Coda's Story - Cushing's Disease (Coda has passed)

[DjPete1959]

Latest Updated News On Progress - SUMMARY

Hopefully this can be a resource for a real example of what you go through with a dog with Cushings and the results of using Trilostane to keep it in check.
This thread will be updated as we go through the journey.
I will also update this first post as a small summary to save people having to go through every thread.

Latest news at top..

13/12/2016
We can all learn by watching animals...

Coda was a dog. Simple. He barked, played and ran. He enjoyed every minute he had. He didn't complain or argue or be unhappy with life. He just did what dogs do and lived a full life of over 10 years.

When he got sick he got to a stage that he knew it was his time.
He didn't fuss about it.

He went into dying mode and didn't eat or drink for 5 days.
He didn't fuss. It was his time and that was where he was going.
In the end we decided to help him on his journey.

He slipped away around 11am today extremely peacefully with us around him.

What he has done for our family is priceless.

Yep he was a dog but he was much more than that.

RIP Coda

...thanks everybody for the thoughts.
just got 2 6 by 4 framed pics for my 19yo and 25yo daughters to remember our mate..
http://imgur.com/a/m1o4Q

1/12/2016
Coda is seemingly going down quickly of late.
Very slow at our walks and runs. Seems to not have much strength.
Panting an awful lot and his skin is not looking so good.
I really don't know if or how he will get through our hot summer coming up.
I have a feeling his time may be coming..

29/07/2016
Coda has been on Trilostane for 3 days now, no adverse reactions and almost straight away we noticed he was much calmer and not ravishingly hungry although he still is hungry. Water drinking slowed down also. Looking good.

25/07/2016
Coda had his first dose of medication today starting on 12.5mg or 1ml liquid Trilostane daily. It is just one 200ml glass bottle (Why not plastic in case I drop it!) and a syringe. This is liquid form and it is sort of syrupy consistency that has to be shaken.
Here's hoping..

23/07/2016
Coda will start on approx 10mg Trilostane daily from Monday 25/07/2016
His belly is very tight and big, always hungry and thirsty and he is not a happy fella.
Pics prior to meds here
http://imgur.com/a/D34vH
And here are the LDDS test results:
http://imgur.com/a/V4Hm0
Fingers crossed that he starts showing positive signs soon. Will update soon..

.................................................. ............................

Coda is a 10yr old Cavoodle
Diagnosed on 20/7/2016 but has prob had Cushings for 12 mths prior.
His symptoms are:
Drinking lots
Ravishingly hungry
Rats tail (No hair on last 6 inches)
Pot belly
Hair looking shabby
Anxious always hungry personality
Coat smells different also
Loss of energy, sleeps more

Here are pics prior to medication..
http://imgur.com/a/D34vH

Also for any Australians out there looking for a good cheap Compounding Pharmacy this is the best I have found. Great prices and excellent service:
AHS Compounding Pharmacy
54-56 Sydney Rd, Coburg VIC 3058
(03) 9383 5518
Prices for Trilostane works out to approx. $1 per 25mg tablets which is excellent.
.................................................. .................................................. ..........
My old original thread continues below...

Hi gang,
My dog has just being diagnosed with Cushings and about to start meds.

On another forum an owner said that after a few yrs of using the meds they took their dog off and he was more or less cured without the meds.
His words were that it was as if the dog had been reset.

I was wondering if anyone else has heard of this or had first hand experience.

Cheers,
Pete
Get a quick summary on Coda's Story on the first post of this thread here (http://www.k9cushings.com/forum/showthread.php?t=8097).

[DoxieMama]

Welcome! Anything is possible, though that is not the "usual" outcome from what I understand.

Can you provide us more information about your dog? What symptoms led you or your vet to test for Cushings? What tests were performed to diagnose? Please provide the results of those tests that indicate Cushing's, including only those results which are abnormal along with their reference ranges.

What medication are you starting? If it is Vetoryl (Trilostane), how much does your dog weigh?

Sorry for all the questions, but the more information we have, the better we can support you! I'm sure others will be along to provide their input before too long.

Shana

[DjPete1959]

Thanks.
He is a 10 yo Cavoodle.
Never had a sick day in his life really.
Prob last 12 mths...
he drinks a lot
Ravishingly hungry
Has lost fur off his tail last 6 inches
Seems very anxious and hunting for food all the time
Bloated stomach
Weeing a lot
Seems sad, depressed or possible in pain, hard to tell
His temperament is like owning a different dog.
Very sad to see

Had first general blood test at Vet.
Don't have results but he said there were indications of Cushings, I think he mentioned something about high liver readings?

So all day test in a few days time.
They do one blood test then another later on after administering something and see what the results are.
The test as I'm sure you would know is
low dose dexamethasone suppression test

Hope that helps.

Cheers,
Pete
Get a quick summary on Coda's Story on the first post of this thread here (http://www.k9cushings.com/forum/showthread.php?t=8097).

[Harley PoMMom]

Hi and welcome to you and your boy!



On another forum an owner said that after a few yrs of using the meds they took their dog off and he was more or less cured without the meds.
His words were that it was as if the dog had been reset.

I was wondering if anyone else has heard of this or had first hand experience.

This is definitely not the norm, a few times we have seen that when a dog's cortisol has dropped too low that warranted treatment to be stopped that, sometimes, treatment didn't need to be resumed up to a year later.

As Shana mentioned, getting copies of those tests that were done and posting the results would help us to provide you with better feedback. What dosage ( Vetoryl, right?) has the vet prescribed for your boy? Since other diseases, such as diabetes and thyroid issues, have the some of the same symptoms as Cushing's they should be ruled out, have they been?

I sure am sorry for the reasons that brought you here but glad you found us and we will help in any way we can.

Hugs, Lori

[kanga]

Didn't heard that before! Also don't have any experience about this. Hope you find some information here that can help you. Keep us update hope your dog will be cured and get better soon.

[DjPete1959]

thanks for the tips.
Yes will ask for reports on Monday when we have second blood tests.
he ruled out diabetes and thyroid issues with first test and suspects Cushings.
I will update here after Monday and hopefully will have copies of both test results

Cheers,
Pete
Get a quick summary on Coda's Story on the first post of this thread here (http://www.k9cushings.com/forum/showthread.php?t=8097).

[DjPete1959]

Ps.
Meet Coda...

http://i.imgur.com/NxgfuFU.jpg

http://i.imgur.com/Q9HGrnO.jpg

[Joan2517]

What a handsome boy he is! You will get plenty of information once all the test results are posted. Welcome to you and Coda...

[DoxieMama]

Hi Coda! What a cutey.

Ok, so you don't yet have a diagnosis... just "indications" based on the blood test results. Makes sense. That LDDS is "the gold standard" for diagnosing Cushing's, so it's great you're having that done next.

How much does he weigh? If the results are positive for Cushing's, the recommended starting dose of Trilostane (Vetoryl) is 1mg per pound.

Hugs, Shana

[molly muffin]

What an absolutely adorable little guy.

Yes do let us know what the LDDS test results are.

I told my vet I wanted to get copies of all the test results going back a couple years, even the wellness test, just so I can see what is going on with mine now that a cushing diagnosis is in the cards and we where starting medication. Then I post them here on my thread, one to get feedback, two I can always reference back and see what was going on when. It's been invaluable for myself. So just a thought for you. I also keep them in a book in case I've needed them.

[DjPete1959]

Thanks for the comments and feedback.
Will update Monday, (in 24hrs or so) all going well.

Also whilst I am waiting for the confirmed diagnosis thought I would do some forward planning.

I have heard there are cheaper alternatives or places to get the meds rather than the vet. Any tips appreciated. I'm in Australia

[Harley PoMMom]

To save on cost you could find an online pharmacy that may be cheaper that what your vet wants for the Vetroyl/Trilostane or you can get the dose compounded. A lot of our members use Diamondback drugs to get their dog's medication compounded : http://www.diamondbackdrugs.com/?gclid=COu81vuny8wCFYk9gQodOI8Fsg However they can not compound a dosage that Dechra (makers of Vetoryl) already manufactures so, as an example, 30 mg of Vetoryl would have to compounded to either 29 mg or 31 mg.

