Dieticians... your job invloves more than just parroting, "take your binders, are you taking your binders, ad nauseum." A fatal problem (re:NEJM article) is cardio-pulmonary calcification from elevated cal-phos product. Easy culprit, calcium acetate binders. I know. My product went to 99, and nobody showed concern. Thanks to this VORTEX site, I changed to RENAGEL, and in two weeks my product went to 56. Not a miracle, just chemistry. LOOK INTO IT.

With all of the messages you are sending out, I would assume the renagel people are paying you to say these things. You must have been a non-complient patient on your earlier phosphate binder, with regard to pill consumption - either that or you have radically changed your diet. Renagel doesn't work nearly as well as other binders out there. You must be an isolated success story.

Before you jump to conclusions, do your homework. You sound like an ill-informed dietician. I change to renagel for one life and death reason - coronary artery calcification from excessive calcium/ cal phos product - from taking thirty Phoslo a day. See May 18th New England Journal of Medicine. I take as much Renagel, actually a bit less - twenty four a day. Indeed my ca/phos product is down (fluctuating 65 -55).
Anyone who is not aware of the value of Renagel needs only to do their own research. Any professional who is not already aware is either ignorant or noncompliant. Or maybe they work for Phoslo. Re: your attitude.

You must have medical coverage in order to be taking Renagel, because of the cost, and that is great that it is working for YOU. I am sorry for your condition - It is very difficult being an ESRD patient. Unfortunately, it shouldn't warrant the attitude you currently have. I have done my homework and read all of the articles. I have seen the Genzyme (Renagel manufacturer) representative in my clinic. In fact, I am looking at an article right now from Nephrology Dialysis Transplantation 1998 "Effect of Renagel, a non-absorbed, calcium and aluminium-free..." by Dennis Goldberg et al. In this clinical, it clearly shows not one patient having a cal/phos product below 60. The fact that you have a product of 56 is completely unheard of, at least according to the Renagel clinical. Since you keep bringing up PhosLo, as will use this as an example for comparison - The PhosLo clinical I am looking at right now from the American Journal of Kidney Diseases May 1991 "Calcium Acetate Control of Serum Phorphorus in Hemodialysis Patients" by Michael Emmitt, M.D. et al, shows several patients with Ca/Phos proucts well below 60 (I see one with 45.45). In reference to the New England Journal of medicine - I am not convinced and I will tell you why. My Braintree Laboratories (PhosLo manufacturer) representative pointed out to me that Genzyme (Renagel manufacturer) gave patients 6000mg of calcium a day during these clinical studies on coronary artery calcification - That would be equivilant to 36 phoslo a day (phoslo has an elemental calcium of 169mg per a pill) - the average patient takes only 9 phoslo a day. So in this study patients are pumped full of excess calcium just so Renagel can try to make a case. From what I hear from elder dieticians, Calcification has been an issue long before these binders came out on the market. High phosphorus levels are the main culprit in increasing serum calcium levels (drawing calcium from the bone), due to the parathyroid hormone. This is what cause soft tissue calcification (hence contributing to the coronary artery calcification). I also have a big problem with emotional stability of patients in reference to this issue. I won't put up the posters the Renagel(genzyme) representative brings me because they are so gruesome looking (in case you are not familiar with it, there is one poster with pictures of hands showing bumps from soft tissue calcification). ESRD patients like yourself are already having a difficult time dealing with their emotions in reference to their condition, they don't need to be seeing those pictures. I carefully weigh and assess all of my patients conditions and dietary requirements. I am very well informed.

That you would deny your patients the benefits of a new modality speaks for itself. Refer to stats from 1998 and you miss the point. Disregard the NEJM and you lose the support of other professionals. I know my results because I live with it day to day. The dieticians, whether inspired or not come in once a week, look at the phosphorus and assume patients are non-compliant. Phoslo was part of my life every day for three years and thirty a day didn't work. My cal/phos got to 99. My dieticians had no idea what the product could do. I am greatful to this web site for leading me to the right research articles. I do a lot of research. In this way, I've greatly increased my qulity of life. Maybe you believe you are doing your best with platitudes and pamphlets, but denying new technology can only be considered cruel. Add to that the new stats on lead content in calcium supplements and you have a more serious profile of promised complications. Education is a blessing to the chronically ill. It's our only hope. Please don't play God with your patient's lives.

