Hi everyone! Hope someone can help me with this question. My doctor put me on a phosphate binder, sevelimir ( hope I spelled that, right) and after taking it for a few days, it felt like I had swallowed concrete. I felt like my esophagus was going to blow up and my stomach pressure was unbearable. I had to stop taking it. I am stage five kidney disease and my GFR has gone down to five. I start dialysis next week and I am waiting for a kidney. I am on the list. but I have to go ahead and start dialysis. I’ve put it off as long as possible but it looks like that’s where I’m headed. I’m nervous and scared but I am trusting God every step of the way. Can anyone make any suggestions about alternatives regarding phosphate binders. My doctor has recommended another one but I am so scared to take it. Thank you all so very much for any help you can give. *** Has anyone ever tried a low phosphate diet to help control phosphates? Any suggestions. Thank you again!!! God bless.
Phosphate binder trouble: Hi everyone! Hope... - Kidney Disease
Phosphate binder trouble
I've not taken a phosphate binder but have taken a potassium binder with the same side effects. I've found that by watching my potassium intake my levels stay on the good side. I don't know any phosphate diets, but I would go that route first.
Here is a link to Davita food analyzer which will tell you sodium potassium and phosphate values.
Thank you so much!! I am trying to research a low phosphorus diet and will try it. Lord willing it will help. Want to protect my bones but my goodness they keep pouring on all the meds and supplements. It's overwhelming and hard on my system. Take care and thanks again! God bless!!♥️
Once you begin dylasis they will want you to eat more protein.
More protien...WOWOWOW! That is exciting. Thanks for the tip!! God bless!
I understand your concerns. I was put on a potassium binder a while back. It was awful and I stopped it. Sames symptoms as you described. I watched my potassium foods, completely making sure I was not eating high potassium foods. But the level kept creeping up anyways. Turned out to be a prescribed medication for BP was causing the issue. Stopped it and now I am on a roller coaster of trying to find a replacement. That's another story.
As far as phosphorous intake. It is pretty easy to not eat foods with phosphorous. Stay away from any thing that is processed. Dairy creamer, milk, yogurt and some cheeses, are very high. Colas, chocolate, sea food, turkey and chicken can be, and seeds are high. Plant based foods that say they are high are actually not. Oatmeal for example is actually not because we only absorb half of the phosphorous. Google foods and check what you are eating on a regular basis but if it is plant based, we only absorb half.
healthline.com/nutrition/fo...
But the bottom line, and this is where I am also, when our kidneys fail, we cannot really do much to prevent the buildup of phosphorous and even potassium. Our systems just cannot remove it. So even though I am careful, I am seeing an increase in my phosphorous. My nephrologist recommended that I eat a Tums before each meal. We will see if it helps on my next labs.
I am amazed you lasted until 5 before dialysis. You give me such hope. I am getting prepared with a fistula, but I am going to put off dialysis as long as possible. I am at GFR of 13.
Thank you so much for your reply!! It helps to know I am not the only one struggling wit all these pills. I had heard about the binders and kept an open mind but then it was just impossible to take. Do not want to hurt my bones but there has to be a better way. I have a solitary kidney....lost one when I was 36 to cancer and thank the Lord have been fine with the one all these years until I developed diabetes and high bp. It was out of control by the time I went to the doctor and for the past 12years I've tried to manage keeping kidney function normal. Over the years my gfr has slowly gone down. I held in the 30's for 10 years and then to the 20's. At 15 my doctor mentioned dialysis but I still felt good, outside of a few rough days off and on so I have put it off. I dropped to 12-13 last year. I passed testing at Mayo clinic and am on their cadaver wait list. They had me take all vaccinations they require including Covid. That was hard. UGH! I dropped to 6 gfr and went and had the hemo fistula surgery. I am scheduled to start dialysis at Mayo in a few days and am at 5 gfr. Fistula is now 13 weeks old. Yay! A couple of people have stepped up to be a living donor and one is almost done testing. One is a great match and the others I am waiting to hear about. I actually would like to wait longer to hold out to see if anyone is approved with their last part of testing next week... but at this point I will listen to my doctor. Honestly, dialysis scares me..... I've heard good and bad. I cannot give blood as I pass out and get VERY sick after about a pint is taken so I am hesitant. But Lord willing it will be fine and be helpful to my body. The Lord has been with me every step of this journey and I know He is with me still. He has blessed me more than I could ever deserve and His grace is sufficient. As I dropped down to 5 and 6 gfr I really could not tell the difference. I have cut out a lot of protein and tried to exercise regularly to keep my mind in a positive outlook and moving. Resting as needed and focusing on the Lord, family and friends has truly been a blessing. So, as I press onward to hemo or a kidney, please pray for me to be strong and to stand on the rock...with all confidence and grace and keep my mind hopeful and determined. Hope all goes well for you and that your kidney function will hold fast in the months ahead. God bless and thank you so much. ♥️
Sometimes dialysis can help with the phosphorus issue. When my hubby was on hemodialysis, phosphorus wasn't an issue - potassium was the problem Then, when he was on peritoneal dialysis, this reversed. There are several different kinds of binders for either situation to help you out when a diet change isn't enough.