You may want to look at these: to help you find the best price for prescriptions (http://www.k9cushings.com/forum/showpost.php?p=183349&postcount=1)

Vetoryl - Best Site for Purchase (http://www.k9cushings.com/forum/showthread.php?t=4592&highlight=Vetoryl)

Where to get Vetoryl? (http://www.k9cushings.com/forum/showthread.php?t=6355&highlight=compounding+pharmacies)

Hugs, Lori

[DjPete1959]

Thanks Lori. I have no idea what compounded means but will do some quick Google research. Appreciate the links

[LauraA]

Hi DjPete.
I an in Australia as well. Vetoryl is the brand name of the drug, trilostane is the compounded name. I used Vetoryl for about 7 months and then changed to trilostane. I am on 30mg. The Vetoryl was costing me just over $110 for 30 tablets, when I changed to trilostane I am getting 100 tablets for $168. Works out much cheaper!! My vet uses the compounding pharmacy they work with and fax my order through to the pharmacy. Make sure you use a reputable pharmacy (this is why I went with the one my vet clinic mainly uses). Also as we are in Australia we can get any dose so even if Dechra does manufacture it we can still order that dose in the trilostane, unlike our friends overseas.

[DjPete1959]

excellent I will note that down and bring it up with the Vet tomorrow arvo when I pick up Coda.
I also sent off asking for a quote from Diamondback drugs so see what they come back with too.
Have you used Diamondback drugs, how do they compare?
Also how often do you think Coda will require blood tests as they are costing $250 each time.
:-(

Another Ozzie, That's great to know.

[LauraA]

I haven't used Diamondback, postage to Australia always seem so high so went with the local pharmacy :) The ACTH stim tests should be done approx every 3 months once you get the correct dose, though it has been 3 years for us so I have been doing it every 5-6 months. You need them often at the beginning though which is the killer. First one should be done around the 10-14 day mark and the next one around 30 days. Also in that first 30 days you don't increase the dose as the cortisol continues to drift down over that time, if the cortisol is too low though at that two week mark the dose should be reduced.

Also the drug should be given on the am with breakfast and the Stim test needs to be done approx 3-4 hours you have given the drug. You will be an expert in no time :D

[DjPete1959]

sounds like fun. What do you do...
It's a tough call.

So your dog has been on the drugs so to speak for 3 years?
Good results?

[LauraA]

Yes she was a mess to start with, no bladder control at all and spend most nights pacing up and down the hallway. The meds have really saved her life. She just turned 13 last week :) She has some kidney issues as well and I think all up her kidney tests and Stim test cost me around $260.

Also my other old girl Maggie is also a Cavoodle!! They have such a great temperament (though she forgets she will be eleven soon and shouldn't be jumping of brick walls). Unlike my grumpy, old Shih Tzu/Maltese cross Bulger, who prefers to growl and make her displeasure known lol.

[DjPete1959]

Well that's given me confidence. Coda hasn't really had a sick day in his life and he runs with me twice a week so hopefully that will help him bounce back.
All this is really helping reassure me that there is hope as for the first 2 days I was a basket case thinking he was just going to go down slowly and miserably.

Yep best temperament dog I have had.
Funny how you get attached to these little fellas.

[LauraA]

I think we are all like that at the beginning. I followed my girl every where for that first two weeks lol. She was getting sick of me stalking her. Her quality of life was quite poor to start with and we really thought we were going to have to say goodbye but my vet was really good. She has had two surgeries this year and even with Cushings has pulled up really well both times (about 6 weeks apart unfortunately). I have taken to prepaying my vet fees so by the time her Stim test comes around I have already paid for it :)

[DjPete1959]

so good to read that.
Good idea re prepay too

[DjPete1959]

Found this thread too which was extremely helpful and answered all of my other questions..
http://www.k9cushings.com/forum/showthread.php?t=8081

Dog is dropped off and pick him up tonight at quarter to 5pm.
I presume the results are straight away or do they need to be sent off somewhere so I won't know for a few days?

[LauraA]

I usually get my results the next day :)

[DjPete1959]

Ripper thanks for the help

[DjPete1959]

Got confirmation today from Vet.
He said we can do more tests but he is satisfied Cushings.

He has no prob giving me copy of tests which I should have in a day or so.
He can also give me a script to buy online which is great.

Also he understands it can get expensive and said we may be able to stretch the tests out to 3 mthly or so.
Price he said would be a little cheaper than the $250 au I have been paying as it's a diff test ATCH Test I think he said.
I am thinking I will just monitor the dog myself after the 3 mth test.

I know it's not right and I'm no Vet but my plan is to try to give the dog minimal amount of drugs but enough that it keeps him under control.

Vet said he will sort out drugs (I said I will let him source the first minimum amount, maybe a month worth) and he'll get back to me tomorrow with amount avail.
He suggest Trilostane of course too.

I am really happy with this Vet. He is a nice fellow and has really good repore with his customers, to me anyway.
As I say Coda has really never been to many Vets at all so I am lucky to have found a good friendly bloke who seems to know what he is doing.

PS I have re emailed the online company letting them know I think I require 20mg doses as the dog is 11kg.
See what prices they come back with shipped to Oz.

[DoxieMama]

Hey Pete,

I'm glad you've found a vet you are confident with to help Coda, who will work with you to provide the proper amount of Trilostane (at the least expensive price). I think giving Coda "the minimal amount" is the right thing. Why give him more than necessary? :) In order to make sure it is the minimal amount, you do have to have the ACTH test performed regularly. At first it is more often, because you don't know how Coda will respond to the drugs - he may need more or less and the only way to know that is by testing. Once you find the right amount, then you can test less frequently. But you must test to be safe for Coda.

Best of luck!

Shana

[DjPete1959]

thanks Shana. Will do

[DjPete1959]

update
Vet suggests 30ml
He will order a months worth.
$120 au

So if I order online what should I order
Just ask for 30ml for say 6 mths?
Do I order tablet so can be broken in case have to half the dose etc?
Help appreciated.

[DjPete1959]

so shopping around today in Australia for best prices on Trilostane compound.
Found a place in Coburg for anyone interested from Melb Australia.
$1.22 per 30ml capsule if ordering 200.
Great price compared to $4 a capsule from the Vet.

Here is their website
http://www.aushealthsolutions.com.au/

[DjPete1959]

I will update this thread so it may be useful for other dealing with the disease and may be a real life example on how effective the medication can or cannot be.

Coda is a 8 year old Cavoodle who has never been sick in his life.
I am very careful not to feed him junk or treats as such.

I think he probably developed Cushing's about 9mths ago which would make it October 2015.
His symptoms are:
Drinks a lot
Ravishingly hungry
Rat's tail (Lost fur)
Coat starting to look a little unhealthy
Dis-tented pot belly (Dog has never had this or been a big eater)
His temperament has also changed form being a docile dog to being always anxious wanting food and looking a little confused and to what he is doing it.

It's very sad to see how much he has changed.

He has only just had the Vet tests a few days ago. I will put the results up in a day or so, should have them tomorrow.

Vet has suggested 30mg Trilostane.

Costs so far:
2 blood tests and visits at $250 each time.
Total $500

And finally for the first post here are some pics to compare later before and after medication shots..

These are all before starting medication..
http://imgur.com/a/D34vH

I would prefer if general comments are kept out of this thread (See my other thread if you want to discuss things) as the idea is that it is easy for newbies to follow a real life example of what the results can be going on Trilostane medication.
Hopefully it will be a good outcome....time will tell and I will update here as we go through the journey.

[DjPete1959]

For anyone in Australia looking for cheaper meds I have shopped around and found this the best quote.
Instead of $4 a capsule (30mg) I managed to get the Trilostane compound made for $1.24 a cap when ordering 200 at a time.
They are in Coburg, Melbourne, Australia and the website is here
http://www.aushealthsolutions.com.au/

[DjPete1959]

I have started a clean thread just dedicated to Coda's progress with a new title so it makes more sense.
Sorry admins I thought it may be better and easier to find and follow for new people. Hope that's ok.

[DjPete1959]

a few more pics of my little bloke before he starts medication
http://imgur.com/a/D34vH

[Whiskey's Mom]

Awww he's adorable. That poor little tail :(. Hope all goes well.

[DjPete1959]

Thanks Whiskey's Mum. Clever username!

[Squirt's Mom]

We prefer to keep ALL info about each pup in one thread. That way it is easier to look back thru the history if needed. If you have some purpose other than talking about Coda's Cushing's you can start a thread in the Everything Else section - for example, if you wanted to start a thread about agility or travel or other topics unrelated to Cushing's. ;)

So I have merged this thread with Coda's original thread. Thanks for your understanding and cooperation. :)

[labblab]

P.S. I've gone ahead and edited your thread title, though, as you had wished. I'm very glad to see Coda named. ;) :)

Marianne

[DoxieMama]

Hey Pete,

I have a couple thoughts from your posts. First, is the vet giving you 30mg tablets/capsules or 30ml liquid (in which case, what is the dose?). You said Coda weighs 11kg so if 30mg that's ~1.4mg per pound which is a little higher than the recommendation of 1mg per pound. You will have to be very diligent watching for signs of overdose.

