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Cushings Disease...


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Well after 2 TWO operations and $10k later, Chloe has come on in leaps and bounds. However, she was struck down with an allergic reaction a couple months ago... since coming off meds (more than 1 month ago) she started drinking and peeing way more than normal. She seems a bit distracted and lazy, is constantly ravenous, and the rash she had on her belly from the allergic reaction never really healed and has turned her skin a little blackish. After lots of research, she shows a few of the Cushings symptoms but I wouldnt say severe... and initial urine analysis shows 99.9% sure. She will go for further tests to know whats causing it next week.

It's so upsetting, she is 10 years old soon and has been through alot with her knee ops but has been generally healthy till now. I don't want her to suffer in any way and I hate the thought of her going through all the trauma again.

I guess I just wanted to see if anyone has any good hope stories about Cushings? Or any advice please? Its just heartbreaking to know my girl is sick again...

Thank you.

Edited by Kelly_Louise
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My dog Dixie was diagnosed with Cushings 4 years ago. It was an awful time of 6 months of tests and stabilising - she has a tumour on her pituitary gland. She was about 11 or 12 at the time of diagnosis.

The vets said maximum of 3 years but she's now been here more than 4.

She has been on chemotherapy tablets which I give her myself, they are quite a hassle as they are highly poisonous for us so I have to wear gloves and put the tablet in something, make sure we are in a room away from the other dogs. That keeps her hair growing.

I used to pay for the regular tests they recommend but at $500 every 2-3 months, I couldn't afford to keep going so stopped and only get them done periodically. They make sure that the chemo dosage is appropriate.

One issue of being on the chemo is that she can't have surgery so 2 years ago, she had to come off the chemo for a few months so she could have an urgent dental. Unfortunately, they then found a growth so she hadn't been off the chemo long enough and had to go on a drip for a day before surgery. The growth was removed and was non cancerous and she lost a couple of teeth and had a clean. Unbelievably, 3 months later, when she'd had tests and gone back on the chemo, the vet said her teeth needed doing again. They haven't been done due to the chemo issues and also because she wasn't expected to live this long. The vet feels she couldn't take another surgery - it's all been quite difficult as I'd never leave a dog with bad teeth by choice.

She has the odd fit which I believe is due to the tumour.

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Thanks Dogmad! I actually read something that you had posted previously about this subject. I am glad Dixie is doing well, and whilst it is hopeful it is also very daunting and scary.

Don't get me wrong, I'd do anything for my girl. But I worry that she will suffer or that all the tests and meds etc will be too traumatic for her. She gets terribly stressed. Maybe I worry too much.

I know until we find out for sure that there is no point torturing myself... but thank you for sharing your story. It does give me hope that an old girl can cope and manage.

I read somewhere that if her Cushings is managed it might make her arthritis problems more predominant. It's so stressful. I am afraid I will make a wrong choice somewhere but I guess I can only be guided by the specialist.

I am afraid for my girl. I'm afraid I will lose her. And at only 10 I'm not ready to do that yet. She deserves to go out as an old girl who just wears out. I guess they all do though...

:)

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Kelly, I've had the opposite experience that Dogmad has had and a couple of times have thought about writing a thread so that if other DOLers do a search it will come up and maybe be of some help. From my laymans knowledge there are two Cushings causes.

Pituitary -small benign tumour in the brain -on the pituitary gland. More likely to be the cause of Cushings in smaller dogs. Inoperable and unlikely to grow any faster than the natural lifespan of the dog.

Then: Adrenal - usually malignant growth on the adrenal gland -attached to the kidney -and as stats go, the larger dogs get this one. Likely to spread. Leaps to the renal system and into the bloodstream. Getting diagnosed asap is the key.

Pituitary: once diagnosed, is the chemo treatment that Dogmad mentioned. I think it basically kills off some adrenal cells and restores the cortisol balance. Counteracting whatever the pituitary gland is doing. Sort of like cancelling out one thing by using another. If you stop treatment, the symptoms return because the underlying pituitary tumor is still there. As Cushings is an older dog disease, it's considered a fair option to treat this way and dogs simply pass of old age. It just means you need to manage a chronic condition the same as any other older dog problem. :)

Adrenal: is ruled in or out by an abdominal ultrasound. If the adrenal gland is unusually large (and I'm talking millimetres here but it is crucial) and vets spot certain indicators on blood tests then that's what they will deem as the cause.

