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[Wilson3]

I have posted many times on here what compound/compouder/compounding means but still the term is being misused and then 20 emails in my box confused
The term that IS right for the powder itra is "BULK".... NOT COMPOUNDER
PLEASE PLEASE stop misusing this word ,dogs are being put down cause the owners feel there is NO hope cause compounding is wrong is the message they are getting from the post. I have tried to post nicely but just doesnt work and I tell you dogs are being killed for the misuse of term and the loss of hope.
 
compounding drugs is what SAVES lives! makes it easier to give the RIGHT dose.

POWDER ITRA IS CALLED BULK NOT COMPOUND?COMPOUNDER/COMPOUNDING
I would love to talk to this Dr L something he is the biggest stock holder in sporonax Iwas told so he will say to only use that.
Sorry to sound so nasty but people are confused ..Charlies owner was going to put Charlie down cause she felt that she would not be able to save him cause she was using a compounder(which really means a person that does the compounding)I just can not read emails like this any more so I posted SORRY

[Wilson3]

here are the exact words posted (I just copied and pasted it)

"Compounded Itra is also unstable and light will degrade it quickly"

The statment SHOULD read

BULK (meaning powder itra ) is unstable and light will degrage it quickly

but guess what light is not good for any itra beeded or powder  that is why the dark bottles it comes in just like every drug out there

[sknksmll]

I found this on the mira vista site


http://www.marvistavet.com/html/body_itraconazole.html

Compounded itraconazole can be made up from the prescription product (either brand name or generic) or it can be made up from itraconazole available in bulk (which is usually much less costly). The bulk substance is not recommended as it is not as stable or available to the patient's body as the prescription capsules. The capsules utilize special itraconazole-coated beads which are responsible for proper absorption of the drug. The compounding pharmacy must keep the beads intact in making their formulations.

I did call them and talked to them and My vet. And they both said the same thing you said about the bulk powder. The powder works great if given right to absorb which many people where not doing.They said all drugs need to be given the right way to make them work right.


Wilson3 THANK YOU I was so close to letting Charlie go caue I thought he had no chance,because I bought compound the right dose for Charlie. He is doing really well !

[Lolasmom]

Sorry Wilson, I understand your point here. Maybe I wasn't being clear enough when I said compounded Itra.  I tried to point out that I was talking about BULK, powdered, Itraconazole prepared by a compounder not the brand name manufacturer or a third party manufacturer.

I think its important that people know that this option is available and that it will have some benefit but if you can afford a generics of Spornax or Spornax itself, you will probably have better results with that. 

I've said this before, if Lolas numbers were lower and she weren't HW positive, I would have stuck with the powdered BULK itra.

No dogs should die, people should know all their options.  But they should also understand the pros and cons of each of those options in order to make an informed decision.   Some people may choose to start with a brand name and switch to a bulk powdered itra when they achieve lower numbers. 

Lola is starting to get apprehensive about eating.  My vet thinks it might be that the Spornax is starting to affect her liver.  We are considering taking her off the Spornax for a few weeks or going back to a bulk intra for a few weeks.

People need to understand this.  The bulk form does have advantages, in my opinion.  Besides being a lot more affordable, it didn't seem to be as hard on Lolas system.  And people need to understand that if they give their dog the bulk powdered Itra they must give it with a lot of fat and they need to keep it in the dark or opaque bottle, closed tightly.   

I hope that people will understand and explore all theri options.

[Lolasmom]

I guess the hang up here is on the word "compounder".  Because I think what I said (below) is basically the same thing that was said from the Mira Vista post above.



--------------------------------------------------------------------------------

There is Spornax (the brand name Itraconazole).  It is beaded and comes in 100mg caps.  These are sometimes sent to a compounder to be made into specific doseages.

Then there is Generic form of Itraconazole (ie Spornax).  Also in beaded form and 100mg caps.  Also sometimes sent to compounders to be made into specific doseages.

Lastly, there is COMPOUNDERS Itraconazole.  Itraconazole is the main ingredient in Spornax.  The bulk COMPOUNDERS Itraconazole is a powder.  The problem is that in this form it is not bioavailable (not absorbable) because it isn't water soluable.  Also, it is not stable in the powder form.  It is sold to compounders in Bulk jugs and everytime they expose it to light, air, glass, etc... it becomes less and less effective. 

