Is anyone else excited about Extraneal?

No. It will be priced out of reach to help anyone.

Honey, are you a PD patient? Your answer was very negative...From my research, it sounds like this solution can help me and many patients out there...Your not excited because of price? Don't the benefits out weigh and price attached? How do you know what the price is? I will demand it from my Dr, and if he does not give it to me I will find one who will...

Dolly, There are several things about Extraneal (Icodextrin) that concern me. Prices are starting to be quoted and the one bag of Icodextrin will probably cost as much as the total about of PD solution you are currently using. However, that is not the only issue. Go to www.google.com and search for extraneal. You will find hundreds of report on extraneal. There are many from other countries where it has been used for much longer. There are even some patient chat areas. Many of these are in French and Germany but look for the "translate" button. This will somewhat translate the article so you can read them. Just educate yourself and get all the information you can. One of the things that concern me is the high incidence of skin reactions. While not life threatening, they are certainly painful for the patient. (According to patients on one of the German chat lines.) Again, my advice is to independently get as much information as you can, and not just from the people who are selling the product. It will take some digging. The biggest benefit is a little extra UF over a 2.5% glucose but almost equal to 4.25. Minimum dwell is 8 (prefer 12-16 hours). It is not going to allow you to drink a lot more. According to Baxter it will probably not change your blood glucose or insulin requirements if you are diabetic. It will eliminate 1 exposure of your Peritoneal membrane to glucose which may or may not be significant.
What are your expectations for the product?

Honey,

Putting anything foreign into your body has a consequence..Nothing is truely safe, every drug has a side effect, but not everyone is effected..PD patients have side effects with the currect solutions in the mkt place..From Rashes, to flue like symptoms and everything inbetween and above..The literature shows a remarkable improvement in UF over 2.5, but equal to 4.25....Reading many of these articles from other countries also shows that these patients feel better, and without the weight gain that you get with 4.25....I appreciate your comments, but Im scratching my head as to why your so negative on this product? If you look at the other alternative, which is hemodialysis I will pass..The likely hood that each and everyday one goes to a unit to watch others crash hard, be wheeled out in an ambulance and not knowing if you will see them again, needles in my arm, and be exposed to chemicals from the dialzers, along with many other things I could post here, I will pass...Im looking for the any option that would keep me PD...

I see many more benefits to Extraneal, after sifting through many clinicals, and reading what patients have said, then what you have posted...I don't think this is the silver bullet for PD patients, but to eliminate 1 bag that sits in the belly for 8 to 10 hours full of sugar..I will take it...

Dolly, I wish you the best and hope that Extraneal delivers what you are hoping for.
It depends on which study you read as to whether the weight and B/P increase or decrease with extraneal. The calorie absorption difference in Extraneal and the glucose only averages 100 calories. Make sure to watch your blood sodium levels as they will drop. There is some thoughts, but no studies, that extraneal may help prevent UF failure. It does appear to help kick start and increase the UF for up to 22 months. Hopefully, the industries will continue to research several approaches that will help patients to continue on PD. There are some other fluids that are available in Europe and will come here at some point.
I am glad you have research this issue for yourself. All patients need information (and not just about this product) to help them make the best decisions for themselves. My negative thoughts probably come from many, many years in this business and seeing people get disappointed.
Best of luck.

Hi Dolly

I've been reading with interest your conversations re: Extraneal. I was however a bit surprised about your comments re hemo.

I hope you are able to stay on PD for as long as you like, but if you are ever in the position where you have to go onto hemo, it is really absolutely nothing like you described in your note.

I've been on hemo for 4 years, I walk in and out of the dialysis unit three times a week, no worries at all. Yes, you do have to have needles in your arm, but they put a little local in and you don't feel a thing. I have lots of friends at my dialysis unit who are just like me. I drive myself too and from the unit and I generally feel fine, although a little tired after dialysis. The only ones coming and going by ambulance are usually those poor elderly people who are very sick, with things in addition to their renal failure.

