Edema - how do you deal with the swelling?

Hello,

My edema seems to have gotten worse since I have started the prednisone on 09/08/07. Even though my protein spillage has gone from 4.7grams a day to 3.2 grams a day after 1 month on prednisone and am due for lab results on 11/09 to check my proteins.

I would have thought the swelling would have gone down because I am spilling less protein? Can the prednisone increase the swelling?

I did have to stop going to the gym for a month b/c stopping the other drugs I was on that belived to have caused the MCD threw my health into a tailspin with my colitis and am just now getting better with that. I hope to go to the gym tonite after a month. When I would go to the gym I could get my ankles to almost normal size by laying down after and putting my feet up, they still go down even though I have not been to the gym lately but not as much.

I have ankles the size of grapefruits today and it is not easy to walk like this.

Please share all your edema experiences. I want to get rid of my cankles!!!

Thank you!
Beth

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Hi Beth,
There are a few ways to help relieve the edema.
#1 Eat salt free without mistake. Do not add salt to your food and cook everything from scratch using salt free ingredients. It is a lot of work and food will taste bland for a few days, but the results are worth it. There is enough salt in food naturally to give you any sodium you might need.

#2 Use medicines that relieve swelling. Be sure to complain to you doctor and let him know how much the swelling is bothering you. So call today and leave him/her a message or make an appointment asap. There are also lots of different kinds of meds that will help in this area. Most of them make you feel like a slug.

From my own experience I have a MCD relapse at least 2 times a year. I have tried many different diuretics, ACE inhibitors, and such. For the past year I have been taking one called Inspra that has kept the proteinuria low and I have had no swelling for a year even though I have relapsed multiple times since taking it.

Sam

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#1: My doctor made it seem like salt and protein were off-limits for about the first two weeks, so all I consumed were fruits, vegetables and water. Not only did I see the swelling go down, but I trimmed down as well. I wouldn't recommend being as extreme as that, but it isn't a bad idea to try if all else fails.

#2: Last, but most importantly, any time you spend relaxing, whether it be on the computer, or watching TV, it will help to elevate your feet as high as is comfortable. This will allow for better circulation of fluids, and should help swelling go down.

Let us know how you're doing with this, and I hope all goes well in the future.

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Hi Beth,
My daughter has FSGS. I use an old family remedy. She drinks water with fresh lemon squeezed into it. I use 16 oz of water and one lemon per glass. She flushes the water off quickly and it seems to stay off for a long time. Just becareful if you are warned to limit citrus. She can have all citrus except grapefruit which would not allow her meds to absorb. My grandfather had me do this drink when I was bloated for my wedding. I lost 5 pounds in a few days. He said it pulled the water from my body. When my daughter resembled the michelin tire guy I tried this. She lost 10 pounds of water weight in one week and did not have to go on Lasix. I also watch her diet closely for salt. She is only 8, so some days are harder than others to keep her eating healthy, home made, no preservative(totally loaded with salt), low sodium meals. I will treat her with pizza or a fast food meal only if she promises to drink lemon water throughout the day. After three years and not one day in complete remission on medications, she still is not on Lasix. I control all swelling with diet and lemon water. When she is feeling ill, I make green tea with lemon. I don't know if it really helps her immune system but she definately feels better. Good luck and take care, Renea

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She can have all citrus except grapefruit which would not allow her meds to absorb.

Just a note that grapefruit interaction with drugs usually increases the drug's level in the blood instead of preventing absorption, thus raising the potential for an adverse reaction.

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Thank you all very much, I needed that kick in the pants!! I had been very good about my salt for a month and then completely fell off the wagon this past monday when I had chinese food (yes the worst thing you can have for salt, besides pouring it down your throat). I had even bought a low salt cookbook, made my own salad dressings and I need to go back to following my restrictions. I had actually lost 5 pounds since starting the prednisone b/c I love to eat salt and I did stop eating those salty foods that I love, doc told me no more than 1500mg a day.

I'll call my doc today to see if they can recommend something over the counter or if he can prescribe something for me and will make sure to put my feet up all weekend.

