Buddy, The Mighty Lizard Hunter - Suspected Pituitary Macro Tumor

An enormous THANK YOU and puppy love from Buddy to all of you. If I hadn't found your forum Buddy would still be taking Trilostane on an empty stomach and would had his ACTH Test yesterday fasted. I would have been throwing $$$$ that I can't afford down a black hole and Buddy would have had to go through the stress of an invalid test. Even worse than that, his dosage may have been changed based on the findings of the corrupted test. It could have been DISASTEROUS!
Instead I found support in an unlikely group of angels known as K9Cushings. I don't know how to begin to
thank you for being here when no one else was. A group full of love and hope. A group who believe that Buddy can have a better quality of life and are willing to guide me in my quest. Yes, the situation with my vet is unfortunate and it's tough dealing with someone who is willing to do what I want, but doesn't think I'm doing the right thing. There s so much I don't know and so much to learn. This is just the beginning for us and it's scary. It is comforting to know that you are just a click away. :)

Kathy and Buddy :D

Kathy,
the information and support that I've gotten here has been invaluable!
Had I not found this forum, Daisy's treatment would be heading down the wrong road really quickly!

The most important thing is to do your research and not assume that the vet knows it all! We're on our third vet since I joined this forum and luckily, we've found a great one.

You and Buddy have to keep them on their toes!

I sent the email below to my to my vet's office a few minutes ago. I am determined to get the word out even if they are not happy about it. I can always find another vet if it comes down to that, but I need to protect other Cushings puppies and families. That is the most important thing! ;)

FORWARDED MESSAGE

Please circulate this information to all of your doctors who work with dogs....
I called Dechra (the manufacturer of Vetoryl/Trilostane) yesterday to clear up my misconceptions regarding Trilostane's protocol.

Here's contact information for their U.S. office in Kansas:

http://www.dechra-us.com/Default.aspx?ID=365
919-327-0015

Please call or visit their website to verify the information that I'm about to relate to you.

Dechra - Vetoryl Called 4-4-13

1. Trilostane must be administered with food for proper absorption.

2. ATCH testing - No fast- Meal with medication - a smaller meal is warranted if the animal tends to get carsick. Test must be done 4-6 hours after taking meds with Breakfast. The same protocol needs to followed for future tests, so that comparisons can be made.

Vets often want to do several tests at once therefore requiring a fast. In that case, it is advisable to do the ACTH test at a different time.

Dechra was very helpful. They will be happy to talk with you about the Science behind this protocol.

I realize that you have been following a different protocol concerning ACTH testing and administration of Trilostane since it was approved in the US in 2008. Please be open to learning more so that you can help all of your Cushings dogs and families. Please don't hesitate to call me with any questions or for clarification.
Thank you,
END OF FORWARDED MESSAGE

We'll see what happens!:eek:

Kathy and Buddy

Hi Kathy,

I think your email to your vet is perfect and I commend you for your tenacity in trying to educate her. I sincerely hope that your efforts will help her safely and effectively treat her current and new patients that may cross her threshold. I honestly think she was probably embarrassed that you know more than her about the serious drug she prescribed for Buddy; hence, she fabricated a story to mitigate that embarrassement and she probably never thought you would continue to challenge her. I, for one, don't mind saying that she should be ashamed of herself.

If your vet attended class the day they covered the endocrine system in school, she would have read a chapter or two authored by Dr. Edward Feldman, a Professor at UC Davis and world renown veterinary endocrine expert. I don't think I would be wrong in saying that he has probably set the protocol for the diagnosis and treatment of many endocrine disorders treated and studied at UC Davis. I also believe that UC Davis is second only to Dechra, the manufacturer, in conducting clinical trials on Trilostane. I know for a fact that Dr. Feldman lectures to his students and worldwide audience during his conferences that Trilostane must be given with food. There is no way that UC Davis' databases reflect otherwise. The only notable difference between Dechra and UC Davis protocol is that UC Davis calls for doing the acth stim test as early as 3 hours after dosing. This is because Trilostane's effectiveness peaks at about 1 1/2 hours after dosing.

