I have been on home hemo now for almost four months. My phosphorous has steadily increased. I never had issues with Phos until dialysis. They have put me on Sevelamer binder, which totally cemented me up, when I took two a day. I mean in pain constipation. I backed off to one a day, when they wanted me to do 3 a day. I do MiraLAX and stool softeners and magnesium 200mg daily. Since I backed off on the binder, the constipation went away. I totally watch what I consume and even got rid of my daily oatmeal. I am sure they will try to tell me to do more dialysis. But as it is, they do not take off any fluid and I still am dehydrated afterwards. I do rehydrate. But now I am worried about the phosphorous.
Question one: How high did your phosphorous get?
Question two: did they put you on a binder and if so, which ones?
Question three: Did a high phosphorus give you muscle spasms and cramps?
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Bassetmommer
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I took the same binder but I also did miralax in my coffee, ate meta mucil fiber thins, and had Senna for those days when nothing else worked (that really did). I took one with everything I ate for about a month then my phos came down from a 6 to a Jan lab of 4.5 and for the past few months it's in the 4.2, 4.3 and the 4.5. I haven't seen Feb's yet. I eat and drink what ever I like with no binders.
I never had any side effects other than gagging on the huge pills every now and again. I'm wondering if some people are just prone to higher phos numbers? I'm also hyperactive due to my Graves Disease so I have a hard time gaining weight.
Thanks for the reply. Horsie I see you lowered your treatment time. Was the phosphorous high because PD wasn't working or was this since you went on hemo?
Unfortunately....when we increase our Protien it naturally increases our Phosphorus.....its a balancing act and from what I am told is PD is not efficient In removing Phosphorus. I am not sure about Hemo Dialysis...How high is your Phosphorus?...High Phosphorus is also hard on our bones and muscles
Strange that Phosphorus increased after starting binder....I would just keep taking it and see how it affects your next couple of months Labs....I also only take 2 binders a day...I only eat twice a day ...I take a bite of my food and then take my binder and let it sit for a bit before finishing my meal...its easier on your gut that way
Meat contains Phosphorus as does most Protien rich foods...especially red meat...I only eat chicken and some pork. I also eat 2 eggs a day, which naturally helps keep stuff moving
Yup, my neph thinks that part of the problem is I went from a very limited animal protein diet to one where I have something everyday. I am going to be more careful about that, but I have to have protein.
Yes...its actually more important...we need Protien to fight off infection...and while Phosphorus Control is very important...I go for the Protien. Just take your binder and do your best.. My protien levels are always on the low side...3.4...and they want me in the 4's...my Phisphorus only runs about 4.6...so they tell me to concentrate on the Protien...Those protien drinks tgey give me work fairly good and they don't have much phosporus...do they offer those to you ?
Hi Bassettmommer,I to have a problem with phos & constipation.Using calcium acetate binder 2-3 with a meal.Was given Constulose 15 ml per day ,it helps but still take a Dulcolax tb on days I don't have dialysis. Phos has been up to 6.7 last month it was down to 4.6.I dont have much of an appetite & only want to eat junk food.Stay thirsty all the time & its hard to make 32 oz last 24 hrs.
Hi Bassetmommer, my husband is on PD and takes binders as well, he is on Sevelamer and another one called Auryxia (this last one because it has iron and his Hemoglobin is under the normal range). Cramps are not related to any of those medications, most likely to being dehydrated. They occur from time to time, but for him is not common at all.
We have been constantly battling the Phosphorus to avoid any kind of calcium deposits in blood vessels and to keep his PTH (parathyroid hormone) in a safe range. These 2 are linked. If one goes out of range, the other one does too.
Since yesterday we are trying a new medication for phosphorus control. It is XPHOZAH, and the beauty of this medication is that this is some kind of phosphorus blocker, so it can help my husband to be more effective with his phosphorus control. One of the secondary effects is that it can cause diarrhea in some cases. We started the intake yesterday, so we will let you know how it goes when he get his labs. Our PD nurse told us that in our clinic there’s another patient taking it and it is working great, so ask your Nephrologist, maybe this can help As this is a new drug, the lab that produces it has a Patient program that can provide it for free and send it directly to your home.
Thanks for the reply. I am going to look at that drug. The cramping I think is related to the iron I inject through treatment. Because it only happens after I do.
I didn't know PTH was linked to phos. My phos has always been in range but since I was in hospital in Aug and Sept my PTH has been low. I was told it was due to my being in a bed for 2 months and to increase walking. I've started doing some every day and it's started to come up but is still low. Of my labs only protein and PTH have been consistently low.
My mom also has to constantly watch her PTH and calcium. Her PA prescribed Cinacalcet (also known as Sensipar) to help lower the amount of PTH, which in turn lowers the calcium and phosphorus concentrations. Her PD also prescribed a dialysate mixture that has a little less calcium and potassium. Since then she has mostly been able to stay in range, so long as she takes both her binder (Auryxia) and the Cinacalcet as prescribed. Has your husband tried anything other than the binders to keep his PTH under control?
Please let us know how everything goes with the XPHOZAH—it sounds like a game changer. Best of luck to you guys!