Second, I would wait to order a large quantity online. You may need to adjust Coda's dose (either up or down) so you don't want to buy 6 months worth yet. After he has been on the dose for at least a month and you have ACTH test results showing his cortisol is regulated, then you can order a larger quantity. If you do it now, you might end up wasting that medicine (and your money).

[Whiskey's Mom]

I second what doxiemama said about just waiting to order a large quantity of Vetoryl. . Speaking as a person who's dog has been on 60, 30, 10 and now 5 mg. in less than a year. I refuse to add up the cost of my unused medicine but plan to donate it to a shelter if possible. :o

[DjPete1959]

Thanks for all your input. I have taken it all on board.
Thanks admins too for the adjustments. I would have preferred the other thread to remain with just the details of progress so it was easy for people to follow but this is also good.
It just means new people will need to sift through all the posts. I wanted a snapshot type thing. But all good.

Now here is where I am at...

Vet was great, results below...
http://imgur.com/a/V4Hm0

I am going to still order the 200 caps (compount at $1.10 per tablet) but have changed it to 25mg as vet said he should be on 24 but rounded it up to 30 so I am rounding it down to 25 which has now been ordered. (Main reason is that it is so much cheaper to buy bulk, I can just halve the caps if necessary)

I also spoke with vet re self monitoring and he agreed I can give it a go. He said I seemed like a logical thinker and would not do anything rash.
He is a stand in vet too and said the other vet is old school and doesn't believe in medicating the dog so will not do the stim tests etc, I will need to find another vet...

SO

I know a lot won't agree with this BUT
I am going to start him on half of the 25mg and monitor his symptoms for 2 weeks.
If his symptoms have improved or he is 100% then I will drop the dose again slightly to say 10ml.
I will keep doing this until I feel he is on the min amount of drugs with max benefit.

I am not sure if this method has been done before and I am not advocating it in any way but it is worth trying.

Please don't yell at me!!
:-)
I will update this thread when necessary to keep everyone up to date with progress.

By the look of it meds will be ready soon and will start late today or tomorrow..

[dsbailey]

I truly understand the idea of experimenting with pharmaceuticals and have quite enjoyed it at times myself. I wouldn't experiment and go against manufacturer tested protocols, collective experience of this group and just plain common sense with my dog as the test subject.

:confused:

[DjPete1959]

I hear you dsbailey.
I floated this with the vet and he sounded ok with it.
I love my dog and will be watching him like a hawk for any changes.
In any case I am starting with half the recommended dose and then if successful dropping off slowly from there until telltale signs reoccur eg hunger drinking, anxiety etc. I will allow 2 full weeks for any alters in dosage to take effect and will only make small adjustments up in strength if warranted.
I also work from home so am home most of the time so in a good position to monitor for any changes whether they be positive or negative.

I understand this is not the mainstream way.

[labblab]

Re: cutting and splitting the capsules -- I want to warn you that even though it is physically possible to do so (per your video), there are practical and safety reasons as to why it is not a good idea. The manufacturer of brandnane Vetoryl specifically warns against doing this. I have to assume that one reason is because you lose control of accurate dosing. Since the powdered contents of a capsule is a combination of active ingredient and also inert "filler," you have no way of knowing how much of either component is actually contained within a partial dose that you are administering from an opened capsule. This is the same reason why drug-makers warn against physically splitting unscored hard tablets -- the pills have not been engineered in a way that ensures equal distribution of the active ingredient throughout. If you keep trying to split the capsules in smaller increments, I believe you are increasing this risk even more.

Additionally, there is physical risk to you if you inhale the powder or allow skin exposure. Trilostane is a powerful drug that has been used as a human chemotherapy agent in treating certain cancers. So if you persist in opening the capsules, you should use gloves and a mask during the process.

If folks want to buy in bulk, these are reasons why we encourage them to buy lots of smaller units so that intact capsules/tablets can be combined, rather than doing the opposite as you are intending. I hope you don't feel as though I am yelling at you -- that is not the case. But my personal opinion is that you are doing Coda a disservice by not dosing him in an accurate manner. If he was my dog, I'd either go ahead and start with the intact capsules that you've already ordered, or I would order another batch of smaller size to begin with.

Marianne

[DjPete1959]

thanks for that info! Greatly appreciated.
I will have to think twice on that plan then.
:-(
Caps should be ready for pickup tomorrow so will see from there.

But I do worry that straight onto 25mg seems a lot to me and am worried he may have a reaction..I'll have to make the call but I think I may go down that track for the first month at least and see how he fairs.

[DoxieMama]

Pete, please do reconsider. As Marianne said, I would either start with the 25mg capsules as is or get a smaller dose. I absolutely wouldn't open the capsules.

I don't know if you have it available in Oz but I have heard of others getting liquid Trilostane. That would allow you to really fine tune the dose.

The bigger worry for me is that you plan on monitoring Coda without testing. The problem with that is you don't know what his cortisol levels are unless you test. He could have really low (TOO low) cortisol levels and not display any symptoms... until it's too late. If you're going to give him the Trilostane, please please test him.

Shana

[dsbailey]

Pete,

The first month is usually the most important. My girl is about 60 lbs and was started on 60 mg. The first week after me being paranoid, watching like a hawk and working from home everything seemed great. All Symptoms came to a screeching halt, I thought COOL. So my girl and her paranoid dad (me) went for an early stim test at 10 days. Her results came back in the digger with pre <1.0 and post 1.2. At that point we had to slam on the brakes, test electrolytes, wait a week and started over on 30 mg. Ten days later another test at 1/2 the recommended staring dosage she came back a little high post 7.0 so the vet suggested adding 10 mg, I insisted on 5 mg. After 30 days at that dosage she tested at post 4.2, life is good.

The point of the story is I ended up with 20 60 mg caps sitting in a package and if I'd continued down the "lets watch and don't test road" my story most likely have ended sadly. I understand your logic of starting at half of the dosage, that's a safe way to go and makes perfect sense. The problem arises when your pup maybe only needs 1/4 the dosage and you don't realize that until you have a very sick or dying dog.

The important thing is to find the "Perfect" dosage for your little buddy not just a tolerable one. Start looking at some of the pictures and listening to some of the CC stories. The spot you're looking for chemically is in the post 4 - 5 range because that can head off some of the really bad systemic effects that you may not catch until they've taken a tight grip.

I'm sorry for my first snarky reply but I get that way when animals are involved.

BTW do you think the genius in the video licked or snorted the powder left on the knife blade? :eek:

Take Care and Good Luck

Darrell and Lolita

[DjPete1959]

Thanks for all the advise. Trust me I am not on my high horse thinking I know it all and appreciate all the help.
My orig idea was to start on half dose and monitor for 2 to 4 weeks. If symptoms abated then I would back off the dosage more until symptoms came back.
I would then know where the correct dose was. Stay with that if it worked and maybe in 4 months time try slightly lower dose again.

The idea is to always be aiming for lowest dose as possible just enough to keep symptoms in check and guarantee no overdose. That is what I floated with the Vet and seemed to understand what I was getting at.
His words were you seem like a logical thinker, I'm ok with that.

I checked that vid re cutting again and sorry about that I will remove it as I was so focused on the cutting I didn't realise the rest.

Also I added Coda's results in case they was missed and would like an expert opinion from someone to double check the results. Thank you.
Here they are again..

http://imgur.com/a/V4Hm0

[flynnandian]

hi pete, i did it the same way with my dog ian. i couldn't afford all the expensive testing too, ian weighed 14,5 kg [30 pounds] and i started him on 10 mg of vetoryl. after the first pill, he stopped peeing so much and in a month all the hair was back on his tail.
he still had some symptoms, so after a month i upped the dosage.
i bought left overs from the original strips of vetoryl on the dutch ebay site and send them to a pharmacy which split them for me in 20 and 10 mg. i looked how he felt and gave him 20 mg or sometimes 30 mg when he was peeing more. never did one acth test.
not ideal at all, but he did very well this way. long walks and feeling ok.
you will have to monitor his behavior and when he has diarrhea, stops eating or something like that, stop the vetoryl till he feels better again.
i had to say goodbye to him exactly one year ago at the age of 14,5 years old.
i had no choice because i am a poor girl, but it worked out fine for my dog.

[DjPete1959]

Thanks for that. It's reassuring that someone else had tried this approach.

I am in no way advocating this but it does seem a logical approach to me and in a way, because you are always aiming for as little dose as possible, also safe. Well safe in the way that you are still giving your dog drugs and that is not completely safe and has side effects. But you have to weigh it all up and we have no option when the dog is so sick.

