I was interested to read the various comments on Renagel versus PhosLo. I want to correct a factual misstatement made by Jessica in an earlier post, as well as add some important new information.
Jessica said, "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."
If this is what Braintree is saying, then they lied to Jessica. I went to Genzyme's website to look at the FDA-approved label on Renagel, which describes their clinical trial. The label says that the Renagel patients received an average daily dose of 4.9 grams of sevelamer hydrochloride (i.e., Renagel) and the PhosLo patients received an average daily dose of 5.0 grams of calcium acetate (PhosLo). Not 5 grams of elemental calcium, but 5 grams of calcium acetate.
Then I looked at a bottle of PhosLo and found that each tablet has 667 mg. of calcium acetate. So 5 grams of calcium acetate equals 7-1/2 PhosLo tablets a day, and NOT 36 tablets.
Then I went to Braintree's website to look at the FDA-approved label for PhosLo. It says that patients should take 3-4 PhosLo tablets with each meal. Given this recommendation, there's no way that taking 7-1/2 tablets per day would result in patients being "pumped full of excess calcium."
I would encourage anyone interested in this topic to read Dr. Collins' study that was published last fall in Clinical Nephrology. It showed that Renagel patients were 50% less likely to be hospitalized than non-Renagel patients. Here's the official journal citation: Collins AJ, St. Peter WL, Dalleska FW, et al. Hospitalization risks between Renagel phosphate binder treated and non-Renagel treated patients. Clin Nephrol 2000; 54:334-41.
<Sky>
Posted
I was put on renagel as soon as it came out. It has worked effectively. I know many patients who are on it and they also say they get excellant results. My present dosage is 4 Renagels (403's) and two Tums. I would take exception to the supposed study regarding cal phos levels as mine is always nicely under 60. The new double strength 800 mgs are easier to swallow, but are currently on back order till around July as they are in such high demand. They are expensive thus not all can afford them, but those with Medicaid are approved for them. My RD recognizes their effectiveness and always promotes them first if the patient's insurance will cover them.
To Observer: You misunderstood the actual study that was done & was put into papers by the associated press. I don't agree with HOW the Braintree rep. made their statement, though. The study that was done comparing Renagel to CALCIUM CARBONATE (ie-Tums). The average amount of calcium that was given to the subjects on calcium carbonate was 6,000 mg. a day. The rep was correct in stating that this would be 30+ phos-lo a day. Each phos-lo tablet is 667 mg of CALCIUM ACETATE, and has 167 mg. elemental calcium per tablet. So, in order to get 6,000 mg of calcium per day with phos-lo, this would be 35.9 phos-lo a day. Please understand that I firmly belieive that each patient is an individual, and certain binders work better with certain patients, be it renagel, phos-lo, etc. Hope this helps.
<Jen RD>
Posted
It is obvious that you have fallen victim to the sensationalized marketing of XXXXX. I have yet to see even ONE published, scientifically sound research article that CONCLUDES that calcium-salts independently have an effect on calcification. Many of these XXXXXXX-sponsored studies have only IMPLIED that calcium-based binders MAY play a part. One very scientifically-weak study looks at oral intake of calcium based binders and its effects on calcification (Goodman). Because of the investigators failure to control such things as age, years on dialysis, Vitamin D therapy, we can extrapolate no conclusive evidence regarding calcium intake and calcification. What we can conclude--patients with calcification are much older and have dialyzed for more years than patients without calcification. The "fact" that calcified patients took twice the amount of binders in the form of calcium salts is a minor detail, not proof. It is obvious that a 35 year old patient is going to have to take more binder than a 13 year old based on dietary phosphorus intake. Renalgel definitely is useful for those patients with hypercalcemia (~20%); however, converting all patients to Renagel from calcium based binders based on such weak science is unwarranted and irresponsible. Renagel is a good idea, but our experience is that it does not control phosphorus or CaXPO4 as well as calcium salts such as TUMS or Phoslo. These are the CONCLUSIVE factors associated with mortality risk (due to calcification). XXXXXXX.