I find it interesting that you have high phosphorous. Hubby was on both HD and PD. HD usually results in high potassium ( hyperkalemia), PD usually results in high phosphorus (hyperphosphatemia). You seem to be in a reversed situation. Thankfully, there are binders for both. My hubby took Sevelaner to reduce his phosphorous (He despised his "horse pills" - his words.) The two forms of dialysis use different membranes to remove toxins; hence, one doesn't remove potassium well, the other doesn't remove phosphorus well and so forth. Both HD and PD generally also remove protein - more than the natural kidneys would do - so most dialysis patients no longer have protein restrictions. (Our dialysis center demonstrated this by using a screen and running different sized marbles across it representing protein, phosphorus, potassium, etc. so we could see what was/wasn't removed.) Anyway, it takes a little time to see these things reflected in labs. Laxatives, dialysis itself, as well as underlying conditions, etc., can influence phosphorus. I'd have a nice chat with my nephrologist and ask for an explanation and plan going forward. My hubby blamed high phosphorus for his itchy rash and also his restless legs. They impacted his quality of life a lot. It didn't prompt cramps. Cramps happened from the dialysis (notably HD) setting and process itself.
Funny, in a way, my potassium is normal, right in range for the last three months. It was not good, 5.3-5.7 before dialysis. I tried a binder, Valtassa, and hated it. Tasted like sludge from the bottom of the river. Phos was always ok.
My neph and I chatted, and we think part of the problem is I reintroduce animal protein in quantity, where for over 5 years I limited it. My calcium and PTH levels are both in range. The PTH was high and it dropped over 200 on dialysis. My BUN also went up a little, but still in range. So we are going to try to use powder sevelamer and see how that goes. I am also going to be more careful with animal protein. My protein levels are fine.
This whole dialysis program is like that Bop- a-mole game, where you hit on critter on the head and it disappears but then another one pops up somewhere else.
Lol... bop-a-mole is a great description of what goes on! Powdered sevelamer sounds great, it'll probably be a lot easier than choking down a big "horse" pill.
No info on phosphorus, but for the bowel movements, most of the times, more water does it for me. Sounds as if you don't keep much fluid in your system long with the dialysis, Miralax, other meds, and constant voiding. Hoping and wishing you can get some help soon.
My Phos is out of control and I try to remember the Phoslo Binder but unfortunately I often just don't take it or forget. I am trying now to make an effort to take it, but I really don't like it much. They wanted me to take three with every meal but that gave me an upset stomach. Phos is the hardest thing to control for me.
When she first started dialysis, my mom used Sevelamer and had the same issue with severe constipation. Her PA then switched her to Auryxia (1-2 tablets per meal, 3 meals per day), and she has been doing well on it—her phosphorus stays below 5.0 mg/dL. She also uses MiraLAX and Senna Plus during the week to keep things regular, along with a diet that has a good amount of fiber from green vegetables that are low in potassium. She says the Auryxia doesn’t bind her up nearly as much as the Sevelamer did. One thing to keep in mind is that unlike Sevelamer, Auryxia is an iron-based binder, so keep an eye on your iron and ferritin when doing your labs.
Most insurance companies don’t cover Auryxia, but your social worker can fill out paperwork for assistance directly from the manufacturer. Once approved, you could pay little to nothing for your prescription.
Even if my mom watches what she eats, if she doesn’t take the binder, her phosphorus level creeps up. Hopefully switching to another binder will allow you to take it as prescribed without the uncomfortable constipation.
Thanks everyone for your replies. Saw the Nephrologist yesterday. We are going to switch to the powder Sevelamer and see if that works better for me. Sort of peeves me since I had to pay a pretty penny for the pills. I had a treatment yesterday with no Venefor and no cramps at all at night. So it was the iron that was causing the terrible cramps. Now I will have to go for an infusion, which I did before and had no reaction to it. But that was before dialysis.
My phosphorus is good. I eat 3 eggs for breakfast with 1/2 a zuchinni and an organic apple or organic strawberries 1/2 cup. Then lunch I do light tuna 1/3 of can . With 1/2 cup of veg and fruit. Then dinner is always a chicken thigh on a roll with lettuce and dried cranberries and miracle whip with 1-2 cup fruit and vegetable.
I manage my phosphorus without binders. I do 3 egg whites, toast, 1 low sodium turkey backn, microwave sliced zuchinni for 3 minutes and eat an organic apple or 1/2 cup of blue berries for breakfast. You could also do 2 egg whites, 1 low sodium turkey bacon and French toast, etc. Just 2 ideas.
For lunch I add miracle whip (no mayo allowed) to a can of light tuna fish to my taste. Then I divide the bowl in half. Some days I eat it on white bread, other days I put it on lettuce if I notice my stools are slowing down. Then I eat an organic apple or 1/2 cup of berries and 1/2 cup of green beans.
Dinner I do a chicken thigh . I cook a bunch up at a time and wrap each in wax paper and freeze them. I add my fruit, veggie, and sometimes put it on a roll with lots of letttce, dried cranberries and jarred roasted peppers or fresh red peppers.
Yes, the binders blocked me up too and found I was allergic to most of them. I take Calcium Acetate 3 times a day with meals. Seems to be working. I did get the muscle and leg cramps so bad that I bought a bed to elevate my legs when I sleep.
Turns out the cramps were because I was ridiculously dehydrated. They forget to tell me that even though my prescription is not to take ANY fluid off, the machine automatically takes off about 400 ml. So as time went on, and it was doing this 3 times a week, I was a raisin. I did tell them that my weight went down after treatment, but no mention of why. Now I am added 400 ml of saline during my treatment, and I did this on Friday and no cramps over the weekend. I was so dehydrated that even drinking water was not replacing it. GRRR. Oh and guess what else got better since I was not the Saraha dessert? 😜 Fluid is so freaking important.
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As this is a new drug, the lab that produces it has a Patient program that can provide it for free and send it directly to your home. 
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