I've also listened to a lecture given by Dr. David Bruyette who contributes to Dechra's continuing education for veterinarians. If yur vet chooses to treat cushing's patients, she would do well to avail herself of that resource. Vetoryl (trilostane) is Dr. Bruyette's first choice of treatment, despite the fact that he is one of the developers of Anipryl, the first drug to be FDA approved for treatment of cushing's. Unfortunately, it is rarely effective for cushing's so it is primarily prescribed today for canine cognitive dysfunction. Dr. Bruyette also lectures that the drug must be given with a meal. We've already cited Dr. Peterson and I could continue to give you names of other renown endocrine specialists, including a few who did their own peer reviewed clinical trials that should be easily accessed on VIN by your vet.

I'll be on pins and needles waiting for your vet's response. In my opinion, she's dug herself into a hole that's not going to be easy to get out of without conceding to your knowledge. A good number of us members have discovered that some vets have a very hard time humbling themselves. We shall see, huh?

Good job, Kathy!

Glynda

Kathy,

it's sad that you had to go to these lengths, but you have it right from the manufacturer and your vet can't argue with that.

You go girl!

:)Hi,
I don't want any of you to get the wrong idea. I am not trying to be "right". I could care less about that. Up until a month ago, I never even heard of Cushings. If I was still blissfully in the dark, that would mean that Buddy was okay. I would rather not have been put in a position where I needed to know. I do not want to be seen as a some kind of renegade, doing this for the thrill of it, or for attention. I am an average pet parent. I am learning as much as I can about Cushings so that I can better care of my little Cushing's Budster. Now that I have absorbed so much from this site, I can't sit idly knowing that other Cush parents are being given the same instructions I was given without trying to remedy that. Cush pups are stressed enough. We don't need to add to it! So please, I'm not doing anything particularly noble or special. I'm just doing what I think is right.:)

Kathy and Buddy:)

Kathy,
many of us have had unpleasant experiences with not so knowledgeable vets and even those who think that they know everything.

We're simply happy that you're taking the initiative to educate yours.
Others may just go to a different vet which does nothing to help future Cushpups.

Thanks for understanding!!:)
Kathy

It is so common to have a vet that doesn't know all the protocols around the medicine for cushings, the necessary tests for cushings specifically and the importance of not going right to a cushings diagnosis and ruling out other possibilities. It's way to frequent on this forum.

My own vet is the same and went directly to 30mg of vetoryl based. I had to insist on a consult to an IMS and and Ultrasound and then pay to get that referral. At that point, I got the IMS to write on the report to my vet that 30mg is too high to start a dog under 20lbs on. (she did actual agree it was too high based on the 1mg/1lb recommendation now)

If you get a vet who doesn't know all this stuff, that can be okay, the main point thoughh as got to be that they are willing to adjust and learn with you. If they do that, then you Can have a perfectly fine relationship going forward. They just have to be willing to go that extra mile and find out.

Hopfully the more they learn, the better they will be with all their cushings pups.

hugs,
Sharlene and Molly Muffin

:) Hello to all!

Update :
Buddy is doing very well today! His allergies are under control for this moment! No wheezing, runny nose, or sneezing so far today! He is still on Benadryl three times daily. That pretty much drugs him for the majority of the day. I am going to look into another non-drowsy antihistamine as soon as Buddy stabilizes on his Trilo. I don't want to make any changes at this moment. I will be taking him for his first ACTH test one day this week. I'm not sure which day yet. I go back to work on Monday after a two-week break. It looks really bad taking off right away and it's hard for a sub to run my groups. My kids don't take changes well. Buddy's Cushing's symptoms have subsided. He is drinking much less water and hasn't been peeing as if the dam had burst. He is walking better, even running for short bursts to the cookie jar. His cookies are his regular dry kibble, but he doesn't seem to care. If it's hand fed, IT'S COOKIES!!!!!! I have to be very careful what I feed him due to so many allergies. He is still very stiff and wobbly when he first stands up after being down a while. Within a few minutes, he is allover the place!