Thanks for all your advice and I do drink lot's of water, normally w/a splash of cranberry juice, but I will try the lemon too. I cannot have grapefruit either, but that's ok = )

Thanks again, I appreciate it. I've had cankles since I was 24 (now 32) and I am just so tired of it.

I hope you all are well.

Thanks,
Beth

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Hi Beth,

If your doctor prescribes you a diuretic, one word of caution, you can experience "rebound edema" when you go off of them. That is what I'm dealing with at the moment. I was on a high dose of Prednisone for my FSGS for 4 months. I didn't have any swelling before Prednisnone, but while on it my ankels and legs blew up like a balloon. So my doctor prescribed me a diuretic called Lasix. When I finally got off the prednisone, I stopped taking the Lasix too assuming that my water retention problems should be over, but they weren't. It was then my doctor told me my body was now dependent on the diuretic, and I can't take them anymore and just wait for the swelling to go away on its own. Well it's been over 2 weeks now and there is no sign of it going away. Now my fingers and arms are swollen too. I must have at least 10 pounds of water in me and it's so uncomforatable.

So just be careful if you get a diuretic that you don't become dependent on them.

Good luck!

Jen

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My husband and I had no experience with edema until May 28, 2007. We went to the mountains and he swelled up like a blow fish everywhere. We visited the local clinic and they found his blood pressure at stroke level. The end of June we put him in the hospital and had our first explaination of nephrotic syndrome. He was passing 9 mg of protein in 24 hours.

We have good days and bad days with the edema. His biggest problem is his private area and abdomen. We are on 160 mg of Lasix and another diuretic. I am going to suggest the water with lemon in it. I hate seeing him in excessive pain and sympathiz with everyone.

I am new to this community and I am looking for answers or words of encouragement. I never knew much about the kidneys until 3-4 months ago.

Any information you can share would be greatly appreciated.

We have found that resting with his legs elivated can releive some of the swelling.

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Renea -
Thank you so much for the suggestion about the lemon and water. I have had swelling for about a month now and it just keeps creeping up. The other two times I've swollen, when I first was diagnosed and then when I had my first relapse, the swelling stayed below my knees. This time it has gone up into my thighs and my knees look like they are about the size of a cantaloupe. I can barely get my pants on and I had to go buy some tennis shoes that are 2 sizes larger and the widest I could find just to be able to have some shoes to wear. The doctor had me on 80 mg of Lasix and everytime I would call saying it was just getting worse, he would tell me to just wait and let the medicine work. It had been almost three weeks and nothing. I read your comments and decided it couldn't hurt anything to try it. I don't know if it is a coincedence and the medicine just kicked in or if the lemon water is really helping, but it seems to have been better the past two days and I was actually down two pounds for the first time in three weeks. I had put on between 15-20 pounds of fluid in the last three weeks. I usually have a little bit of swelling all of the time but can deal with that. I watch my salt intake, do not ever add salt to anything, no deli meats, buy no-salt vegetables, low sodium soups for casseroles etc.; low-protein diet (which I hate); fluid restriction of 64 ounces per day, keeping my feet elevated as much as possible, but still trying to walk and exercise. I am doing a 24-hour urine test today and so I'll know tomorrow if it is going down. This time when I relapsed, and I have no idea what caused it, my protein went from 0.8 to 2.8 to 13 in one month's time.

Anyway, thanks so much for the tip. It really does seem to be helping. I just hope I find out the protein is going down tomorrow. Thanks, Scott

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Scott,
Good luck with your tests. I hope your protein levels are coming down. My daughters levels never go down past 900mg, but for us that is better than before. I hope the lemon water works for you. Kyla is sick of lemon water but knows that it helps, so she drinks it. Have you tried foods without preservatives? The presevatives have a lot of sodium. I shop at Trader Joe's and Vons Pavillions in California. I don't know what they have that would be eqivalent in Texas. If they don't carry the preservative free foods, then I would recommend the old School way of cooking. I call it Little House on the Prairie Days! I buy nothing that is processed. Fresh chicken, fresh veggies, etc. If I make it, it does take forever but she is able to eat and enough the food without horrible side effects of swelling. Good luck and take care, Renea

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Watch the sodium intake and elevate feet/legs whenever possible. I've had edema so bad where the tops of my feet would leak fluid. Ankles were no longer visible. The highest dosage of Prednisone I've ever been on was 180 mg. As a child I took 60 mg of Prednisone and I kept my feet up as much a possible. When you feel your feet tightening then you need to get off of them as soon a possible.