I suppose one positive is that you have four days per week where you don't have to have any sort of treatments and can just appreciate those free days.

Having said that, I am however, about to change over to PD! My main reason is to free myself up from having to spend time at the hosptial. So I've decided to give PD a go and I'm looking forward to it. So I am enjoying reading some of the comments on this site.

I hope I have put to rest some of your fears about hemo and I do wish you all the best and hope that this Extraneal business comes through for you.

I live in Australia and I haven't actually heard of Extraneal yet (apart from on this site).

Hope you are keeping well.

Kelly

Baxter has priced this product beyond our reach. I suppose that is what happens when you have lost so much of the hemo business.

Hello all. I found this board while doing some personal research. I found myself drawn to this particular thread because I am also interesting in Extraneal. I know of someone who had a bad skin reaction (but she has a high allergy sensitivity to a lot of things), and it sounded pretty bad, but she's getting better.

My main concern is the weight gain that I've had in the last year that I've been on PD (30 pounds!). I was already overweight to begin with and I had just gotten over a lifetime of body conscience issues. I feel those issues coming back now that I've gained weight, and I'm thinking that if I didn't have as much dextrose in my system (with the extra calories), it would help tremendously in me losing weight. I feel like I'm fighting myself by doing other things to lose the weight, but not getting anywhere because of the dialysis solution.

Plus, I have to agree with Dolly about her fears about HD: I started out on HD, and I didn't like it one bit. My pressure was sporatic, I was soooo tired afterwards (sometimes I couldn't get out of the car for about 15 minutes!!!!), and I couldn't work full time anymore (which is a big issue for me...not ready to retire yet!). So PD was the answer. And transplant *shudders*...I'm too paranoid about it (and that's not to say that I haven't read up on it..I'm just not a good hospital patient and just thinking about it makes me want to curl up in a ball).

So anyway, that's my thought on the matter.

The calorie difference in the one exchange of extraneal verses other PD solutions is only equal to about 1 slice of bread per day. The loss of 100 calories per day would give you less than a 1 pound weight loss per month.

I have learned that the company that my clinic is associated with will not pay for the Extraneal. My PD nurse has been on them about this for a while (from what I understand).

I find this to be extremely irresponsible, regarding patient care. IMO, they should be finding a way to pay for supplies that will aid in keeping the best quality of life a dialysis patient can possibly have. I am a diabetic, and to be able to switch off from all of that dextrose would be beneficial to my health in controlling my blood sugars.

My doctor told me that she will get me more information in regards to how to get in touch with the company to express my concerns.

LadySycamore
Dialyze.org: http://dialyze.org/forums/index.php

[This message has been edited by LadySycamore (edited 03-10-2004).]

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My doctor told me that she will get me more information in regards to how to get in touch with the company to express my concerns.

Don't wait for them, call information for Mcgaw Park IL, Ask for Baxter Renal on Waukegan rd, and ask for the marketing manager for extraneal....

Baxter as others on this board have discribed, have priced extraneal 3x's the price of ordinary dianeal......

Corporate greed!!!! From what I understand, the product is collecting dust on the shelves....That is unfortunate and a disgrace because this product can help people like you and others

Extraneal is collecting dust on their shelves. Shame it could have helped alot of patients. They are pricing it high hoping the Gov't will issue a code to pay for it. Thus they sell it high. The dialysis unit makes money and finally you the patient get the benefit. They could have sold it for a 50 cent premium, made money and helped patients. good luck and there is hardly a person in the Chicago office that gives a darn about patients.

Greetings folks,
I'm a new dialysis patient up here in Canada and it's all paid for by the gov't and the kidney foundation. I've been dialising for over a month now using extraneal as my final bag for the night and there's no adverse issues whatsoever. I'm still working on getting my blood pressure down a bit and still guzzling way too much fluids but it's coming along.