Thank you so much for your reply! It helps so much to see how others have experienced this and similar things. I'm praying dialysis will help and with diet and care be able to not take the binders. Hope you and your husband have a blessed day and again, thank you! God bless!! ♥️
I am. Stage 5 ...on Peritoneal Dialysus and I take Sevelemer Phosphorus Binder...it works great at keeping the Phosphorus. Low...At first ...it made me so "gassy" and miserable I wanted to discontinue it.. but then my PD Nurse told me HOW to take it.....She said to take a couple bites of food....then take the pill....wait a minute or so before finishing your meal...it gives this Med a chance to "explode" and begin working...it really helps me to do this...
If you find Sevelemer intolerable...there are a few others out there...I couldn't take Calcium (Tums) and I think Sevelemer is the only one low in Calcium...
I hope all goes well for you
Me too it really helps my labs and I discovered the few bites accidentally because I kept forgetting to take it to start. It does help with staying regular too.
I am Stage 5 and my gfr just went from 7 to 6. My doctor put me on Sevelemer and felt like I had a volcano inside erupting all the time. I also have Crohn’s disease and have had several intestinal surgeries so my body is far from normal in that way to start. Seems that the foods my digestive system will tolerate also are the ones high in phosphorus. Fortunately I am not a fast food or convenient food eater. I consider myself lucky in that I have been in stage 5 for over 4 years except for fatigue I really feel okay.
It may be your colon then. I have an ileostomy - no colon - and my phosporus binder doesn't have any side effects.
WOW.... thank you SO much for explaining and for such wonderful information. It really helps. Take care!!
I'm on Haemodialysis. Been on it for a year. I will be brutally honest with you, its a rollercoaster ride. My first dialysis session was amazing. Before I went in I felt as if I was balloon full of toxins. I came put of there that day and felt as if my body and soul had been cleansed 🤣🤣..unfortunately I have never had that again. You will grieve for your former life but you will adjust to this new one. Yes dialysis is a pain in the backside but I am still working and have better stamina than some of my younger, healthier colleagues. I also took binders, however I had no issues. I dont even take them now and my phosphate levels are fine. I felt an absolute failure when I went on dialysis but its not the demon, I thought it would be. I have made lots of new friends, who go through the same problems I go through. Make an effort to acquaint yourself with fellow patients. Hope everything works out.
Hi Ziggydoodah....thank you soooo much for sharing. I started dialysis a week ago and the nurse missed my new fistula repatedly. After the 5th jab I had to scream and it went so bad thy sent me home and were worried they would blow the fistula. I sat there and told her the first jab that it hurt but she kept trying to make it go in....AUGHHH! That was a Friday. i went back Saturday morning after icing my arm many times and one of their "best" did my needles. He did great...uncomfortable but no pain. First was 2 hours, next time 2 1?2, 3 and yesterday was 4 hours. I have yet to feel any better but was told it could take a couple of months to feel better. Trying my best with the Lord's help to stay positive and encouraged. Thank you so much for sharing your story and giving me hope. We are praying for a live donor and that also gives me hope. Everyone at the clinic is wonderful and supportive. VERY thankful. Take care and thank you again!!
Yip sounds like my experience after my first initial "high"....they had trouble getting my needles in too. It got so bad my arm resembled a tattoo sleeve 🙄🙄..the bruising was something else. It does get better. I wont lie, you will have a lot more issues. However it does get better, I promise!! Fingers crossed you get a live donor. One of the ladies i was friendly with, got one of her husbands kidneys. She hasn't looked back. He is doing great too. Wishing you all the best and keep us updated 👍
THANK YOU SO MUCH! I truly needed to hear I am not alone in doing this. I know the Lord is always with me but when people care and understand and share it goes a Looooong way. Bless you. Will keep trying to be patient and will look for the positive. Tried to hard to avoid dialysis. Can you share what else I may need to watch out for? I' m so new to all this. Thank sooooo much.
How are you getting on? Just ask if you have any specific questions. The first few weeks are a big learning curve. Hope its going OK though x
I am stage 3 so I am not sure if this will work for you, but I take a regular strength Tums (prescribed by my dietitian) before every meal and sometimes a half of one with a snack that may be suspect. I only eat 2oz of animal protein maybe twice a week, ie., chicken or fish but no beef. Otherwise, I eat nuts, tofu or beans for my protein. All of these are phosphorus.
I can’t really offer a suggestion as I am having the same issue. I never even thought about it being caused by my binder, but that is really them only thing new that could have caused it! Thanks for posting this.
Wow.... I understand. I do not take them now, just couldn't handle it. Taking some tums in it's place and trying hard to wath the phosphorous in foods. and such. Sometimes it hard to tell what is causing the upset but when I started those pills it was just awful. Take care and thank you so much for sharing and for your imput!! God bless!
I use Renvela as a phosphate binder and it makes me gassy as well.it is so hard for me to remember to take mine.id like information on a low phosphate diet as well
Dadvicetv.com has a lot of good information about phosphorus and potassium He has a utube channel for kidney disease a book that he recommends is—Learn the facts about kidney disease by Steven Rosansky who is a nephrologist. James Fabin is the creator of his utube channel he has kidney disease. He has lots of good information
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