This is not for everyone I fully agree..
And I don't want to throw a spanner in the works with traditional approaches.

[DjPete1959]

Also does this breathing look normal?
Maybe just me but he seems to be breathing shallower and faster, maybe because of Cushing's?
https://drive.google.com/open?id=0B0uOLnDFqzB3NTVfSzlYR2VLcHc

I also have a question on Trilostane vs Lysodren.
From what I understand Lysodren actually reduces the tumor size whereas Trilostane just suppresses the effects so why don't people use Lysodren more?
Thanks

[DjPete1959]

So spoke to Chemist, they hadn't made the order up so have ordered liquid form.
I plan on starting on 10mg and watching him for 2 weeks.
I have read good stories on using Trilostane so my fingers are crossed for my little mate. Just waiting for the Vet script to be updated, pickup this arvo and should have Trilostane order tomorrow all going well.
Just want to get him going as soon as possible so at least I know we are trying something for him.

UPDATE: Script done and chemist has it but because Fri here it may be Monday.
Poor Coda a weekend will seem like a lifetime for him at the moment.
:-(

Thanks everyone for your support and help.

[Harley PoMMom]

Also does this breathing look normal?
Maybe just me but he seems to be breathing shallower and faster, maybe because of Cushing's?
https://drive.google.com/open?id=0B0uOLnDFqzB3NTVfSzlYR2VLcHc

In the video it looks like he is dreaming which could possibly make his breathing irregular.


I also have a question on Trilostane vs Lysodren.
From what I understand Lysodren actually reduces the tumor size whereas Trilostane just suppresses the effects so why don't people use Lysodren more?
Thanks

The majority (80-85%) of dogs with Cushing's have pituitary-dependent hyperadrenocorticism, meaning a tumor of the pituitary gland, which can not be decreased in size by Lysodren.

Dogs with adrenal dependent hyperadrenocorticism (ADH) require high doses of Lysodren because these types of tumors are resistant to Lysodren which is the main reason when treating ADH vets prefer using Trilostane.

Hope that helps :)

Hugs, Lori

[DjPete1959]

Thanks for clarifying Lori.
This forum is a great source of knowledge

[DjPete1959]

Coda is getting spoilt with a better quality meal.
Chopped up carrot and a little tomato some olive oil raw human consump kangaroo meat with quality wet food and a very small amount of dry food for crunch and to slow him down eating, then a raw egg on top.
He loves it.
I want to eat it.

One more day before hopefully start Trilostane

[Joan2517]

Sounds like a gourmet feast! He deserves it, he is just so darn cute!

[DjPete1959]

Thanks Joan. He's been a great dog so here's hoping we see something positive next week or so

[Joan2517]

My fingers are crossed!

[DjPete1959]

Thanks Joan..

25/07/2016
Coda had his first dose of medication today starting on 12.5mg Trilostane.
Here's hoping..

PS Does anyone have any special methods to remember dosing?
For now I have just done a recurring appoint in Outlook but I may get sick of that popping up every day of the year. :-)

[labblab]

Hi again! You ought to be giving Coda his trilostane every day alongside his breakfast, so that should make dosing very easy to remember. Trilostane must be given on a full stomach in order to be metabolized properly.

Marianne

[Whiskey's Mom]

I would set the alarm in my iPhone to go off during his breakfast so I'd be sure not to forget.

[DjPete1959]

Thanks Whiskey's Mom.
Hi Marianne,
Yes definitely giving with his meal.
See how things go next few days/weeks

[DoxieMama]

I've considered the use of the phone alarm, but haven't needed it yet. For now, I just keep the meds "next to" where I keep his food. Since he reminds me to feed him :D I remember to give him the meds, too.

[DjPete1959]

I like that one. But for me his food is in the fridge and I don't want to put my $220 Medicine bottle anywhere the kids can drop it!
Why wouldn't they put it in a plastic bottle?? :-)

[flynnandian]

good luck with starting the trilostane. hope he is tolerating it well. a 220$ bottle of liquid gold needs to be taken care of properly i agree. far too expensive to let it drop on the floor.

[DjPete1959]

yes more valuable than an expensive scotch!
Well I know it's prob the placebo effect and too early to tell but my daughter, wife and I have already agreed that he is super calm.
Gave him a much smaller meal this morning and he wasn't as anxious either.
Hoping to get him back to one meal a day as he used to eat but see how that goes.
He's in the house and not looking everywhere for food!
Seems very relaxed and comfortable and he wags his tail when we talk to him as he used to do instead of just being fixed on food.
So... so far so good.

This dog is going to get so much more love...if only so I get my money's worth out of the medicine.
Hahahha

Say hello to the people that helped fix you Coda...much more calmer and relaxed ..
http://imgur.com/a/d1xVy



Gets his second dose tonight with dinner..

[DjPete1959]

Had to add another pic. He's just outside my study and he is so chilled.
Hope I haven't overdosed him!
Joking, I doubt one 12mg dose would do that.
If I wake him he's alert and seems great.
Even his breathing seems normal and relaxed.
I hope this is not imaginitis.

Here he is.
Introducing the old Coda back again!
http://imgur.com/a/dCevi

:-)

[DoxieMama]

He's such a cutey. So how much Trilostane are you giving him? You mentioned starting at 10mg, but your last post says 12. And are you giving it to him once a day or twice a day? If once a day, though I know you don't plan on testing.... I'd recommend still giving it to him in the morning. That way, if you DO decide to test, the timing of the dose will be more conducive to doing so. :)

[DjPete1959]

Hi,

Oh I'm giving him in the late arvo to be honest because that would be my normal routine hopefully if he gets back in swing again of one meal a day.
Around 6pm.
I am going to do most by myself without tests for now giving him the min amount.
Yes it's actually 12.5mg which in liquid translates to 1ml once a day.

I am not going to up it unless I really have to after at least one month watching him, each time.
If I do then I will prob up it to 15mg or thereabouts and watch him again.
And if I am uncertain or worried I will get the test done. (I know it ain't the right way)

Fed him around half that he normally has been eating for bfast today and by the arvo around 5pm he was looking hungry again so fed him at 6.
After he ate he still looked like he wanted more, but I am hoping that's a little bit of habit.
I want to get his weight down (Slowly) as I don't think that is doing him any good. He was always a good lean healthy dog.
He definitely calms down after the meds, not sure if that's normal or not.

Already I can see he is drinking less so see how we go.

It's just so good to see him relaxed and not anxious as he was so good signs so far.

He's being really well behaved and is in the house most of the day. He's next to me in the study snoozing and relaxed at the moment.

He runs with me wed and fridays (Off the lead) so see how we go with our run tomorrow, I think he'll be great.

And thanks for your interest.

[Joan2517]

He's really adorable...please be careful doing this yourself. He really should be tested...

[DjPete1959]

I will be careful. I promise. I work from home so watch him all the time for anything unusual

[arentspowell]

How would you even know if something is wrong if you're not testing? The signs can be imperceptible. Trilostane is a very serious drug. The insert that came with our medication has a caution that pregnant women or women trying to conceive shouldn't handle it at all and everyone should wash their hands after handling it. That's a serious warning! Not trying to be harsh but it's really frightening to me that you are attempting to treat this without testing. If the levels drop too low your dog could go into an Addisonian crisis which is worse than Cushings.

[DjPete1959]

I am aware of the dangers and am proceeding with caution.
I will always err on lowering the dose never increasing.
EG As soon as the Cushings signs abate or are controlled I will always aim to reduce slightly until signs come back.
I did float this with my vet and whilst he did not officially approve it he said that was a logical approach.
I have also spoken with another person who has done similar with success.

But I hear you and understand your concern and as stated earlier this isn't for everyone.

If it does get to the stage where he is a on a higher dose such as 20 to 30mg then I would get him tested to be sure but my aim keep him on present dose or to not go over 15 if possible.

[flynnandian]

so far, so good. they are more relaxed cause the urge for food and water subsides, they are not "addicted "' anymore.
i hope your run together goes well and that he will lose some weight.

[DjPete1959]

and thanks again all for the support and help

[labblab]

So glad to hear that things are going well so far!

Marianne

[DjPete1959]

Thanks Marianne.
Early days of course but you can be assured I will keep this thread updated when there are any marked improvements or problems too.
I think a month or so down the track will be the real test.

He's not normally allowed on the couch.
I think he is taking advantage of the situation..
:-)
http://i.imgur.com/kmKEOvY.jpg

[Whiskey's Mom]

Omg what a cutie! Very clever on the couch cuddle!
I know you know this but...watch that Vetoryl and cortisol. When they say "every dog is different" they aren't kidding. We've been on a roller coaster with our guy. Good luck!