Most beaded drugs indicate that it is time released.  This isn't the case with Spornax.  The beading of Spornax or generics is to make it bioavailability (absorbable) and to make it more stability.  Its not time released.Blasto and he is the

----------------------------------------------------------------------------------------------------------- I don't want to promote one over the other.  I just think that each case is different and people need to know the facts to make an informed decision and this decision has to be based on their needs, how sick the dog is and what they are personally capable of doing.

Personally, Lolas numbers were so high that I'm not sure she would have made it had we hadn't started her off the first 18 days on Spornax.  I wonder if the bulk powdered Itra did anything more than keep her from getting any worse.  Maybe if her numbers weren't as high as they were she would have responded more to the bulk Itra.  I don't know.

Also, Dr.Legendry didn't tell us to use SPORNAX.  He said it was his first choice with lung envolvement, followed by a beaded generic of Spornax and if that wasn't possible than the bulk powdered Itra would surfice.   I don't know about his investments, but he has dedicated his entire life to fight Blasto and he's the only person in the country who is working on a vaccine.  Both human doctors and vets accross the country defer to him on the subject.  He must know something.  I don't know how well Spornax will sell once he patents a vaccination.



 

[Lolasmom]

Wilson,

I don't mean to sound nasty either.  I've have learned a lot from you and I appreciate the help you have given me with Lola.  I know you used bulk powdered Itra and Wilson recovered.  I know you are an strong advocate for it.  But did you ever consider that maybe you just got lucky? 

Every case of Blasto is different, with different symptoms and levels of severity and there are many, many, many jugs of bulk, powered Itra at compounding pharmacies acrossed the continent.  My concern is for the seriously sick dog who gets the bulk, powdered Itra from the jug that has been sitting on the compounders shelf for the past 8 months and repeatedly exposed to light, air, glass, etc....  Why take the chance that the bulk, powdered Itra you are getting has not already greatly degraded when there are other options that are more reliable and equally as affordable, such as Fluconazole. 

The primary reasons people choose Itra is because it is slightly less toxic and slightly more effective when lungs are involved.  If you use bulk, powdered Itra your really not sure how much it has degraded by the time you get it and your not sure how much of it is being absorbed.  So you really cannot assume it will even be as effective as another option, let alone more affective.  If its not as effective you could have to be on it twice as long and that increases your chances of toxicity, so that eliminates the other reason.  Besides the liver will regenerate from the meds BUT Blasto will kill the dog without them.  So I guess I just don't understand why it make any sense to take that gamble in the first place.

When Charlies owner said they were ready to put Charlie down because they questioned the effectiveness of the bulk Itra, I have to wonder why it wasn't pointed out that there were other options.  Why was it just either bulk Itra or putting the dog down.  Fluconazole is just as affordable and very effective without the gamble.  Like I said, I think this is a personal decision and all the facts have to be known in order to make an right choice for your personal situation.  I don't think Charlies owner understood there or they wouldn't have considered putting Charlie down.     

I am very, very happy that Charlie is doing so well.  But I want to tell you that I thought Lola was doing really well when she was using the bulk powdered Itra too.  Looking back now, I can tell you that the fist 18 days of Lolas treatment, when she was on SPORNAX saved her life.   Then we switched to the bulk, powdered Itra.  She seemed fine shortly after that.  What I didn't realize was that their is a lag time with the Spornax.  It continues to work continue to improve for a while after you stop using it due to it 1/2 life (which I cannot exactly relcall at the moment but it stays in your system for a while before it even get to 1/2 it effectiveness).   Lola "seemed" to be doing great, completely back to her normal self.  But her antigen numbers never changed, they stayed off the chart for the next 3 months while we were on the bulk Itra.   The bulk powdered Itra was holding the Blasto at bay, not letting it get worse, but not improving it either.  She wasn't getting better, she just wasn't getting any sicker.  Basically, I wasted three months and exposed her to unneccessary toxicity.  After one month of being back on Spornax her antigen numbers dropped a from ABOVE a 14 (off the charts) to a 10, a readable "on the chart" level.   Did I notice it wasn't working as well as the Spornax?  Well, hind sight is 20/20 , but if your read back through my posts I state that the bulk powdered Itra seemed to be a lot easier on her system.   Duh.... it was either degraded or not being as absorbed as well.   Maybe the he amount of bulk Intra she was absorbing would have been enough to do the job if her numbers weren't as high as they were to start?  Perhaps the bulk Itra I was getting was too degraded.  I don't know?  But those aren't scenerios I SHOULD have had to consider.  Those aren't scenerios I WOULD have had to consider if I understood all the facts and understood that I had other options equally as affordable, such as Fluconazole. 