As far as your options there, we only really pursued one so I'm not sure of all your choices but I recommend, if they offer an ultrasound, go for it. We seriously didn't think our girl had adrenal as she is a smaller breed but wanted to be sure. And there you go: That's what she had. Little bugger had to be different. :)

We asked that a specialist be found who would operate, we went ahead (and my god that was a terrible time), Button was in hospital for 7 days and now a few months later is almost recovered. The surgeon removed her adrenal gland completely, the vet supplemented her cortisol synthetically, gradually weaning her off over several months.

Today she is absolutely Cushings free. All the symptoms are reversing.

The healing power and fighting spirit of this tiny little 13y.o. dog never ceases to amaze me. Try to stay positive and continue things as normal. The oldies thrive on routine and calm environments so I feel it makes a difference if they see you take it all in your stride. ;) (even though I almost had a breakdown LOL). Homeopathic 'supportive' treatments for you both in a stressful time won't hurt either.

Hope that helps. I'm no professional so I hope what I wrote made sense. :D Good luck with your girl.

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Oh thank you powerlegs for the info, but also for the positive message. I'm so pleased Button is Cushings free - or getting there! Yes the fighting spirit is amazing isn't it. Chloe went through 2 traumatic and very painful operations on her knees and total change to her lifestyle and routine. But she took it in her stride and her courage astounded me everyday... and still does.

I can only pray that Chloe has the same good results as Button. I am taking her to the very best specialists that I know of (the same ones she went to for her knee ops, but obviously in a different speciality field) and at the very least I feel good that she will have the very best care. At this moment, I feel it's all I can do.

Most of the time she looks happy, but I know she is not right and it weighs on me like a tonne. My mum especially is very down, so I try to keep the scary stuff away from her and keep her hopes up as well.

I hope we can all be brave and get her through the next few scary months.

Your stories have given me some hope... thank you so much.

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:) Trusting your vet is a biggie. I'm so glad you have that.

&Remember to keep updating here as she progresses. It's such a rollercoaster when any loved one is ill and you will be frightened at times. It's just that Cushings is so intangible. For us bystanders, it feels like trying to pin down smoke. Everything is uncertain and personally, I had never once considered Cushings in my vision of Button's ageing, it seemed so awful and random.

But there is hope. Dogmad manages her Dixie's Cushings day-to-day, supplemented with good food and lots of cuddles :D and my Button-girl is still with us and still running the house ;) until time brings another challenge.

Chin up Kelly_Louise :) Things will get better. Hugs to you, your gal and your mum.

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I had a mini poodle with Cushing's disease and he lived out the whole of his life. He was diagnosed at 12.5yrs and put on the chemo drug Lysodren. Later we moved him on to the newer drug Trilostane. Neither drug are as terrible as you might think, although care in cutting pills is recommended. Here is a great site for information and support:

http://caninecushings.net/

If you would like email assistance send me a message to [email protected]. I support another gal over in Melbourne too. I have a fair bit of literature in Word which I would be happy to share if you like.

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Oh that is lovely, you guys are the absolute best. It was my birthday yesterday and I ended it with tears as Chloe had wet her bed a little and was so upset about it, even though we tried to tell her it was okay and give her lots of hugs and cuddles.

She has an appt at 9am tomorrow morning for an initial consult with the Specialist then onto all the testing, they may keep her over, not sure... but will certainly keep you all updated.

It's quite overwhelming, but so far your support has been very great and I'm feeling much stronger and positive than the initial diagnosis. Loraine, although I know it's probably not, you make it sound easy! Thank you for your uplifting story it's lifted my spirits! I certainly would like to keep in touch and have joined quite a few other Cushings sites and groups to get as much info etc as possible. I think it's key to being able to make the right decisions... whether they be tough ones or not.

Thanks guys, I really appreciate it. I'm sure tomorrow will be a different story, especially if I have to leave her there (there will be MANY tears!).

Keep fingers crossed for my girl that a miracle will happen!

And thanks again!

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PS. Im really sorry for being such a sook! I think they will need to shoot me up with some sedation!

Hey you are entitled to be a sook when faced with something like this (((HUGS))).

