Welcome, Guest. Please login or register.
Did you miss your activation email?

Username: Password:
Pages: [1] 2   Go Down

Author Topic: Blasto in my family  (Read 1228 times)

dog_lover

  • Newbie
  • *
  • Offline Offline
  • Posts: 13
Blasto in my family
« on: September 05, 2009, 03:56:36 AM »

Hi- although I am a new member I have read this site on and off over the coarse of 2 plus years.  Having more time on my hands lately I feel the need to fill in the gaps of missing or miss information relating to Blasto.  Three years ago I never even hear of Bastomycosis.  Then my golden got a lesion on his foot, turns out in the end he had Blasto.  Fully recovers from it.  Next year he gets it again.  Not a relapse, but another case of it.  Getting it twice is rather uncommon, but it does happen.  I start him on another round of Sporanox, then I get sick.  Thought it was my asthma flaring up, but no.  To make a long store short, I ask my doctor for an xray and he comes back and says I have pneumonia in both lungs.  I tell him I have Blasto (fungal pneumonia) and my dog has had it twice.  He orders a blood test and a sputum test.  I told him I need a urine test which he never hear of before.  As it was, both blood and sputum tests came back negative, but the urine test was positive.   Seven and a half months of drugs later I am cured.  My dog is doing well also.  We  ended up getting Blasto from my yard in an area ( NE Minnesota) which is a hot spot for Blasto.

My advice: 

Be proactive when dealing with you or your pet.

Don't assume your doctor or vet knows all the answers, do some research and ask questions.

What is your or your pet's life really worth?

Many vets and Doctors have never even heard of a urine (antigen) test for Blasto, even though it is by far the best test out there for Blasto (92.9 % accuracy).

Make sure your doctor or vet, if you can afford it, does blood tests to determine the level of drug (steady-state serum levels) in your system.  Monitoring how well the drug is working goes a long way to beating the disease.

Blastomycois is very deadly and needs to be caught early.  I have friends who have lost family dogs and loved ones because it has not been diagnosed early enough.

Blasto does such a good job of masking itself, your body doesn't even know it's under attack.

Follow the instruction that comes with the drug.  Some drugs such as Sporanox need to be taken with or after a meal and with a cola drink or fatty foods to improve bioavailability. 

Generic vs Brand name- there is a difference when it comes to Sporanox (brand name) vs others.  I will cover that in my next topic as well as an alternative.
Logged
I want to be the kind of person my dog thinks I am.

Cathy, Bailey and Duke

  • Full Member
  • ***
  • Offline Offline
  • Posts: 224
Re: Blasto in my family
« Reply #1 on: September 06, 2009, 02:22:32 AM »

Where are you located??

dog_lover

  • Newbie
  • *
  • Offline Offline
  • Posts: 13
Re: Blasto in my family
« Reply #2 on: September 06, 2009, 05:16:56 PM »

ELy Minnesota, in the heart of canoe country.  Our vet is the best.  He has even called the Mayo Clinic to get up to date information on diagosing and treating blasto because he sees so many cases of it.
Logged
I want to be the kind of person my dog thinks I am.

Cathy, Bailey and Duke

  • Full Member
  • ***
  • Offline Offline
  • Posts: 224
Re: Blasto in my family
« Reply #3 on: September 06, 2009, 06:42:28 PM »

OK, my brother just got back from a conoe trip there.

Wilson3

  • Guest
Re: Blasto in my family
« Reply #4 on: September 07, 2009, 02:07:29 AM »

dog_lover I do have a question for you
after 2 years of reading posts you now decided after all the talk about what some think as bad (using compound drugs) you now step out of the closet so to speak?
2 years is a long time  to watch posts with out saying anything?
are you and comet related? you sound almost like the same person??
wilson3
Logged

dog_lover

  • Newbie
  • *
  • Offline Offline
  • Posts: 13
Re: Blasto in my family
« Reply #5 on: September 07, 2009, 03:41:35 AM »