Charlie may be different, he may respond great to powdered Itra just like Wilson.  I hope he does, I really do.  It breaks my heart when we lose a dog on here.  But it is a chance they are taking when there are other options.   This has been an evolution for me.  Its taken me a long time to actually come to this this realizatio.  I'm just glad that I didn't lose Lola in the process. 

[Wilson3]

No you didnt sound nasty at all
the only problem is the  term compound is being used for powder and when you say compounder/compounding it sounds like you are saying any compound form beaded/powder/brand name or generic will not work
It is not that people should not know that the powder form has different risks

charlies owner was understanding that buy YOUR posts that compounding was bad and would not work and lots of others get that from your posts also.( i should send you the emails) this is where the mis use of the word comes in you always call "powder itra" compound/compounder/compounding itra when in fact beaded or powder brand name or genric has to be compounded to make the right dose

and as for wilson,I was told he was very close to being dead and I needed to get to the ICU,ASAP if I wanted to say good buy to him. He did not have a small case of blasto he was just about dead and told he would never make it. And money was not an issue (I did spend $8,000 and that was 4 yrs ago so that most likely would be at least $10,000 now)
Also I am not the only "lucky" case here that used the powder itra a lot more then you will know on this board have. 
But of course no other dog is/was  as sick as Lola now could they be


It also takes a good 3 months to see any real improvment  and that is from any dog taking any type of itra
as for the pee test I do not care for it cause you can do the test 5 x's in a row from same pee sample and get 5 different answers we have done it so for us we do not do it but many like it. difference of oppion again.

kind of like re testing every week or couple of weeks waste of money many on here never did all those test and these tests a lot are new and they do not even really know how relable they are

I have seen more dogs die on here using the brand name so it is just a matter of oppion

but please when talking about the powder itra please dont call it componder/compound/compounding call it what it is call powder/bulk

[dax]

seems that one of the key concepts here is to know your source for itra powder and have a sense of its quality.
my vet was not willing to write me a script for a large pharmacy in the states as they said they would be unsure of the quality, but were willing to write a repeat prescription to the local pharmacy due to familiarity with the business/quality of product.
the problem is that people will get bludgeoned by the bills if they feel/are led to believe that there are not the options, or that they are not doing  "the best" by their animals. then you have the double wammie of a sick animal in the house, and their person stressed out with thoughts of financial ruin.
wilson and lolasmom are probably both right, but just describing different sides of the (blastoed) elephant. yes, a complex disease with complex solutions, and avoiding dualistic mind is probably going to be of help.

[sknksmll]

Good Morning Everyone
I feel bad here,I am sorry I was not understanding the way the word compound was being used. Yes the word powder itra was being left out with the word compounder. I have spent close to $6000 on a dog that is deaf and almost blind.And he came this way with blasto to boot.He  has been with us only a couple months. So no money is not an issue here either. But from a lot of the postings it did sound like it was saying that if we compound itra it was a bad thing.
I have talked with my vet and I call Madison,wis. (a teaching school)(they are really big on blasto and doing a study)They told me that if the powder is used right then it is fine. But on the other side the beads need to be used right to get the best from them also. And that all or most drugs should not be exposed to light. How true any of this is I do not know.
But we are changing to the powder itra I have some ordered. My vet also said that if it didn't work they would not sell it.
I yes I did take the posts to read that compounding is not a good idea not that it was trying to say the powder itra is not good.
Sorry to cause so many problems.

[Lolasmom]

Okay, I think I understand what your saying Wilson.  It basically comes down to the word compounded.   I will make sure that I refer to it as bulk, powdered Itra from now on.   I know that a lot of dogs are lost on the brand name too.  Some are just too sick to respond to anything. 