[DjPete1959]

Thanks Whiskey's Mom will watch him like a hawk.
Thanks for the help.

[Renee]

Hi Pete,

While I don't agree with your decision to forgo proper testing cortisol, for peace of mind, may I suggest you at least consent to having your pup's electrolytes monitored? I realize how expensive the ACTH testing is. Believe me -- all of us are very aware of the expense. However, electrolyte testing should be quite inexpensive. My vet charges $30 to test electrolytes.

The reason this may be beneficial is because too much vetoryl can cause imbalances in the electrolytes. Shana (doxiemama) can attest to this, as her sweet boy had these imbalances when he was getting too much medication.

FYI - the needs for vetoryl can change over time. My pug is 17 pounds. Over the last 3 years of vetoryl, we started at 20mg, worked our way up to 40mg, and have subsequently worked our way back down to 10mg per day. This is why the monitoring is so important. The body changes over time.

[DjPete1959]

Thanks for the info Renee. If he does go up in dose will consider that

[Whiskey's Mom]

FYI - the needs for vetoryl can change over time. My pug is 17 pounds. Over the last 3 years of vetoryl, we started at 20mg, worked our way up to 40mg, and have subsequently worked our way back down to 10mg per day. This is why the monitoring is so important. The body changes over time.
Whiskey started on 60 mg last Sept, then down to 30mg, then 10 mg, then 5 mg and now nothing. he weighs around 70 pounds. There have been issues but nothing blaringly obvious, even in hindsight. Best of Luck!

[DjPete1959]

Very interested in this "Going down to nothing."
That was my orig question on this thread I think as 2 other people on another forum said that they went off after a few years and the cushings was gone.

I have never heard of this but seems like there are cases?

The person on the other forum said it was as if his dog had been reset.

[Whiskey's Mom]

Well I'm not giving Whiskey his Vetoryl right now but that could change. Just watchful waiting to see if his symptoms return. There's a link on my thread to a study about larger dogs needing less and less as time goes on. And another recent post about the adrenals needing time to get back to normal. . Don't know if any of this applies to whiskey but we'll find out. Lots to think about.

[DjPete1959]

Well that's my hope that he won't have to have any maybe in a year or so.
BUT I know that is a long shot.

From most accounts it's with him forever.

My aim at least is to keep him on this low dose and re evaluate it in maybe 3 months.
If his symptoms are in check I will back off the dose slightly and see what differences there are.
If the symptoms come back then he'll go back up to the orig 12.5mg dose.

He's going really well so far.
He only had a little dry food today from bfast (Trying to ween him off entirely and go back to once a day feed so he can also lose weight) and he's not staring from the window with that anxious feed me look etc so I think the drug is helping.
He's calm and therefore I am calmer too. Win win

[Squirt's Mom]

For dogs taking Vetoryl (Trilostane) we have seen a few rare cases of apparent remission. The one I remember most is Princess. She has sadly crossed The Bridge but her story remains one of hope for many. You can read it here - http://www.k9cushings.com/forum/showthread.php?t=1324

This is not something I would recommend expecting....that mindset would probably lead to more heartache and disappointment than usual with this disease. ;)

[Renee]

I must comment on the once a day feeding theory to lose weight. I have never been one to feed once a day. I do not believe it will promote weight loss, because once a day feeding would likely cause large fluctuations in your guy's metabolism. eating one large meal than starving for the next 23 hours. I also think it can cause swings in blood sugar, of which cushings dogs are more prone to developing diabetes.

Most cushings dogs continue the medication for life, as you can see if you read the threads here. There are always going to be some dogs that go into short or long-term remission. Dechra does discuss this phenomenon, but it's not a common occurrence.

[DjPete1959]

Thanks again for the advise.
He was only having one meal a day before Cushings but I think I may be expecting too much so maybe I will stick with 2 smaller meals instead and see how that goes.

From what I have read the main reason for the weight gain is from overeating caused by Cushings but also fat metabolism changing from the disease too?
Is it too much to expect that may be under control too once the dose is doing it's job or may that possible be an issue regardless of correct dose?

[Renee]

Yea, the weight gain is from the increased hunger and the change in fat metabolism. This is why the distended belly happens; the fat redistributes. Also, because of the fat redistribution, they may appear to be more overweight than they actually are.

My girl's hunger decreased. She's always had a healthy appetite, but the intense and crazed hunger stopped. :) The weight came off slowly, although her belly has remained somewhat distended.

[DjPete1959]

Thanks Renee.
Thought that may be the case.
I suppose I am a bit in denial still and expecting that Coda will be as he used to be.
I doubt that will happen 100%.
I think I read somewhere that regardless of treating or not their lifespan is shorted to approx 2 years or so?

I have seen huge improvements already and just need to be patient re weight loss etc.
He's going really well.

[Whiskey's Mom]

Let me clarify my last post. Even though Whisk is not on Vetoryl right now-It's not something I expected to happen. And more importantly he had several ACTH tests since his diagnosis which led to the decreases in dosing. The results were sometimes surprising based on how he was acting. I know there is no cure and I'm watching for the symptoms to come back. He did well on the Vetoryl in the beginning and it really helped him. he does have an open case with Dechra because they are interested in what's been happening with him.
Also from what I've read you really can't estimate the lifespan of a Cush pup. I refuse to think about that!! :) one day at a time with these dear pups!

[DjPete1959]

Thanks for that Whiskey's Mom

[Harley PoMMom]

I think I read somewhere that regardless of treating or not their lifespan is shorted to approx 2 years or so?



That two year prognosis you read on many sites is nothing more than a number chosen based on the law of averages. Most dogs diagnosed are already fairly senior and have already lived close to their life expectancy.

Lulu, one of administrator's cushdog, was diagnosed at only three years old and lived another nine years. So, with treatment dogs with Cushing's can have a good quality of life and there is every reason to believe that they can live out their normal life span.

Hugs, Lori

[DjPete1959]

Lori, that's great news. Coda has never been overweight and never been sick so here's hoping.
Thanks

[DjPete1959]

Tip.
If your dog still has a bit of the old habit of looking for food (even after Cushing's meds) try this.

A dog bone. Simple..

Gave him a big dog bone (Real one) and he chewed on it for 30 mins and was so proud. He then stashed it in the dirt and pranced back so relaxed and satisfied that he has his emergency backup.
I am sure this helps physiologically.

We went for our run again an hour afterwards and he is just like before Cushings attitude wise. Just wanted to run sniff and wee every now and again. He wags his tail again when you talk to him and all looks good.

I think he's getting his Mojo back and loving life again..:-)

[Joan2517]

That's so good to hear. It warms the heart, doesn't it?

[Squirt's Mom]

From our Helpful Resource section - a post called "About That 2-Year Prognosis" -

http://www.k9cushings.com/forum/showthread.php?t=186

[DjPete1959]

Thanks Joan. It does for sure, knowing and seeing that they are happy again.
Excellent Squirt's Mom, that reassures me that really anything is possible.
I'll continue doing what I feel is right with all the valuable knowledge from this great forum
THANKS
:-)

[flynnandian]

hi pete, how is coda doing these days? last update was a month ago.

[DjPete1959]

Thanks for asking.
He is going well.
Still on approx 12ml of Trilostane.
Have cut back meals now to twice a day smaller meal, see pic.
He is still a little over weight so hopefully that will drop in another month or so, see pics.
I think he may even be growing hair back on his tail but that could be hopeful wishing from me.

Drinking seems completely normal but I would say he still is a little hungry but nothing like before.
He is running around again, jumping on people etc chasing birds. Just like he used to do.
So I am very thankful I found this website and Trilostane.

Here are some pics..

http://imgur.com/a/vSlLF

[Joan2517]

So happy to hear that Coda is doing well!

[DjPete1959]

thanks Joan. I still worry what side effects he will get from Cushings and also from the Trilostane, but, he seems happy and that's really all I can do

[Joan2517]

He's happy, Pete and he's beloved...that's what he needs. Try not to worry and just enjoy him...

[DjPete1959]

yep true and will do. thanks

[flynnandian]

glad to hear that coda is doing well. you can always up the dosage a few ml to see if the hair on his tail will grow back when it doesn't on the 12 ml dosage. but coda being a happy dog is the most important.

[DjPete1959]

Yes thanks that's the plan. But I just want to wait a little longer, at least 3 months and re evaluate then.
Fingers crossed he may have even settled down more by then but he's going really well. Just hoping to drop his weight a little as that can't be good for him either.

