, 2008 at 1:21 am

mom23boys - the prednisone is what is making you do the craving and feeling out of control.
Pred also can accelerate any underlying mental issue. Like I have ADD...which gets way out when I take the Prednisone. If you are anorexic or bulimic it will be exacerbated by the Pred.
Do you have high blood pressure? If so then the high salt is going to hurt you in the long run.
2 jars of pickles?!?! Sheesh that would put me in the hospital! Please be careful.
Stay in touch!

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• By Beth75
• Posted May 5, 2008 at 9:56 am

Thank you everyone for your responses!

I was really stressed out the past couple of weeks so you are right that probably has something to do w/it.

John that totally makes sense I was around 2.5 last test.

I am going on vaca next week and hope I don't swell up like a balloon from eating the food at the resort......but I guess I should not complain and just be happy that I can go on vaca. Maybe I will be so stress free it will help my MCD go into remission?

Wishing you all remission!

Thanks,
Beth

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• By Jenny1
• Posted May 8, 2008 at 9:52 pm

Well, I don't know if salt affects those with MCD differently then those with FSGS, but all I can say is that I've been dealing with FSGS for 22 years, have had protein spillage below 2 for 21 of those years (usually it's actually less then 1) and salt affects my swelling big time. The more salt I eat, the more I swell. Now, I can't say that the swelling is as bad as it was when I was in NS, but it does get pretty bad - especially when travelling. So, John, while what you say makes perfect sense - some people are just a little more sensitive to salt then others. But then again, I have FSGS, not MCD, so maybe that could make a difference? I wish so much that it could be true for me.

But enough of that - where are you going on vaca Beth? Hope you have a great time!

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• By Boussaar
• Posted May 8, 2008 at 10:04 pm

I try to keep my diet as salt free as possible. I can eat a little more now but I am on a very strict diet as to potassium and phosphorus. No milk or milk products,
no coffee even decaf and limited amout of fruits and veggie with potassium. Also taking Phoslo before each meal and calcitroil which protects the bones against prednisone. My neph says I will be on a 5mg maintenance dose of prednisone as long as I live but I am not swelling and am not taking any lasix now. Have not have any swelling since October and then very little. My neph does urine and blood work every three months and for the past 6 months my kidneys have been 100%. I have FSGS and was diagnosed in 6/07. I had a lot of pain in my lower back & hips when I left the hospital in July 07 but I think it was from the large doses of prednisone because the pain has gone away and I do not have joint pain. I am 59 and am back riding my racking horse and work full time without any trouble. I think the diet and low sodium are key.

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• By mom23boys
• Posted May 9, 2008 at 6:24 am

I am trying very hard to contrrol my urges. Doing well. I do not have high blood pressure and am on a B/P med currently to help the kidneys.
I remain on 40 mg twice a day lasix and aldactone and so am not swelling. The prednisone has made me crazy but I am ivercoming it! Good Luck to everyone with CKD. It is frightening to say the least

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• By Beth75
• Posted May 9, 2008 at 10:12 am

going to the Domincan Republic, will be on a plane in 21 hours = ) woo Hoo.

Saw Nephrologist on Wed and he told me to buy compression stockings (I am wearing them now) for the plane ride so I dont get a blood clot......lovely!

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• By Jenny1
• Posted May 9, 2008 at 6:48 pm

I can say from experience that those highly ugly, uncomfortable stockings (not to mention what a pain it is to put them on - mine are thigh high) are so much better to deal with over a blood clot. I have had two and they are no fun! Try to get up and do a little walking every couple of hours if you can - that will help too. And have fun! I still have another month until my vaca and I'm jealous!

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• By polaris
• Posted August 15, 2008 at 11:45 pm

Hi Beth75 , yes salt does make it worse in several ways try and maintain a low sodium intake as possible
and I believe you will do much better.

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• By Aweson-son
• Posted August 17, 2008 at 10:49 pm

I can tell a big difference when I eat salt. Just yesterday I ate too much, and woke up this morning swollen. When I watch my salt I am a lot lighter. I can just tell the difference on the scale. It is so hard to control those salt cravings. I just try to go take a nap and get my mind away from food!

Allison

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