I have read posts off and on for 2 years not steady.  I used it for getting information on Blastomycosis and then went to mostly professional sites and did my research.  Lots of things have happened in two years and a lot of death along the way. I now have a “little” time to check out some posts and hopefully give some good information along the way.  Do you have any studies or research on the use of powdered itraconazole?  All I can find is information and case studies on the beaded stuff.  Someone must have done some research on making powdered itraconazole more bioavailable.  I know there are new formulas coming out, but I have yet been able to find research on them.  Professionals have access to more information then we do so I may have to bug one of my doctor or nurse friends.  As I said in my other post, whether you decide to use powdered or beaded itraconazole, testing for state sterum levels is very important to make sure what you or your pet are taking is actually working like it is designed. 

On a side note- When I had blasto I did my own experiment under my doctors supervision testing two generics and the brand name Sporanox to determine the level of drug (steady-state serum levels) in my system.  I tried to be as objective and consistent as possible.  What I found out was that Sporanox had twice the steady-state serum levels in my blood as the two generics.  The two generics were almost identical in readings even though they were compounded by two different manufactures.  Both the generics and the Sporanox had sufficient levels in my blood to cure me.  I took the Sporanox in the middle of my treatment with the two generics on both ends to be as objective as possible.

I don’t know comet and I don’t believe I have read any posts.
Logged
I want to be the kind of person my dog thinks I am.

gunner

  • Sr. Member
  • ****
  • Offline Offline
  • Posts: 335
  • The other angels were busy so they sent me...
Re: Blasto in my family
« Reply #6 on: September 07, 2009, 10:43:14 AM »

Hi dog_lover,

I have read a patten application from a company in India that has developed a process for binding the powdered Itraconazole with fat molecules in order to make it more absorbable.  These will be pressed into tablet form.  The only active ingredient is bulk powdered Itraconazole and the other ingredient is some kind of vegetable fat and a water soluable coating.  Cannot remember exactly what fat was used.  Anyway, it is undergoing clinical trials at the moment and should be released in the next few years.  So far, the trials look very promising.  Because the process of making the tablets is WAY more cost effective than the polymer method, it should bring the cost of blasto treatment way down.  However, it is not yet available. 

Also, in your own self experiment, you found that generic products provided enough medicine to cure you.  Yay!  mark on the wall for generics!
regards,
Joyce
Logged
...the angels come to visit us, and we only know them when they are gone.  ~George Elliot

Kash-

  • Full Member
  • ***
  • Offline Offline
  • Posts: 123
Re: Blasto in my family
« Reply #7 on: September 07, 2009, 10:45:02 AM »

Just if you're wondering if you're the only person to be so affected by blasto, it seems to be running circles around me too.  2001, my dog caught blasto and was successfully treated.  2004, a cousin of my wife died as a result of blasto/ mis diagnosis.  A couple years later my wife's aunt has a chronic case of blasto that can't seem to be eradicated.

Just to add a few more to the conspiracy theory; 2006 Coworker's dog dies from blasto and a friend/former coworker caught blasto and was successfully treated.  I could add a couple more dogs that died from it in my hometown (at that time) but that's a little distant.

This wasn't only in one town either.  The wife's family was in Wisconsin, near Merrill and we were living in Michigan's Upper.  See, it's a conspiracy!  
Logged

mhitesman

  • Sr. Member
  • ****
  • Offline Offline
  • Posts: 377
Re: Blasto in my family
« Reply #8 on: September 07, 2009, 01:30:12 PM »

I am interested in learning what info you have regarding the "difference" between generic and brand Sporanox.  I used the generic and would be tempted to use it again if the need arose, so I am am eager to read what experience you have or know about.  My vet had told me that, by law, the generic and the brand have to be identical to each other in formulation and form -- just like any other generic vs brand drug in the market place.