[flynnandian]

my 2 cushing dogs never got their pre-cushing's weight back. they still looked a bit pot bellied afterwards. most dogs on this forum do too. and getting older does that to dogs [and us] too. and muscle weakness due to cushing's disease, bigger liver and changed distribution of fat in the body.
but with the 2 of you running together, less food and the vetoryl, i think coda can lose some weight. good luck.

[DjPete1959]

Yes I am having that feeling too but I will give it my best shot. I think he is dropping a little weight but won't starve the poor thing either.
Although the Trilostane has been a godsend for him it still won't cure the other side effects as you say such as larger liver etc. :-(

[DjPete1959]

another video. Sorry for my ridiculous voice. :-)
https://drive.google.com/file/d/0B0uOLnDFqzB3R2RjWFlsQTNwWjg/view?usp=sharing

[flynnandian]

no, don't starve him ha, ha! maybe you can exercise him more now he is feeling better. play ball or go for a swim or whatever coda likes most. that can help him lose weight too. going to watch the new video of coda soon.

[DjPete1959]

I won't starve him. By the way. He always rolls in that same area of lawn. Thoughts? Been doing it for years :-)

[flynnandian]

my 14 year old enya does that too. and some of my ponies used to do that too in the same area every time. but those were sandy spots in the pasture, so very logical.
maybe renewing their body odor as in marking the area, habit, zen spot, special smell, who knows what drives them to do so. maybe a wild animal is rolling there too or peeing. lots of people do claim a certain chair in the house or a special coffee cup or towel etc.
so let's say this is just coda's special area of the garden. his, ha, ha!

[DjPete1959]

Yes hard to work out. Maybe a bit of OCD which we are all guilty of :-)

[flynnandian]

as long as it makes them happy, we are happy! i am glad that my 14 1/2 year old is still lean enough to do so.

[DjPete1959]

14.5yrs. That's a great run with him.

[flynnandian]

yes it is. her brother ian with cushing's disease died last summer at age 14,5 too. he suddenly became very ill and 3 days later i decided enough is enough. we both miss him very much.
hopefully you can enjoy coda's company for a long time.
i am glad that there is vetoryl, but it still is a #$%^& disease! despite treatment there is still so much internal damage to the organs, muscles and ligaments.

[DjPete1959]

Yep I can see he has gone downhill last year or 2. Suddenly. His body is changing and even his face etc so I agree although the meds help they are far from a cure

[flynnandian]

no there isn't a cure for cushing's disease exept for an operation to remove the tumor. that is very expensive and a very invasive and risky
surgery for an elderly dog. some operations are a success, a lot are not.
if you think there is more room for improval, you can always up coda's dosage with baby steps.

[DjPete1959]

yep he's never going to be 100% so I have to live with it and help him best I can. Yep he's on a little more now, around 15ml

[flynnandian]

i did it the same way with my dog ian. baby steps. it worked out well for him. he was +-30 pounds [14,5 kg]. he started at 10 mg and ended up at 30 mg. he still had some mild symptoms, but without testing i didn't want to give him more vetoryl. he walked for hours till a few weeks before he died. beautiful coat, only a bit of a pot belly. didn't look like a cushing's dog at all.
i hope it works out as well for coda.

[DjPete1959]

Reassuring to read that. Appreciated

[flynnandian]

the way you are doing it with coda, it can't go wrong. good luck!

[DjPete1959]

thanks for the support too.

[DjPete1959]

hi gang just an update on Coda.
I think it may be getting to that time.
Today he could hardly run or walk with me and had that giving up look and demeaner. Panting really heavilly and when home he could hardly go up 3 steps. His quality of life is not good although the drugs are helping with the drinking and eating. His skin is also looking bad and he is getting sores etc.

I have let the kids know and want feedback from them but I really can't see him getting through our hot summer

[Budsters Mom]

Hi Pete,
I am very sorry that Coda is struggling. :o I totally understand your thoughts here. Quality of life was EVERYTHING, when it came time to release my Buddy. It was always about his comfort and what was best for him. You know Coda better than anyone. There is no one better to assess his quality of life. Yes, it is best to have family support if possible, with everyone on the same page. However, that isn't always possible. Know that we will be here to support you in any decision you ultimately make. Again, I am very sorry.

Paws up Coda!!
Hugs,
Kathy

[DjPete1959]

Thanks for those reassuring words Kathy.
I will have to watch him over next few weeks and reassess things

[dsbailey]

I'm sorry Coda's not doing well. Where are his Cortisol levels at? Are you still self determining the Cortisol levels? What dosage did you finally settle on?

[dsbailey]

*** Worth Repeating ***


How would you even know if something is wrong if you're not testing? The signs can be imperceptible. Trilostane is a very serious drug. The insert that came with our medication has a caution that pregnant women or women trying to conceive shouldn't handle it at all and everyone should wash their hands after handling it. That's a serious warning! Not trying to be harsh but it's really frightening to me that you are attempting to treat this without testing. If the levels drop too low your dog could go into an Addisonian crisis which is worse than Cushings.

[DjPete1959]

Yes still self administering. He is on 12.5 tablet form (minimum dosage).
As far as I understand Trilostane just masks the symptoms eg drinking and eating and urinating? The disease however is still there and causing all sorts of issues with him.
Please correct me if I am wrong.

And at the end of these tablets in around 3 mths I may get his levels checked as the Vet suggested it.

[DjPete1959]

Treatment

Surgical removal of the affected adrenal gland is the treatment of choice for patients with hyperadrenocorticism caused by an adrenocortical tumor. If the tumor is inoperable, distant metastases are detected, or the patient is an unsuitable anesthetic candidate, medical therapy can be used to control clinical signs.

In the United States, medical therapy is the mainstay of treatment of dogs with PDH. But in people, endoscopic removal of the underlying pituitary tumor is the standard of care and is curative. A successful method for hypophysectomy (rather than tumor removal) has been reported in dogs with hyperadrenocorticism, but it requires substantial expertise and is unlikely to be routinely performed.

Medical therapy controls the signs of hyperadrenocorticism; it does not cure the disease. Lifelong treatment will be necessary, and owners need to commit to regular follow-up examinations. All of the options have side effects or limitations (Table 5), so provide clients with detailed information before initiating treatment.5
Because of negative experiences or poor responses, some veterinarians are reluctant to recommend treatment in dogs with hyperadrenocorticism. Although studies have not documented improved longevity with therapy, the quality of life for both patients and clients appears to be substantially improved if the disease is successfully controlled. Complications from untreated hyperadrenocorticism include hypertension, diabetes mellitus, glomerulopathy, and thromboembolism; effective regulation of cortisol secretion may protect patients from these debilitating problems.

When selecting a treatment for hyperadrenocorticism, consider likely efficacy, the cost of care (including monitoring), and the risk of adverse events. In general, both ketoconazole and selegiline demonstrate low efficacy and are not widely regarded as appropriate first-line therapies. Choosing between mitotane and trilostane requires careful thought; complications can occur with both drugs, and regular patient evaluations will be necessary. In experienced hands, mitotane is often successful, but its variable intestinal absorption, long half-life, and cytotoxic effects can be problematic. Deciding when to switch from induction to maintenance therapy with mitotane can be difficult, and clients must promptly identify changes in thirst and appetite to prevent overdose. In contrast, trilostane has more predictable pharmacokinetics and is not directly cytotoxic. Daily medication costs may be higher with trilostane, but monitoring expenses may be lower.

source: http://veterinarymedicine.dvm360.com/trilostane-therapeutic-consideration-canine-hyperadrenocorticism?id=&sk=&date=&%0A%09%09%09&pageID=2

[labblab]

hi gang just an update on Coda.
I think it may be getting to that time.
Today he could hardly run or walk with me and had that giving up look and demeaner. Panting really heavilly and when home he could hardly go up 3 steps. His quality of life is not good although the drugs are helping with the drinking and eating. His skin is also looking bad and he is getting sores etc.

I have let the kids know and want feedback from them but I really can't see him getting through our hot summer
Hello again from me. Since Coda is only 8 years old, it's not necessarily aging or irreversible disease progression that is causing these problems -- it may instead be the case that his dose of trilostane is either too high or too low. I think that's the point Darryl is making and I have to agree with him. I can't remember the reason why you have not been testing his cortisol level. If it's simply impossible for some reason, then there's nothing to be done. But if you are instead just waiting to have that done, I think the time is "now," especially if you're considering euthanasia due to these problems. If a dosage change is warranted based on the test results, you may yet see significant improvement.

It is true that trilostane will not "cure" the cause of the disease, but it is the uncontrolled high cortisol level that is responsible for both internal damage and external symptoms. So if the cortisol is maintained within the desired therapeutic range, the damage progression is slowed or halted. If the cortisol is instead abnormally high or abnormally low, the body suffers and more damage is the result.