I am sitting out in the backyard watching Buddy. He caught a lizard, then it got away. He is currently frantically zapping and pawing at the hole under the fence where the lizard disappeared. Seeing him play is a wonderful treat for me. It has been too long!!!:o

My dog Cushings dog had trouble with her liver, we gave her denamarin and it brought her liver back to normal. That supplement is expensive but it does contain Milk Thisle which is quite affordable. good Luck!

What a great happy update Kathy! I'm glad that Buddy is doing so well. That is very good news indeed.
My niece and sister have both been off for Easter/Spring break too. We actually have a couple teachers on the forum (active) with dogs with cushings. I'm sure they can all relate to what you are saying.
The good thing is that summer is coming!!! Unless you teach summer school too, you'll have a nice break.
Just get Buddy on whatever dose works best for him and I'm hoping that this is actually the one. It sounds good. :)

hugs,
Sharlene and Molly Muffin

Thank you, :)
Does anyone know if it's compatible taken with Trilostane and Benadryl?

Kathy and Buddy :confused:

Yes Sharlene, I have the Summer off. My last day of work is June 19th. I could work Summer School and money is tight with so many vet bills, but I really want to be home with Buddy. That's a decision that will have to be made eventually, but not right now. I have a few weeks to decide. Summer School is only half-days for 4 weeks. We'll see.

I know that I will need to take a day off this coming week for Buddy's first ACTH Test. The only way that I can be sure it was done according to proper protocol is to be there. If I were to drop him off before work and pick him up afterwards, I would have no idea whether the test was done within the proper time window. I also need to try to talk to Buddy's vet face-to-face regarding all that has occurred.

Thanks for reminding me that it's almost Summer!
Kathy and Buddy:):D

Ugh, you're right, you do need to be there and a face to face would probably be a lot more beneficial to understanding each other than emails. Sometimes emails just lose the emotion of the spoken word and some words can end up misinterpreted. Ugh.
I would definitely want to be home too in the summer.

I don't know of any problems with denarmarin and trilostane & benadryl but maybe one of the others that have used the combo would know for sure. I looked online and couldn't find any interactions.

hugs,
Sharlene and Molly Muffin

Hi Kathy,
You were kind enough to reply to my newbie and I just read your thread...I'm out of breath reading what you have gone through with the emergency plus all the rest. No wonder you were up at 3:55am! I am also worried about all the expenses.
Best of all though, your post saying how much better Budster is feeling now, accept for the allergy issues which I hope continue to improve.
Have most of the Cushing's symptoms dissapated? How's his tummy been? Hope your little guy continues to improve! Guess he is feeling well enough for lizard hunting which is great news!
Barbara

Hello Barbara,:)
When Buddy was Lizard hunting in the backyard it was a beautiful 78 degrees with a cool breeze. Today was Buddy's best day since he first became ill. Lately it has been difficult for me to even get him to go outside. Once he potties himself, he goes right back in and gets back into his bed. Today was different. He had a day free of wheezing, runny noses and sneezing. He has been active and involved with his regular pursuits. Those are guard duty in the doorway, lizard hunting, bird chasing, cookie begging and yapping the motorcycle across street. Most of Buddy's Cushing's symptoms have subsided. He is adjusting well to the Trilostane. His stomach has settled with no further problems.
He is still pretty weak in his hind legs. He has been getting around well in spite of it, but does move slower. Once he has been laying down for a while, he is slow getting back up and his legs are wobbly for a few minutes or so. He did feel well enough to play today and hasn't for a long time. It's been a great day! Thanks for asking,

Kathy and Buddy:D

Yay Buddy, glad he is doing so well, we all need to hear good things going on that's for sure!!! Take care :)

Hi ho, it's off to work I go!:o

Have any of you given your Cush dogs with allergies milk thistle? Buddies liver numbers are off the charts and I would like to try it.

Kathy and Buddy:)

Quote:

---

Originally Posted by Budster's Mom

Hi ho, it's off to work I go!:o

Have any of you given your Cush dogs with allergies milk thistle? Buddies liver numbers are off the charts and I would like to try it.