It is relatively rare, usually it is pituitary based. Once you get into the swing of meds it is easier. I also have a girlfriend who had Cushing's and is now Addisonion, and that gave me a better understanding as to how my pooch was actually feeling :eek: The most important thing is to make sure you have a vet who can not only diagnose, but treat the problem. I ended up having to find a new vet as my long-time family vet had no idea about the medication protocols, he hated that I surfed the net for information (and ended up knowing better than him what to do with the meds). I phoned around with a list of questions until I found a vet who understood the disease and was prepared to let me be involved. When we moved my boy onto Trilostane I imported it as it was only available in Australia thru vet Uni places - my vet was great, and enjoyed being at the 'leading edge' of Trilostane in Perth :laugh:

ETA my boy lived to 15.5yrs and was sent to the Bridge with a third time kidney failure, which was not related to his Cushing's.

Edited by Loraine
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Yes I think having a good trustworthy vet is critical. I have actually moved Chloe, which didn't make her normal vet very happy. I understand they have the diagnostic equipment to be able to do the testing etc, but in my heart I just don't feel good having her there. She always has to see a different vet and we seem to be always starting from scratch and contradicting what the previous vet said. And it's always... wait and see. Well I don't want to wait anymore and I want Chloe to go to someone who is a specialist in this field. I feel very confident that the specialist will be able to help her and I trust them with her life (which is difficult for me to do - for ALL of us to do I suppose!). And at the moment, I feel it's the only thing I can do for her. It is a referral only hospital, and luckily even without one they have agreed to take on her case because she is a prior patient.

I do want to ask though... between the diagnosis and getting the meds just right (I am assuming with a bit of trial and error), how traumatic is it for our little ones? Are they in pain or get really sick, or is it just the stress of having tests etc?

And another, less relevant one, what is the 'round about' costs of these medications on an ongoing basis to manage the symptoms?

Although I am dreading tomorrow, I'm also looking forward to it. Doing SOMETHING for her, makes me feel better.

Loraine, I can only wish at this stage that Chloe will also make it to 15yo like your boy did. To me, that would be an absolute miracle... what with her leg ops and now this. It would be a blessing. But even if I can get her through another 3 + years without too much drama, I will be happy that she has had a full and happy life. I'll certainly be aiming for 15 too though!

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I do want to ask though... between the diagnosis and getting the meds just right (I am assuming with a bit of trial and error), how traumatic is it for our little ones? Are they in pain or get really sick, or is it just the stress of having tests etc?

It depends on which med your specialist wants to use - with Lysodren their is what is called a 'loading' period - give the med every day for between 3 and 10 days until the dog is 'loaded'. I have loading insutructions if you email me your addy I can attach them to an email. Approximately every three months (once your loading is complete and tested) your pooch will need to have a blood draw for an ACTH test to make sure the cortisol levels are in the right place. I do not think that the pooches are in any pain during the med giving and the tests.

And another, less relevant one, what is the 'round about' costs of these medications on an ongoing basis to manage the symptoms?

As it is three years since my boy went the the Bridge I am not up to date with the current cost of meds, it also depends on the size of the dog as to the amount of the med. My boy was 5kilos and his maintenance dose of Lysodren was 1/4 tab every third day, and at that time the med was about $11.00 per tablet. Then there is the ongoing cost of the three monthly testing and that will depend on what your vet charges. Ask up front what the expected costs will be - I say this as I guess three years of treatment for my boy cost about $3000.00 all up

Also note that when the cortisol is reduced (dog is over producing at the moment) things like arthritis and reumy will be worse so pain killers may also be needed. Excess cortisol masks aches and pains.[/b]

Although I am dreading tomorrow, I'm also looking forward to it. Doing SOMETHING for her, makes me feel better.

Loraine, I can only wish at this stage that Chloe will also make it to 15yo like your boy did. To me, that would be an absolute miracle... what with her leg ops and now this. It would be a blessing. But even if I can get her through another 3 + years without too much drama, I will be happy that she has had a full and happy life. I'll certainly be aiming for 15 too though!

On the website addy I gave you we have one dog who lived to be 19! Many dogs on that site have been there for up to 10 years and still going strong. Vets will often tell you that this disease shortens the life span, and that you can only expect to get another couple of years life from the dog once diagnosed - this is a bunch of rubbish, as most dogs life out their normal lifespan, depending on breed.

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Loraine you are a wealth of info. :)

Kelly_louise, how did you go today?

No, I don't think the diagnostic stuff is painful for them, just annoying. Button always views it as a huge inconvenience and great insult to have to skip a meal for any reason. :rofl::laugh:

She did bruise fairly badly when bloods were taken. Distressing for me but not so much for her.

And as she deteriorated very rapidly before surgery she could only digest baby food. Poor girl. She basically drank, slept and peed or wandered about looking lost and anxious. So, in the scheme of things, meds and tests are the less of two evils if it means a healthier old age.