I am sorry, but you are really out in left field on this topic.
Just to let you know Renagel representatives are giving out that 1998 information presently - I am dictating no more than what they are currently providing. I ignore the NEJM article because it is nothing more than a marketing ploy for a company who has not seen any success with its product because IT DOES NOT WORK WELL and is so expensive for so many patients on fixed incomes! Calcification has been an issue for over 30 years - long before phosphate binders were readily used. It is due to poor phosphorus control that serum calcium levels increase - Products like Renagel that fail to control phosphorus as well as patient compliance with medication and diet. I am sorry that the truth is hurtful to you. Again, I apologize that you are in this condition - I really do appreciate what you go through on a daily basis, and know it is difficult.

You both bring in a good argument on this topic of Renagel vs Calcium binders. But I am sorry to say that it has also been my experience as a renal RD that pts who take 30 phoslo a day must have some source of high phosphorus. There should be no need for this dose of phoslo....in fact I have never seen it....well only in a couple of my most noncompliant patients. Look the point is that you are a patient who has now attained some control and new understanding of whats going on with your bones. You have searched out and found your self some valuable inofrmation. I wish more of my patients would do the same. Maybe now you can keep your numbers normal, maybe Renagel will work for you.

As RD's we cannot support one product or we will be biased. Especially one that is so costly (over $150 for 30 pills). When a company is so new with such an expensive medicine its wise to be cautious. It wouldnt be surprising if they qouted research that supports their drug, they need to make a profit for the research they have done. Besides we have all been trying Renagel around the US and the results arent favorable and patients dont want to take so many pills. Even Renagel knows they have flaws. Why do you think they went back to the drawing board to make new stronger pills?
Which are even more expensive. Maybe the new pills will work but until then each patient has to be individualized, and "parroted" at.

As RD's we are aware that high calciums are a problem (and caused by poor phos control) and one the entire dialysis community has to work on including the patient. So...like it or not your role as a patient is still to avoid high phosphorus foods. Squak!

I find this discussion very interesting. I am a HD pt and find it hard to control my phosphorous levels with diet changes. I take quite a bit of phoslo also. I don't know much about renagel and would like to know more but no one at my center seems to be very helpful on the topic. I guess what I'm hearing is that it may not work that well at lowering phosphate and it sounds expensive. Can someone tell me how much it costs for a months worth? How many pills do you have to take every day for ir to work? Also if I start taking it, can I stop it after or lower my dose by taking both phoslo and renagel at the same time? I would be thankful for any reply.

I'm in renal failure and will soon start dialysis. I'm doing the best I can as far as diet is concerned. Will I still have to take the drugs you are referring to (binders and such)? It all seems mind boggling! Also, I wasn't even able to find a renal dietician. The dietician I went to had no experience or information on renal diets. Oh the joys of living in the "boondocks"! Where does one find a good renal dietician?

This is in response to Linda - Linda, the dialysis center in which you are dialyzing is required to have a Registered Dietitian who is responsible for seeing all the patients in that unit. Talk to one of your nurses and ask them to let their dietitian know that you want to see her. She should be aware that you are a new patient, and I am sure you are on the top of her list of patients to see when she comes into the unit next. I always appreciate it when my patients let the staff know they want to see me, so please let someone know.

Thankyou Anne, I didn't start dialysis yet. Dr. gave me a script to see a dietician pre dialysis. I live about an hour from dialysis unit so I tried to get a dietician nearer to my home. Will definately see dietician in unit when I start dialysis. With all the tests, plus fistula surgery, needed someone close. From all the posts I've read, it seems some pts. aren't totally aware of all the things that contain phosphorus.

You are right about that - many patients think that if they only watch the dairy products then they are watching all the high phosphorus foods. But don't let that intimidate you. There are some patients that don't have to struggle with their phosphorus levels quite as much as others. Every patient is an individual and should be dealt with in that manner. I hope you are able to find a RD in your area soon. How long until you begin dialysis?

Thankyou Anne, I have blood work this week to see where I'm at. Had a fistula created in mid January. Just playing the waiting game. Thankyou for your advise! Wish you were in New Jersey!

My doctor tried me on Renagel because I was getting too much calcium from the Calci-Mix that I use as a binder. Well, I barfed my guts up EVERY time I tried to take it! Renagel may be great for some people, but I literally can't stomach it!

Yes renagel can be hard to tolerate. The new formulation, available in 400mg & 800mg seem to be more readily tolerated than the 403 capsules. But, I have found that taking most of the renagel directly before ingesting the meal, and a few after/ on top, helps in digestion. Any alcohol will generate nausea, I'm not sure why but it's succinct. I don't have fluid retention problems, and find that water helps the whole process proceed. Renagel is no magic bullet, but if you can find a way to toletate it, it will help keep your cal-phos level down, which is very, very important. Good luck.