Not sure why you are suspected of being me (Comet's mom) by Wilson, but I surely get the impression from that question that I am not highly regarded, which makes me sad.

thanks.
Logged
Outside of a dog, a book is man's best friend; Inside of a dog, it is too dark to read.
-Groucho Marx

dog_lover

  • Newbie
  • *
  • Offline Offline
  • Posts: 13
Re: Blasto in my family
« Reply #9 on: September 08, 2009, 02:33:26 AM »

Nice to meet you mhitesman.  I checked out some of your posts and you certainly know a lot about blasto and are proactive.  Keep up the good work.  You are an asset to this forum.  Hope your dog is doing well.

I searched for days trying to find studies on generic vs. brand name itraconazole and could find nothing.  The drug companies pay for most studies and I don’t think they really want to know if one is better than the other.  The only really difference is the way the beads are processed by different manufactures, which may affect bioavailability.   I know one generic had bigger beads than the other.  Since I was so interested in knowing I simply did the testing myself.  In the end either should work and testing for state sterum levels 2 weeks after starting the normal dosage of meds will determine if they are working.  If they are not it’s time for a change.  Sometimes vets will start with a big dose to knock down the blasto before starting the normal dose.  Also the patent usually gets sicker before showing an improvement because it takes time for the drug to build up in the body.  I know I got a lot sicker for a few weeks before turning around (scared the crap out of me).  Now I know how my dog felt.

I looked up the cost of the brand Sporanox my dog took and it was half the cost of my generic.  We both took the same 200mg dose.  Why the brand Sporanox was cheaper is that my vet got it from Canada or Britain.  He refused to pay an inflated US cost for the drug.  Maybe all vets should start getting this med from abroad.  He paid something like $3.25 for 100mg.

I didn’t realize how common blasto was around my area until I told people my dog and myself had blasto.  I would hear things like “my dog got it and died” or “my coworker got it and died” etc etc.  Not the thing I wanted to hear.  Still, I listened to their stories to learn.  Most were not proactive enough because they didn’t know blasto existed or their vet or doctor misdiagnosed and time was lost as the blasto got worse and worse.  I even had a doctor friend just a mile down the road whose dog got it and died.  He thought it was kennel cough.  He never had a human case to deal with at work so he was clueless even though he knew my dog and myself had blasto.  I wish I would have know, maybe I could have helped.
Logged
I want to be the kind of person my dog thinks I am.

Jen

  • At Home By The Fence
  • Hero Member
  • *****
  • Offline Offline
  • Posts: 614
Re: Blasto in my family
« Reply #10 on: September 08, 2009, 07:10:40 AM »

 
We keep hearing about beads vs. powder.  Is that truly still part of the issue?  Perhaps that's why I have trouble understanding this controversy, because I really feel that in the 4 years since the patent on Sporanox ran out, the generic R&D has come a very long way.  Those little Janssen Sporanox beads are old news, and it would seem that any research done would quickly reveal that.   
 
   Like most pharmaceutical companies, Janssen has even had a hand in developing the generic and bulk forms in tandem with other companies- it's hugely profitable for them to make their own product available for repackaging in generic form.
Injectibles, powders, oral suspensions, capsules, tablets (Stiefel Labs and others) - it's a gigantic mind-numbing and fast moving business, bigger than I can begin to comprehend.  And is Janssen above reproach?  Most likely not.
I fail to understand why anyone would consider those little beads to be a gold standard anymore. 
  Gunner is right, there are new fat binding techniques, new polymers, the Meltrex technique, Eon Labs, Kaken Labs and the rapid-dissolve Itra tablet, Halcygen's super-generic SUBA-itraconazole, which promises to leave other forms of Sporanox and Itra in the dust.  They're generics, "compounded" into another form-and in some cases, even more effective than those original beads. 
   So why are we stuck on the issue?  We've got people making claims that one product is proven to be inferior than the other, but nobody presenting actual proof of that claim - just insinuation, opinion, and allegation.
 
   The searches are simple. The research is there if one wishes to go through it. 
I am not qualified to disperse or attempt to dissect such technical information, and wouldn't even presume. 
This is why I advocate speaking to a professional if one has questions about formulations or where to get the ones they want at the price they wish to pay. 