Like I said, I think its a personal decision, but in order to make an informed decision you have to understand all the facts. 

If there was no affordable alternative, I would encourage the use of bulk, powdered Itra.  But there are alternatives. You just never really know what your getting, the extent it is already degraded or the extent for which bulk, powdered Itra it is being absorbed.  My understanding is that the FDA only approved compounders to make up capsules of bulk, powdered Itra for veternarian use to treat mange.  While mange is uncomfortable, its not usually deadly like Blasto.  Compounders don't test the effectiveness of the bulk, powdered Itra before distributing it capsules and the bulk, powdered form.  It is primarily distributed to be used in manufacturing of Spornax, generics and suspensions.  During this process it is all used at one time and degregation is minimized.  Everytime the jug of bulk is opened and exposed to light, air, glass it is degraded.  The bulk that is touching the sides of the jug has been degraded.  I just wonder how many times a compounder is opening up a jug of bulk, powdered Itra and taking out enough to make 30- 125mg capsules.  If you think about it, that is not very much product.  How long is the product sitting on the compounders shelves?  I seriously doubt that the compounder is throwing away a half used jug of bulk powder Itra just because it has degraded.  If its not expired or yellowed, or bad, they are going to continue making it into caps regardless of how effective it may or may not be. 


Its a crap shoot as to what your are getting.  And the reasearch shows that dogs who were successfully treated with the bulk, powdered Itra had a greater chance of relapse.  In consideration of the research done and my personal experience with it, I could not recommend it in clear conscious.

When Lola got her Mira Vista report after being on the bulk, powdered Itra for 3 months, her numbers were still off the charts.  The Itra Lola was taking was ALWAYS took with lots of fats, her entire diet revolved around fats at that point. It was kept in sealed, opaque bottles and used correctly.  Confused as to how she could appear to be doing so well and still have numbers off the chart, I phoned Mira Vista and talked to them personally.  I talked to them about running the test to check for absorbtion (to see if enough Itra was being absorbed).  They asked me if I was using bulk, powdered and I told them yes.  And they told me to save my money, the test was pricey and they could already tell me that enough wasn't being absorbed.  They told me that they have had very, very few absorbtion tests come back good when bulk, powdered Itra was used.  Lola didn't get her first positive until we completed the  first 18 days on Spronax. They explained that they had changed the  way they produced their numbers between Lolas first test and this second test after she had been on the powdered Itra for 3 months.  But in correlating the two, their was very little, if any change and that they would expect to see a minimum of 1-2 point decrease per month if the levels were adaquate.

Im not sure if the Mira Vista test is perfect either, but its the most perfect that we have and I know that you didn't discontinue Wilsons meds until he had a negative Mira Vista test. So you must have had some faith in the test. 


http://www.aapsj.org/view.asp?art=aapsj070229
Antifungal drugs also are subject to instability. Itraconazole is frequently compounded from bulk drugs or the proprietary capsules. However, during compounding, inactivation may occur. Itraconazole is insoluble in water and cannot be formulated into aqueous vehicles. Itraconazole may also adsorb to plastic and glassware, decreasing product drug concentrations. Recently in our laboratory, a clinician requested an assay of a 100-mg capsule of itraconazole that was formulated by a compounding pharmacist. We found that the concentrations of itraconazole or the metabolite hydroxyitraconazole were undetectable from the compounded capsule.

[Lolasmom]

But I will be sure to refer to it as bulk, powdered Itra from know on.

[Wilson3]

THANK YOU Lolas Mom!