Kathy and Buddy:)

---

Hi Kathy,
Trixie is on Denamarin for her liver...it's the prescription milk thistle along with Sam-e. Trixie's levels are also very high. No side effects at all from this pill. After her check up that showed high liver levels she was given a Rx. At that time she was totally fine and did not exhibit such obvious Cushings symptoms so the vet said we would try the denamarin with an antibiotic before resorting to expensive tests. After 10 days on it her levels came way down..only the Alk-p remained higher, but I was hopeful at the end of the 30 days we would be back to normal. Testing a week after we finished the meds levels were back up and some Cushing's symptoms more evident. So as soon as the vet saw that he gave another 30 days of Denamarin while we worked out what to do next. Seems like a good medication.
Trixie's alk-p is 1295 and normal is 5-131 on my test. yikes. The other 2 are high too. Anyway she's at the vet now for her low dose test...and in about 2 hours I can go pick her up! It's been a long day and my nerves are shot. I can't wait for my husband and I to go spring her from the coop! Only wish I would have some answers today but guess we'll have to wait for the lab work. Then we'll know what's going on. sigh.

Hi Barbara,
Waiting is always the worst! You'll be happy when the test is over and get you baby back.

Buddy's ALKP is greater than 2000UL. The normal range is 23-212. It is so high that it couldn't be measured on the test! I am concerned about the possibility of Denamaren causing problems with his allergies. I'm taking Buddy in for his first ACTH test either tomorrow or Wednesday. I'll ask the doctor about it then.

Kathy and Buddy:)

Molly doesn't have allergies, so we didn't have to take that into consideration, but she is on the Canadian Heppato Support, which is the same as Denamarin in the U.S. Or at least it is very close to the same thing.
The vet should have an idea if it would affect the allergies, so good idea to ask him about that.

hugs,
Sharlene and Molly Muffin

Sharlene,

Quote:
The vet should have an idea if it would affect the allergies, so good idea to ask him about that.

This is the same vet that told me to fast Buddy for his ACTH TEST and to dose Trilostane on an empty stomach! :eek: I'll ask, but I don't know how much good is going to do. :rolleyes: I am better off asking this panel!:D

Thanks for you help,
Kathy and Buddy:)

Oh good gosh. You're right, wrong choice there. Still I'd ask, to at least see what he says. Hopefully one of the others on here will know more. So don't start till we get some feedback.

Sharlene and Molly Muffin

I tried to upload a photo of Buddy for my avatar. It didn't work. I will try again.
Kathy

I think it did, I see a picture of a cute little dog in a red sweater. :)

Sharlene and Molly Muffin

Why can't I see it? Kathy :confused:

Go to your profile, Edit Options on the left hand side.

Open that and you'll see an option near the bottom of the page under "Visible Post Elements" make sure that show avatars is selected, otherwise you won't see avatars.

That could be it.

Sharlene

Yes!:D
I can see the avatars now! So much cuter when I can view all the precious furbabies! :p
Thanks Sharlene

Hi Kathy,

What a handsome little guy Buddy is!

Denamarin is a combination of SAMe and silybin/silymarin. Silymarin is found in Milk Thistle. It does contain soy in the silybin -

Quote:

---

Silybin has low bioavailability. Denamarin, therefore, has been specially formulated to address this issue. It contains silybin in a complex with soybean phosphatidylcholine...

---

http://www.drugs.com/vet/denamarin.html

Unless Buddy has a known allergy to soy, this would be a good drug for the liver. If soy is an issue, you can try plain Milk Thistle and / or SAMe as two products - both are good for the liver.

You're doing a great job, Mom! Keep up the good work!
Hugs,
Leslie and the gang

Kathy;
Just wanted to tell you how absolutely adorable Budster is in his picture. He reminds me of my last dog a wheaton terrier. Hope all is well, and God Bless you and Budster.
Patti