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Beth,

My Nephrologist told me no weight lifting whatsoever. He told me that walking was the best exercise for me to do. I'd like to get some small arm weights to help tone my arms but when you mentioned gym I wanted to tell you not to lift heavy weights.

Sincerely,
~ Gail ~

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Renea- Yes, we don't hardly ever eat anything with preservatives. We have gotten very good at reading labels. I shop at Healthy Heart Market online most of the time. I'm a dill pickle lover, so when I found pickles that had very little sodium I was ecstatic. I have also found chicken and beef bouillion that had no sodium there, which is great because most of the canned broth or other bouillion is extremely high. We very rarely ever eat out either. I have a really hard time feeling like I get enough protein as I am a really big guy and being from Texas of course I was raised eating beef. It's probably all in my head but I just feel very weak on the days I try to do without much meat at all. To drop my meat intake down to 4-6 ounces a day when I could eat 10-12 at one sitting before is quite an adjustment. But, I have been doing it for over a year now. I am just praying that today will give me some good results. I hope your daughter continues to do better, it sounds like you are very diligent in making sure she gets the right things. I know sometimes that makes it hard on the rest of the family and harder on you, so you are to be commended. Scott

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I can't believe how many others are dealing with this. I did get my swelling to go down and have been drinking a lot of cranberry juice which is a natrual diruretic and am going grocery shopping tonite, we do have a Trader Joes (live in New England) and it is wonderful, also I have found frozen veggies in the regular grocery stores which have only 20mg of sodium per serving and cook w/balsamic vinegar, olive oil and garlic and I like to eat those.

thank you everyone and if I do get really bad again, I will call the Doc. I'll be seeing him on Nov 9th for my follow up. My urine is still pretty frothy, so I don't know if I am getting better or not??

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I indulged myself and got a lymphatic massage last weekend. It is very different from a regular massage. The therapist uses their finger tips to lightly tap areas of swelling and all the lymph nodes that tend to get "clogged" when the body is in crisis. It was great on my face since I have swollen so much from the steroids too. People do it after surgeries a lot.

It was a splurge ($60/hr) but my doctor highly recommended it. Some insurances give discounts for "complementary care". I would have rather gotten a good deep massage but afterwards I felt energized and wonderful. Then the next three days I was leaking water and lost 5 pounds in water weight. I was dripping tears and sweating, so strange. Also I urinated a lot too. After a week I still am "leaking" more water. I was amazed. Of course ask your doctor first and you have to find someone trained in lymphatic massage. I asked the local physical therapist.

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Renea -
Your lemon juice home remedy seems to have worked wonders! I have dropped over ten pounds of fluid this week and even though I am still swollen in my calves and feet I can at least bend my knees now and it is so much easier to get around. My protein level had dropped from 13 back down to 3 and my kidney function is still at 100%, so I feel like I have been truly blessed.

My wife and I have had a trip planned for several months. Does anyone have any suggestions for traveling with this? I think I'm more worried about the food than anything else. I guess I'll just have to eat at salad bars and fresh fruit most of the time.

Thanks again for all of the information. Scott

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In looking through an older discussion, I noticed that you mentioned having relapsing MCD. I just graduated to being a frequent relapser with MCD myself (just coming out of my third episode now after being diagnosed less than a year and a half ago).

Could you tell me what you have learned about relapsing MCD? More speciically, what maintenance treatment has been recommended to you? Has your physician discussed the possibiliy that it could be FGS or FSGS? My neph said he is hold out hoping that it is not one of those diseases, but he's let me know that he's quite suspicious, even though two biopsies came out as MCD.

I just started cyclosporine at 4mg/kg for maintenance. While I like my neph, his choice of maintenance treatment really seemed random. He mentioned something called prograft (sp?), then left the consulting room, made a phone call, then came back and said that now he's going to use cyclosporine.