The pee test was not around when Wilson had Blasto. We went on my gutt feelings,his vet listen to his lungs( a few x-rays also) and I also would check them at home and an animal communicator. She was the life line on healing Wilson. I have many different beliefs and faith in many different things then most people.
Wilson had a lot of energy healing done on him. He truely is a miracle. Ever vet we saw said he would never make it. Finially when I demanded his vet,he told me that from his medical record and from what all the test said he should not even be standing and he was.He shouldn't even be alive. But Wilson is a fighter. This my sound strang but his blue print in life was to teach me in my life. I know peopel say thats crazy I did not believe it at first. But the animal communicator help me to understand. she knew things that I only knew about Wilson and his past before me. ( just a few, wilson was 3 when I got him. In 5 different homes before he became my foster dog.Wilson was born when I started rescue but he was in another state. The 5 different families he entered brought him closer to our state  and the rescue group I was with.He was said to be an out of control dog and finally I was asked to foster him as a last hope for him to have a family one day. I always got the dogs no one ever wanted and thought should be put down and would turn them around. So Wilson came to me. He was a very well trained and behaved dog for me. He did test me a couple time to make sure I was ready and worthy of what he has to teach me.To be honest I have never down any training with him he just always listen when others that had him said he never listen and out of control odd I thought ,and thought of the day he came home here and Joey said we should just keep him on the ride home when we first got him.)To this day Wilson never seeks out attention from anyone but me,he is my shadow he know my ever move before I do most of the time. Everyone that meet him will want to say hello he except the few hellos and then settles right next to me he never needs a leash the vets can do anything to him even xrays without putting him under I just ask him to sit still and he does. Sorry to go  on and on and not sure it makes sence.
But back to the knowing when to stop treatment went on our gutt feelins and the animal communicator.
We did the pee test back when wilson had cancer after having blasto. We thought relapse and at this time the pee test was around but not when Wilson had blasto. We did the test and got all crazy results. The animal communicator said he doesn't have blasto like the pee test sayd so we went off to the Indian medican man. He also siad no blasto but cancer. Wilson survived cancer with his help and the animal communicator. Sounds crazy but it works for us. The madican man said Wilson and I are one.(now if you know anything about the history of aussies and indians and the white man,an aussie was held in reverence by indians because of the dogs' unusual and often blue eyes.They came to call them "ghost eyed ones".The indians left these scared (spirit dogs and their owners unharmed.So the medican man was honored to help us.

So now you have more of an idea of what we used to help wislon the pee test was not around when he had blasto and when we thought he had it again the test failed us. Which any test is never 100%so I never  knock the test many love it. I have seen it change a few times on how it reads the test from when it first came out.
Also with using any type of itra the numbers never come down to much the first few months they stay about the same. I have seen a few cases on this board that have but most take a few months. So it is hard to say. You are one in thousand that feel the powder didnt work.When Wilson had blasto just about everyone was using the powder and did surviveblasto. But dear wonderful Gunner her kidneys just had enough ,but now she greets all the others that come.
With any drug there will always be the few that it will not work as good so they say. And with any drug you need to know where you get it from and where they are getting it from. And they go through the stuff very fast .
It will be so awsume if you will use the term powder when talking about it ,as not to confuse people.   And yes if you feel so strong agaisnt it you have ever right and should share the info for others

[lilboogz79]

Wow, I miss a few days of logging into the site and you guys are all going back and forth with who's right and who's wrong. Let's remember that we are all here to try to help one another. Through the good, the bad, and the ugly! Everybody has the right to their own opinions, and I've said it before that we each have to make the decisions that we feel are right for our babies. Wilson3, even though you say you're only concerned about the usage of terminology, you have on several occasions stated that the antigen tests and the name brand Sporanox are a waste of money...thats YOUR opinion, and its fine to have but just remember that to someone like me those were the only things that saved Logan and saved my sanity! So if someone else has the opinion that any kind of generic, compounded, or bulk form of the Itra is bad and a waste of money, thats their opinion. All of our opinions are based off of what is and isnt working for our own dogs. And as for some of the 'misuse' of terminology, dont blame others decisions on that because in all honesty, every single person on the this site should be bending over backwards doing their own research!!! Everytime Lolasmom used the term compounded, I knew what she was referring to! Why, because I did my own research and also had the personal experience of the same drugs she was using not working on Logan! I'm sorry if anything I've written today offends anyone, that is not the purpose....but please, this is supposed to be a place to have friends, people who understand everything your going through, a place to vent, and to cry, and to be happy....not to be getting nasty with each other over differences that cannot be compared!!!

[Wilson3]

i fyou would read my posts it always states for us and yes the right terms do matter
I can see what this board has turn into I will be deleting my account and posts what ever I can get ride of

[lilboogz79]

That seems a bit drastic...we all appreciate info! I'm just pointing out the obvious, to everyone, that we need to go back to not "arguing" over whats right and wrong...there is no right and wrong with this horrible disease, just what works to each their own!!! No hard feelings intended to anyone!