FRUSTRATED:eek::(
I took off work to get Buddy's first ACTH test done since starting Trilo.
I called ahead to make sure that the vet that I needed to talk to was going to be there. By the time I got there, she had left on an emergency. The doctor that I did get treats his Cush pups with Lysodren and knew nothing about Trilostane. I went ahead and had the ACTH Test done, but I stayed and supervised every step of it. :D
It's too hard for me to take off another day. His pre-draw was done 4 hours and 20 minutes after his Trilo with a light breakfast. I have divided his food into three smaller meals today. He was then given the drug and brought out to sit with me. A timer was set for one hour. Then he was taken back for the second draw. Results are expected tomorrow. The doctor came out and said that there was fat in his blood so he didn't know how accurate the test would be, but what matters most is the consistency of the follow-up tests. OF COURSE THERE WAS FAT IN HIS BLOOD. HE HAD EATEN BREAKFAST!!!! FAT SOLUBLE, YA THINK!! I am so frustrated!!!!!!
I might have to end up taking Buddy to an IMS. I am having a really hard time paying for the bills as it is, but that might be my only recourse. I got copies of all of Buddy's test today. I did not have the test numbers for his low-dose eight hour test before. I have them now and will post them later when I'm less frustrated!;) I can't promise when that will be :eek::mad: Thanks for listening.

We just got home and buddy is barking at something out the front door, so he seems to be feeling okay.:)

Kathy and Buddy:)

Kathy, honestly - I wish that I had started with the IMS in the first place. Wasted too much money on two previous vets, one HIGHLY recommended, before going to an IMS where our experience was the complete opposite.

It's worth the money, it really is instead of the trial and error that the GPs will put you through.

Deep breaths Kathy. Hang in there. Of course they aren't use to seeing anything in the blood, their patients have not been giving the vetoryl with food. (head bang) The main thing is to see what the numbers actually come back as, with the most important one being the post draw number.
Just see what the number is and go from there. :) It'll be okay. Post the test results when you are ready. Anything abnormal in the blood work too, high low with normal range. This was the testing from before treatment started correct?

You did good!!! Hang in there!
hugs,
Sharlene and Molly Muffin

Hi Kathy,

You did good today and the test was done according to proper protocol, thanks to you. High lipids (fat) in the blood doesn't have any effect on the acth stimulation test so the results should be accurate. You would not be the first member to be forced to educate their vet. The problem with that is what happens if there is something we can't figure out? Sometimes paying for a specialist is value added as opposed to paying lots to our gp vets and getting little to nothing in return. I would have been ahead by at least the cost of one oxalate bladder stone surgery if I had gone to a specialist from the get to.

Glynda

Dear Busters Mom or Dad
Welcome
I am Angel Apollo's mom. I live in San Diego. Not sure were you live.
If you live close to me, I could give you some referrals. My concern is that Buster should not be having all these stomach upsets and being put on Trilostane so fast. Maybe the dosage is to high for him, and was an ultrasound done to check his organs. Also it does not cost as much as you said for testing for Cushings. You can send me a message if you like and I can give you my email and phone number if you like.
Sonja and Angel Apollo
P.s Apollo was almost 14 when he died. Each patient is different.
Hugs.

Hello Sonya,
I tried to send you a private message but I'm not sure if it went through. I would like to talk with you or email with you directly. I probably don't live more than 30 miles from you. I'm not sure how to enable private messaging. It says that I can only get messages from contacts, so I'll have to work on that. Please let me know if you got my message. It had both my email address and my home phone number. I have been very stressed by this whole thing And have become very discouraged. Any help would be appreciated.
THANK YOU!!!
Kathy

Hi Kathy,

Remember that option you did earlier to allow you to see avatars? :D:D
We're going to visit there again. :)

So, left hand side, Edit Options
Scroll down to where you see Enable Private Messaging, make sure that is checked
and right underneath it says Receive Private Messages only from Contacts and Moderators make sure that one is NOT checked. :)

You can also get email notifications of when you receive a private message.

Cheers!
Sharlene and Molly Muffin

I'm so sorry you had such a frustrating experience at the vet Kathy. This is all scary and stressful enough!! :mad: Hopefully Buddy's test results will be good though. Happy to hear Buddy is barking though...that's a good sign of spunk! Will be waiting to hear the outcome of Buddy's test.
Barbara

Still waiting for ACTH TEST RESULTS! They were supposed to be back yesterday! Ug!:confused::(

Kathy and Buddy