Lastly, when can we get off these maintenance therapies? Do they only work when they're being taken, or is it thought that they can actually have effects that continue long after the medicine has been stopped?

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Hi Iriso,
I have had MCD for 23 years, so it is hard to say exactly where I have learned about it. Plus I have the added bonus of a brother who is a nephrologist. The doctors are sticking to the MCD diagnosis because I am responding to the medicine. I actually haven't had a biopsy for 17 years.

For years I just took prednisone. After about 16 years I was unable to down to a low enough level of prednisone, so cyclosporin was added in. I think cyclosporin is a good second drug to try out. It may take a relapse or 2 to figure out exactly what dose you need. You also have to watch your kidney function because too much cyclosporin can affect that. I believe the prograf you mention is a similar drug to cyclosporin.

Most recently I have again added another drug called Inspra. I think that is the name brand though. This time is one just to control the proteinuria, but it has worked really well for me. Now I have seen the proteinuria go up to a 2 and back down with out changing the prednisone. I have also been able to control more severe relapses with just 20 mg of prednisone as opposed to 60 mg.

Gettiing off the maintenance therapies? I don't know. I was told told the disease would take care of itself in adolesence, but I have come to the realization that I may have it for life.

BTW, I think it is good that your doctor is trying something new. I have talked to too many people who have doctors who are not aggressive enough. If you feel you need a second opinion from another doctor, do it. Your doctor is a proffesional and won't mind. He may even welcome other opinions.

I found a good overview of the medicines available here:
http://www.emedicine.com/ped/topic1564.htm

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Thank you for that information. Have you been on continuous therapy for many years or have you had periods without any meds? I'm just trying to get a sense of what I might be in for over the long haul with these immunosuppressants.

-Larry

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Wow I am so glad I read everyones responses to your question. I am only 3 weeks and 3 days into my Heart Transplant.... They had me on IV Lasix. I've been stuck in the hospital getting evaluated and waiting for a heart since December 18th. My regular Cardiologists are on vacation right now. Another doctor is here for the time being .....he's way older and apparently knows what he's talking about. I went into surgery at 143 lbs. and I'm 5'6" ...I came out at about 164. They had to stick me on dialysis to help my kidneys. Now I'm not in Intensive Care and I can walk and stuff.....they were giving me lasix they took it away for a day and i shot up to more than what i was before! I'm like 177 lbs! It's killing me....all the fluid and the swelling. My inner thighs are full of fluids and so is my you know what.....I walk like a frickin penguin. My stomach is so huge.....especially the left side....pajama pants barely fit....my right hip is bigger than the left. I'm all lopp-sided....as my mom would call it. I'm trying my best to stay away from the sugars. I am taking insulin daily....watching my carb intake. They are also tapering my prednisone right now. Today it is 20mg in the morning which I already took because it's almost 6 am and I couldn't sleep, and tonight it's 15. Man, I LOVE lemons and lemon water.....why didn't I think of that before?!?? lol. What about lemon water with a pack or two of Equal?? Thoughts? Anyone? I mainly get milk and orange juice for breakfast. I'm getting plenty of protein. The hospital I'm at gives these things called burn shakes...they are ice cream, milk, and protein powder. I had to get all my teeth pulled so they are great. Thankfully, on the low salt cardiac diet.....the meats are mostly soft....and I can eat them now ....got my teeth pulled middle of January, so my gums are healed already. grr meds are making me ramble on and on. It's 6:00 am ...I can't sleep, too much on my mind. They wanna release me tomorrow to stay 3 weeks in these apartments across the street ...so I'll be here for the next two biopsies. I am from a different city. I was also wanting a massage when I get out...so I think I'll check out the lymphatic one.....talk to to doctors about it also.

~*Sarah*~

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You guys are life savers! I just go back from a 10 day cruise on the Panama Canal. I have CKD and have never exerienced swelling. My ankles were swollen for days along with very sore ankles and knees. Guess what I had every morning "grapefruit". I am home noe and plan on stocking up on lemons. Great site! Thanks!

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