If Coda was outwardly doing well, I'd worry less that his current dose may be inappropriate. But he is not doing well. He's so unwell that you are considering letting him go. So if ever there was a time to test his cortisol level, now would be that time if it's within your power to do so.

Marianne

[DjPete1959]

Thanks Marianne.
He is actually 10 years old.
I will get him checked soon and monitor him over next few weeks

[molly muffin]

Even 10 years old is not that much.
I would get him checked right away with an ACTH. If he gets worse I would also withhold the trilostane and see if he improves. If he is too low, then this could make a world of difference.
The other thing to think of is maybe get a cbc to see how his organs are doing over all, but the cortisol level check is imperative as things can change over time on the same dose.

Just things for you to think of but I am with Marianne here

[DjPete1959]

Sorry to say this but I am not keen to go down the road of spending more money, probably hundreds of dollars. If his time has come it has come. But I will get him checked when this dose of meds is due to be renewed. He seemed ok today so will give him the benefit of the doubt and watch him for new few days.

I love him dearly but at the same time am not keen going through all these expensive checks. Sorry

[labblab]

Dear Pete,

I must admit to being quite puzzled as to why you'd be willing to test Coda three months down the road, but not now when he really needs it most. That honestly does not make any sense at all to me. I do understand that the expense of testing can be a great burden. But if you are willing to test at all, now would be the time to do it.

If you are not willing to test now and would actually opt for euthanasia instead, then I agree with Sharlene that I would first at least try discontinuing the trilostane altogether for a while. If he is being overmedicated and his cortisol is dropping too as a result, he may become brighter and more energetic if the drug is discontinued.

As I noted earlier, the reverse may be the case and he may actually need a dosing increase. But I would never ever advise an owner to increase the dose without first actually testing the cortisol level. So if you are not willing to test now, which seems to be the case, then the safer alternative is to try stopping the medication altogether.

Marianne

[DjPete1959]

he seemed fine today so will watch him. If he has a relapse of how he was on my next run with him this friday then I might consider early tests. I want to try to do it all in one go when the meds are due as they will then give me another prescription.

Maybe it was the heat who knows but it wasn't a really hot day. Maybe he just had a bad day.

Appreciate the advice and concern Marianne.
I really don't think he is being overdosed at 12.5mg but admit there is no real way to tell bar testing.

[DjPete1959]

Well we did my run again today and he was exactly the same. He doesn't run at all. I have to wait for him everywhere and he pants a lot.
He is reluctant to come home too. Seems to hesitate and walk extremely slowly.
And he struggles again to get up 3 small steps when we have to go in the front door at home. I reckon he's telling me he's had enough.
He's a 10 year old dog that has had a great life.
I don't want to go down the road of doctors, xrays etc etc. And in the end it prob will be for naught anyway.
I will just look after him best I can with what I have. He's fine when he is home. Maybe I don't take him any more on walks..
Amazing how quickly this disease has gotten him.
Total 1.5yrs I reckon and the symptoms have started showing about a yr ago and dramatically changed him.

[molly muffin]

You could try stoping the vetroyl and see if there is an improvement.
If you are at this point with him then I do t think it will hurt and is what I would do I. This situation if testing is not an option

[DjPete1959]

i have stopped it once before for a few days and he went back to ravishingly hungry again
But will try again for say 3 or 4 days and see what happens. Is that long enough?

[DjPete1959]

Latest video of Coda
https://drive.google.com/file/d/0B0uOLnDFqzB3SGlyTWRTZENBWXM/view?usp=sharing

[flynnandian]

hi pete, i am sorry to hear coda isn't doing very well on your runs. cushing dogs don't tolerate the heat very well. mine didn't either.
do you think his skin condition is like calcinosis cutis? you can look up pics on this forum. if this is the case he could need a higher dose of vetoryl. cushing is a very complicated disease at times. i was lucky my dog did well on a low dose without testing.
i hope coda will feel better soon.

[Budsters Mom]

He looks pretty happy with that waggy tail. ;)

[DjPete1959]

Looked up Cutis and see this
https://www.google.com.au/search?q=calcinosis+cutis&num=50&rlz=1C1HLDY_enAU692AU692&source=lnms&tbm=isch&sa=X&ved=0ahUKEwiAkK-vitfQAhWGlJQKHYV4C7gQ_AUICCgB&biw=1920&bih=955
Thats not what he has. He has black markings all over his skin. Not open wounds as such.
And yes his temperament wagging tail etc when home is fine but I think it may be time, sadly to stop taking him for my run. Maybe just a weekly walk or something

[Budsters Mom]

He might enjoy a daily, short, sniffing, stroll, in the early morning or evening, when it's not too hot. Cush pups overheat quite easily. He is getting older. I certainly don't run like I used to either. ;) He still wants to spend time with you Pete, but activities do change as they age. Particularly when there are other health issues. He's a happy guy right now. I would enjoy it for as long as it lasts. This being said from someone whose pup is no longer around and missed so much.

Kathy

[DjPete1959]

yep agree.
It's just that the change has seemed so sudden although second week it has not gotten worse re run.
He has prob just said enough..I can't run much now so I will do what I can. His temperament is pretty good but of course still wants food. the drinking is under control too. I doubt he is over medicated but today is day one of a try without meds. Might try until wed when our run is on again and see if any different.
that will be day 4 so a good test.

And contrary to what some my think I am not being irresponsible.
I am doing it my way which is just a little different to the norm.
I hope people will understand that and to those who don't I'm sorry.

[Whiskey's Mom]

Hi. I agree with Kathy about the "short sniffing stroll" in the cooler parts of the day. It's a great description and exactly what we have been doing the past year. Also you should consider that his ligaments are Weaker from the Cushings so the risk is high for an ACL tear during a run. (This happened to us during a long walk).

[Budsters Mom]

Hey Pete,
I will be totally honest here. That's the only way I know to be. It's 5:00 AM on Saturday morning here. This is my ONLY day of the week, that I have to sleep in. This morning, I'm awake thinking of you and Coda. It is hard for me to even think of euthanasia when a pup is still so vital, happy and doesn't appear to be in pain. I fought like hell for a few more precious days, hours, minutes, with my Buddy. I would have made a pact with the devil to get that. Our Cush pups are ill and will not recover, without surgery, to remove the tumor. That is not an option in most cases. We manage their cortisol with medication, keeping them comfortable, for as long as possible.

Yes, treating them is very EXPENSIVE! I totally understand financial considerations and limitations. Many of us struggle, or have struggled with this. I am not judging you, but do want you to know where many of us are coming from. Our own personal experience, is all we have to refer to.

As far a treating, or not, that is up to you. If testing now, isn't an option, then I would stop the trilostane. Continuing it without testing his cortisol level, is VERY risky and dangerous. It can be restarted at a later date, if testing becomes an option. You may find that although drinking and peeing with most likely increase, that Coda may feel better over all. Increased cortisol had anti inflammatory properties and can help with a variety of issues, such as arthritis and even allergies.

Please keep us posted. We do care.
Kathy

[DjPete1959]

Thanks Kathy.
he is quite normal as far as temperament goes so I presume he is not in much pain. I have had him off trilostane for one day and already I can see he is really hungry and drinking more so I put him back on.
In fact I think I will try another 12.5mg so twice daily as he really should be on that but I didn't want to give him too much. May try that for a few days and see. I will get him tested soon when he is due for meds renew.

he is not suffering so pls don't stress. He just doesn't want to run or walk that far.

I reckon the disease is getting to his joints and that is whay he is slowing down.

There is no way I would willy nilly put him down.
it's just that I saw such a dramatic change that I thought I should prepare the family if it progresses so fast.
he seems the same over 2 weeks so see how we go.

[Budsters Mom]

PLEASE, PLEASE, DON'T DOUBLE HIS DOSE WITHOUT TESTING FIRST!!! :eek: :eek::eek: I am afraid for him, and you!

Because I care,
Kathy

[molly muffin]

Hi Pete. Sorry have been away from forum till just now. So looking at his video coda actually Looks pretty good but definitely not interested in going for a walk. Has his gait always been as it is now? The video didn't actually showing him walking much so I couldn't really tell much. The wagging tail is a good sign but I do think I would just start doing shorter daily walks with him rather than runs.
I always left Molly off trilostane for at least 4 days to determine if there was a change in anything. I'm not talking about the food, drink activity so much as the daily life things. Is there an energy increase off the trilostane. How much change in food/water intake is the increase during this time.
I wouldn't increase dosage without testing either as if there is an issue in arthritis it could become worse plus the not knowing aspect of what his levels actually are.
My Molly slowed down in her walks and energy level a great deal as she aged irrespective to the Cushing's and her mess for Cushing's. She just would get more tired and d end up carrying her home if we went too far. You learn to gage that.
Let us know how things are going with him.

