Anyone taking Veltassa?

[nsemenko]

Hello everyone. I am new to this site. I have FSGS as a secondary effect of a genetic enzyme deficiency and found out about it when I was 23. I am now 37 years old. My potassium levels are up at around 5.3 and my nephrologist is putting me on Veltassa. I have read a lot on it and it seems to have very few if any side effects and those effect only a small portion of the population that takes it. That is according to their literature but I am curious if anyone on here has taken it and what their experience has been. My nephrologist already told me it was like eating dirt (he tried it LOL) but if it does the trick it would be a great thing. So anyone who is taking it or has taken it willing to give me their input? Thank you!

[Hidden]

I'm more curious as to why your doctor compares it to eating dirt. What is his experience with eating dirt and why?

I use drugs.com to check on all medications prescribed for me before taking them. I've included the specific link here for you to find it quickly and you can check the side effects and see if any of those issues give you cause for concern.

drugs.com/search.php?search...

[steve680]

Of course, it depends on your lab and what they consider to be the upper limit of "normal", but I have been told that under 5.5 is nothing to worry about. Perhaps your doctor wants to be pro-active about high potassium high levels. I'm told that a potassium level over 6 needs to be addressed ASAP. My potassium based on last lab reports is at 5.0 (mid June), with 5.1 being the top end of normal. Six weeks before that it was 4.9, so it seems to be creeping up.

I'm getting a comprehensive kidney panel done every 6 weeks to keep tabs on my electrolytes and other important numbers. I'm due for another lab in two weeks. I try to avoid high potassium fruits and vegetables, eating about 50% of what a "normal" person would eat (2200 mg as opposed to 4500 mg). I limit tomato to two slices per day, eat a small amount of potatoes in the morning, and eat no high potassium food (no bananas, no oranges, no avocados, no sweet potatoes, etc.) You should ask your doctor (if you haven't already), if you need to modify your diet and also ask how often you should get your labs done.

So far it's been kind of hard to cut back on the comfort foods that are high in potassium like pizza (tomato sauce is high), potato chips, french fries, beans (green beans are OK), yogurt, etc., but the important thing is to pay attention to what you're eating, know which foods are high in potassium, and to get tested regularly so high potassium levels don't sneak up on you.

I haven't heard of eating dirt to treat high potassium levels, but I have heard that people who are deficient in iron and/or other minerals will get cravings to eat dirt (since dirt contains iron and other minerals).

[lincoln53 NKF Peer Mentor NKF Ambassador]

Hi nsemenko! I have been dealing with high potassium since 2005 when I was getting ready to have a catheter placed in my abdomen for peritoneal dialysis. Everything was ready to go, but my blood work came back with high potassium. Apparently, it is dangerous to perform any kind of procedure when someone has high potassium (maybe something to do with anesthesia but I'm not sure), so they called off the procedure for that day and admitted me to the hospital to treat my hyperkalemia. The medicine they gave me at that time was called kayexalate, and I have never run across a more vile tasting substance in my life. They tried to mask the taste with apple juice, which did not work, and now I have an aversion to apple juice. Kayexalate and Valtessa are both potassium binders, meaning they cause potassium to be bound in the colon rather than circulated in the blood. The excess potassium is then removed through normal excretion. After two days, my potassium had returned to normal levels, and I was able to have my PD catheter placed. Fortunately, I was not required to continue taking kayexalate. I have controlled my potassium levels by avoiding high-potassium foods in my diet such as oranges, tomatoes, guacamole (avocados), potatoes, sweet potatoes, and bananas.

[Hidden in reply to lincoln53]

I can relate to the Kayexalate as back in early 2016 before I knew I had CKD, I had to go to the local ER due to my BP going sky high. They had to give me two little bottles of Kayexalate to get my potassium down as that was the cause of my BP going out of sight. I can second the comment from lincoln53 about the vileness of Kayexalate. In the ER they wouldn't give me anything to mask the taste, but nothing would have helped.

Something I have learned from the Renal Dietitian since I found I have CKD is that potatoes are okay if you leach them first. You peel them, cut them and soak them in water for about an hour or two and then cook them. This doesn't mean I can eat potatoes all the time but one or twice a month makes them doable.

[Tpicard]

Hi could you please tell how the binders went ? Did you have success on them ? Any symptoms ?

[Namill]

I have taken it twice. It's awful. Like drinking sand water. I checked with my doctor if there is any other way to take. She said no - only powder form. I am now trying to put it in pudding. Tonight I try it. Also, others say using an immersion blender helps. You just stirring it does nothing. Good luck. Nan