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[This message has been edited by Gary Peterson (edited 08-02-2001).]
<Jen RD>
Posted
The goal of this website is to share "ideas," not to criticize any one particular company. It is important to realize that our goals are not the same as the pharmaceutical industry. We are health care providers with motivation only to provide the best care for our patients. The primary goal of any pharmaceutical company or business is to maximize profits. The best way to do this is to eliminate competition. By exploiting inconclusive science, Company A may be able to capture the entire market with a one-of-a-kind product. It is competition that drives prescription drug costs down. The pharmaceutical industry is aware of this; this is the primary motivator for their unleashing a unique product. They can charge whatever price they wish without necessarily providing any additional benefit. However, we are not in this "business" of healthcare to maximize profits. We are here only to provide the best care for our patients. We care about the efficacy of the products and the potential risks involved (as proven through research and clinical experience). There is never a "magic potion" for treating any disease. We must continue to individualize treatments, regardless of marketing, based on the "strongest" science available. If Drug A works better than Drug B then use Drug A, and vice versa. However, don't stop using Drug A if it has not been proven to be harmful. Especially when Drug B is not as effective and is 10X more costly. Our patients do not pay for inflated drug costs; we all pay the price, while the insurance companies and drug companies reap the financial rewards.
<JUAN>
Posted
My doctor and I tried a new approach and its working well keeping my Calcium and Phosphourous under control. I take a mixture of Renagel and Phoslo. Two 800 Renagels and one Phoslo with every meal. That works well for me. Each patient must find their own balance.
Originally posted by suzanne: 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 noncomthat 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 must say that I have heard of people taking large amounts of multiple supplements to no avalil in most of those cases patients had problems with parathyroidglands I have been on dialysis fo over thirty years and ther is always going to be somethig new if it works for you fine if it doesnt find whaat does I would like to say we have a wonderful caring and informed dietician who will keep searching until she finds the right combo.We love you VENA
Posts: 5 | Location: Lynwood California | Registered: 12 September 2002
I used to take 3-4 Phoslo during each meal. Then after 5 years of this therapy my Phosphorus levels started to skyrocket and I was living on Benedryl. My nephrologist was even starting to talk to me about surgery on my neck to remove glands. Then neph. switched me to Renagel 3 tablets with meals and my phosphorus is in the 3 range. I am sick and tired of the hospital and not going through needless surgery unless everything else fails. And NO I did not do anything to my diet.
<patient>
Posted
does renagel have AL in it?
<A Renal RD>
Posted
I have seen Mr. Micone's arguments not only in this forum but also in others.
To his defense, he is obviously a proactive patient who is looking out for his own welfare.
However, I believe he is a victim of the old bandwagon.
Yes, Renagel has it's use as a phosphate binder, just as calcium, and aluminum have their uses. And now, we will have a new binder on the market in the next 2 years that will offer the renal community another option. (it will be interesting if Mr. Micone suddenly becomes the new binder's fervant advocate and starts talking down the Renagel).
Mr. Micone, let me remind you that medicine is not an exact science. We only know as much as we know today. Tomorrow we may find out something completely different. Case in point, aluminum binders, low protein diets for dialysis patients, and high fat diets for diabetics (the good old butter balls).
I doubt that you will find any medical professional who is sold on 1 theory of treatment.
Your enthusiasm for your own care is commendable, however you steadfast views could skew other patients from their appropriate treatment.
My suggestion is to read, ask, comment. Don't profess.
Has anyone tried the extra step of demineralization? Wendy Jones new book "Healthy Living with Demineralization" details a method of leeching K and Phos from a variety of foods (besides just potatos) by soaking. Has anyone had success with this?
Posts: 7 | Location: Kansas City MO | Registered: 06 November 2002
Leeching is also refered to as "dialyzing vegetables". It is a process of thinly slicing potatos, soaking them in large amount of water for a few hours. The potassium leaves to potato and enters the water. The water is thrown away. (see www.ikidney.com) Yes this can be done to diced softened beans.
Posts: 7 | Location: Kansas City MO | Registered: 06 November 2002