[DjPete1959]

He should have been on 25mg according to the tests but I erred on the low side and halved it. I really don't think it will be dangerous to add the recommended dose but will carefully watch him.
If I take him off the meds I notice a difference within a day. Seriously so that's why I think he should have more rather than less. Or the recommended dose at least which is what I will try. I will watch him like a hawk so pls everyone don't stress. Will update as I go..

[labblab]

Pete, does Coda still weigh approx. 11 kg. (25 pounds)? If so, you're right that 25 mg. would have been the recommended starting dose, initially. If that remains his weight, I feel better knowing that you are now only increasing up to the recommended starting dose. However, just to clarify, the starting dose is based on weight and not test results. Since each dog metabolizes the drug a bit differently, that starting dose may need to be altered either up or down depending upon how each dog's body utilizes the active chemical. That's where the subsequent monitoring tests also become important as guideposts. Under these circumstances, I definitely would not increase the dose further until testing is done.

Marianne

[DjPete1959]

yes his weight is a little heavier than before but around the same. And I would not go over the recommended dose ever.
Thanks for your concern.

[Budsters Mom]

Good morning Pete. Sorry, but it's too late. The K9C Stress Ship has sailed.:o Will someone be around to watch Coda when you can't be right there with him? Things can go wrong very quickly. If he appears unwell (vomiting, diarrhea, etc.) in anyway, immediately stop the Trilostane and don't give him anymore, until he is checked out by a vet. Were you given a recovery dose of Prednisone, in case his cortisol drops dangerously low? It is a steroid that acts like cortisol in the body and can literally save a pup's life. Knowing you have that would help my stress level a least a little bit.;) I will be watching for updates. I am hoping that the K9C Stress Ship will be docking at the nearest port. ;)

Is there any way you'd be able to weigh Coda right now? A pet store perhaps, a personal scale (weigh youself. Then again holding Coda. Subract your weight from the combined weight. The result would be Coda's weight), a nearby vet, somewhere? Weight does fluctuate. I know that better than anyone.;) The recommended starting dose of trilo is 1 mg. per pound, per day. It would ease my mind to know for sure that Coda weighs at least 25 pounds, since you plan on giving him 12.5 mg. twice per day. Remember to always dose with a full meal for proper absorption.

Kathy


will carefully watch him

I will watch him like a hawk so pls everyone don't stress.

[DjPete1959]

27.3 pounds

[Budsters Mom]

THANK YOU!!!!:p

[DjPete1959]

all good
:-)

[Budsters Mom]

The K9C Stress Ship will dock tonight! ;)

[molly muffin]

Hi Pete. We are specialist at stressing. :).

So in the interest of distressing. Let us know when you increase and how coda is doing each day.

[lilosmom1508]

According to my vet as of Tuesday 11/29/2016, the recommended dose for Vetoryl is 1mg/1kg to 7mg/1kg it depends on the severity of the dogs tests and symptoms. They normally start on 1mg/1kg. That actually translates to 1mg/2.2lbs. My vet wrote his thesis on Cushing's and I have seen the kg measurement used more often in the pamphlet for Vetoryl so 25 mg isn't such a scary dose. I know that things can happen with meds. I have Graves Disease and had to deal with the same stressful dosing issues that they do with our dear pups. Except testing was once a week. I know I have the added advantage of speech to express my concerns but I do understand the fears of under or overdose and the stresses of the whole process because of my experience. All that being said, I don't think you should ever halve the meds yourself. I do think that you should give your dog the recommended dose and try as hard as you can to get the ACTH test at least quarterly. One vet in the US quoted me $500 for the test and I kept looking and found another that charges by the dogs weight for the chemicals needed and the test is $170 instead.
Testing is really the only way you will know if you are giving your dog enough meds to avoid all kinds of internal organ damage and onset of many other diseases. Endocrine diseases don't just cause problems you can see, they cause many that cannot be seen until they are far too late. Liver failure, diabetes, kidney failure, etc. The drugs aren't the only scary thing. The Cushing's itself is also causing severe issues in the body and needs to be accurately controlled. Speaking as someone who knows how bad it feels when meds that control your Endocrine system are off in anyway, please work to get your dog tested at least 2 times a year.

[DjPete1959]

Coda going fine. Will do our run again tonight and will see if any differences. he seems a little peppier to me but may be imagination. Tonight will be the test to see if he seems happier on our run/walk

[molly muffin]

Was just thinking about this today and when my dog stopped being interested in long walks. Looking back at my thread I think it was around 10 1/2 or so. She just didn't want to do them any longer so we adjusted to shorter walks so and she spent a great deal of time stopping to smell all the interesting smells along the way.
As a smaller dog her legs just got tired faster as she aged. Could be what is going on with Coda? She still lived another 4 years almost with her Cushing's.

[DjPete1959]

We can all learn by watching animals...

Coda was a dog. Simple. He barked, played and ran. He enjoyed every minute he had. He didn't complain or argue or be unhappy with life. He just did what dogs do and lived a full life of over 10 years.

When he got sick he got to a stage that he knew it was his time.
He didn't fuss about it.

He went into dying mode and didn't eat or drink for 5 days.
He didn't fuss. It was his time and that was where he was going.
In the end we decided to help him on his journey.

He slipped away around 11am yesterday extremely peacefully with us around him.

What he has done for our family is priceless.

Yep he was a dog but he was much more than that.

[Joan2517]

I'm so sorry, Pete...he was such a cutie.

[DjPete1959]

we had a great Vet. Almost all female staff and they were so good. He had a sedative beforehand everything was explained clearly. I played Dean Martin - Memories Are Made Of This and off he went without any struggle at all.
We buried him at home. My daughter was with me through the whole thing. So proud of her.
And so proud of Coda. He was a great mate and didn't wine once during his illness over the years. Amazing animals.

[DoxieMama]

I am sorry to hear of the loss of Coda. Run free, sweet boy.

[Harley PoMMom]

Oh Pete,

I am so sorry for your loss, Coda sure was a special boy. Please know we are here for you, always.

With Heartfelt Sympathy, Lori

[DjPete1959]

thanks everybody for the thoughts.
just got 2 6 by 4 framed pics for my 19yo and 25yo daughters to remember our mate..
http://imgur.com/a/m1o4Q

[Budsters Mom]

Hi Pete,

I am just reading this now. I am so sorry for your loss. :o

The photo for your girls is beautiful. Take care,
Kathy

[puhmuckel]

I am so sorry for your loss, what a pretty baby.

[labblab]

Dear Pete,

I join you in honoring Coda's life, and I am so sorry for his loss. Coda has now been added to our special memorial thread where he is surrounded by our other beloved companions:

http://www.k9cushings.com/forum/showthread.php?t=7676

Your photo image of him is beautiful, and if it would please you, I can add a copy as a photo link to his memorial line. Just let me know and I will take care of that right away.

Fare thee well, sweet little boy ~
Marianne

[Joan2517]

thanks everybody for the thoughts.
just got 2 6 by 4 framed pics for my 19yo and 25yo daughters to remember our mate..
http://imgur.com/a/m1o4Q

What a gorgeous picture of him!

[DjPete1959]

Thanks, yep a ripper shot. I think a neighbor took it with a good slr camera

[DjPete1959]

Dear Pete,

I join you in honoring Coda's life, and I am so sorry for his loss. Coda has now been added to our special memorial thread where he is surrounded by our other beloved companions:

http://www.k9cushings.com/forum/showthread.php?t=7676

Your photo image of him is beautiful, and if it would please you, I can add a copy as a photo link to his memorial line. Just let me know and I will take care of that right away.

Fare thee well, sweet little boy ~
Marianne

Most definitely Marianne and thank you for your support too.

[Squirt's Mom]

Fly free, Coda, fly free. Kiss that little dog with the wild yellow hair for me.

[DjPete1959]

one last pic.
http://imgur.com/a/jorTL
Coda's buried where the flowers are on the tanbark top left.
We get a nice view of this garden from our patio.
The arch is from my daughters recent engagement party. Lot's of memories in this garden actually

[Whiskey's Mom]

So very sorry for the loss of your sweet boy.

[rainiebo]

Hi Pete, I'm so sorry for Coda's passing. You've done a wonderful job in honoring his life. I think that's as important as the love you showed while he was with you. Why, because it allows you to say good-bye.

[flynnandian]

i am sorry too for the loss of coda. beautiful pictures.
glad that you were able to bring him home and buried him in your own garden......