And now I'm shutting up before I make myself look foolish. 
Unless that ship has sailed, which wouldn't surprise me.  My apologies y'all.
j

Logged
"so put your faith in more than steel - don't store your treasures up with moth and rust - where thieves break in and steal"
Thrice

gunner

  • Sr. Member
  • ****
  • Offline Offline
  • Posts: 335
  • The other angels were busy so they sent me...
Re: Blasto in my family
« Reply #11 on: September 08, 2009, 10:17:50 AM »

Wow Jen!

Once again your nose for finding facts is astounding.  I did a ton of research last year but none since Gunner died.  You have obviously had a look around and I am amazed at how much has changed in just one year!  Last year Sporonax was the "only/best option" in treating blasto but now, once again, we are looking at a whole new world of improvements and options.  That is so exciting!  I am heart warmed to think that more dogs and humans will face much better out comes as prices come down and more owners will be able to have better options than we did.

Also, regarding the discrepancy discovered in the study that found the generics to be out of step with the standard.  Since that has been uncovered, you can bet that the companies have straightened up their act.  The FDA is very strict on these things once they are found out.   

Thank you Jen.  You're the best.  
« Last Edit: September 08, 2009, 10:23:00 AM by gunner »
Logged
...the angels come to visit us, and we only know them when they are gone.  ~George Elliot

mhitesman

  • Sr. Member
  • ****
  • Offline Offline
  • Posts: 377
Re: Blasto in my family
« Reply #12 on: September 08, 2009, 11:30:52 AM »

Jen, if you could please post specific references for your claims that there is better treatment available today than Sporanox. 

This is big news to me, and I and my vet(s) are very interested in learning of it.  I do know there is a drug on the horizon (or is it out).  I thought it began with a "V", but I am not sure, and I read it would be even more expensive than Sporanox, so we can't be thinking of the same drug in this case.
Logged
Outside of a dog, a book is man's best friend; Inside of a dog, it is too dark to read.
-Groucho Marx

mhitesman

  • Sr. Member
  • ****
  • Offline Offline
  • Posts: 377
Re: Blasto in my family
« Reply #13 on: September 08, 2009, 12:02:12 PM »

dog_lover,
Thanks for the kind words.  This disease has humbled me greatly, and I hardly feel educated about it at all, but I am trying to come to grips with it just like so many others here and elsewhere.

The whole generic vs brand thing testing (results) is curious and upsetting.  I apologize, in advance, to those who object to what might be perceived as nit picking as I ask for more information here on your experience and opinion.  I am very interested because this has very broad implications and really makes me question some long-standing beliefs I have regarding the interchangability between generic and brand name drugs in general.  My human, as well as animal, doctors typically and routinely accept that generic is completely equivalent to brand name drug.

What conclusions have you drawn from your personal testing (with your doctor)?  Has your doctor also drawn conclusions that affect his/her likelihood of prescribing generic drugs?  Unless your tests are just random flukes that involved a "bad batch" (which there shouldn't be any, of course, but ...).   I am not sure it makes me feel that the brand drugs are completely "right and consistent" either .... after all, the same FDA is monitoring and regulating both the generic manufacturers and the brand manufacturers.






Logged
Outside of a dog, a book is man's best friend; Inside of a dog, it is too dark to read.
-Groucho Marx

dog_lover

  • Newbie
  • *
  • Offline Offline
  • Posts: 13
Re: Blasto in my family
« Reply #14 on: September 08, 2009, 12:14:43 PM »

Jen- We were talking about beaded generics and sporanox.  Or at least I was.  What makes you think we are talking about powdered itraconazole?  A simple question was asked and a simple answer was given.  Janssen does not make a generic form of the itraconazole, or at least that is what my pharmacist told me.  Our discussion was not about the new products that are coming out that show promise in treating blasto.  However, Sporanox is still the current standard that is used when developing a new generic.  Lets hope that generics such as Halcygen's super-generic SUBA-itraconazole, which claims to be 100% bioavailable, comes out soon so there will be a new and better standard to use and a more effective generic in the fight of this deadly disease.
Logged
I want to be the kind of person my dog thinks I am.
Pages: [1] 2   Go Up