You will get the odd pee accident until things are sorted. :) It's one of those Cushings things.

Edited by Powerlegs
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Thanks for the responses guys, it's really comforting. Sorry I couldn't update yesterday, I was like a chook with its head off and didnt have my laptop at home. Loraine, you are right our normal vet indicated it could cause a shorter life span and cost alot more than we were advised yesterday. However, the specialist said once it is controlled there is no reason she should not kick on for many years. He had a laugh at some of the notes written by Chloe's normal vet (and the lack of content) and was really good in calming us down and reassuring us. Powerlegs, thanks for caring and asking about her. That's sweet. If the odd accident is the price to pay for getting her better, she can pee everywhere! I'm glad it's not all so terrifying as what I imagined!

She had her ultrasound yesterday, and it showed that she had no abnormalities and that her adrenal glands, kidneys and liver look fine. It was such a relief to hear that, and the vet was very optimistic! She has gone in today for the suppression test, so it will be a big day for her. The vet is absolutely wonderful and took such pains to make sure we understood everything and asked us so many questions about her, and about the things WE notice at home rather than relying on the vets notes solely. Altho I cried to leave her, I now feel so confident she is in great hands.

He said that it's possible there may be another cause, but is fairly sure it's Cushings. If so, she will go onto Trilostane to manage it. So I will now be googling all day I can see!

Poor bugger was so frantic when I picked her up yesterday. Of course she had no belly hair, but she sat at my feet and cried until it was time to go home. Even when I got up and moved to the other side of the room to have a look at her scans, she stuck to my leg and never moved in case I got away! God love her...

So hopefully by this afternoon we will have definitive results and will know the direction we need to take to get her better. I was just so relieved that otherwise the vet was really, really happy with her health, and said that Cushings could possibly explain why she hasn't been able to shift any weight, no matter how hard we have tried (and it's been a loooooong ongoing battle to try and get her weight down). It's always scary when having tests done that something unexpected will turn up, and to know that everything (other than this Cushings problem) is all good is heartening. Hopefully that will help her in her recovery.

Good news so far, fingers crossed it continues! She was really flat last night and this morning, and it will be a long day for her today so I can't imagine she will be in top form when she gets home. Lots of cuddles should help that!

Thanks for all your personal experiences, it's helped enormously to take away my fear. I will update later on when I hear something.

Take care all.

Edited by Kelly_Louise
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Kelly you have found one really good specialist. He is prepared to work with you whihc is fantastic. My final vet used to say that I knew my dog and if I noticed signs and things then they were important to him, to assist in the treatment of my boy :rolleyes:

Trilostane is the chemical name for a medication that is being used successfully to treat Canine Cushing's Disease. Worldwide, the only currently licensed veterinary version of trilostane is manufactured in the U.K. by the Dechra Group under the brand name of "Vetoryl." Vetoryl is now widely prescribed in the U.K. and Europe, and can be obtained directly by U.S. residents (limited amount for personal use only) through a U.K. internet pharmacy named Masters Marketing (http://www.mastersmarketing.com). Since Vetoryl (trilostane) has not yet received FDA approval, please see Reply #4 below for the FDA's current policy regarding the importation of unapproved drugs for personal use.

Here is a link to Dechra's prescribing brochure, with lots of useful treatment and dosing information (special thanks to Jenny ["BestBuddy"] for providing this brochure!): Vetoryl Brochure.

Please make special note of the Treatment Flow Chart on the last page of the brochure -- it provides recently revised guidelines for treatment goals and dosing changes. In order to convert lab values from European units (nmol/l) to U.S. units (ug/dl), divide the values reported on the chart by 27.59.

Also, be aware of the recommended protocol for changing from mitotane (Lysodren) to Vetoryl: "Experience in the field suggests that the mitotane therapy should be stopped for at least a month (or until signs of hyperadrenocorticism start to recur) and treatment of Vetoryl should not be started until the post-ACTH serum cortisol is >400 nmol/l [14.5 ug/dl]. Close monitoring of adrenal function is advised as these dogs may be more susceptable to the effects of trilostane."

Because the Vetoryl Brochure is in the form of a pdf file, you'll need Adobe Acrobat reader on your computer to view it. Here is a free version of Adobe Reader to download if you don't already have it on your computer:

www.adobe.com/products/ac...dstep.html

However, if you still have difficulty downloading or viewing this Vetoryl Brochure, there are additional resources listed in the following posts that contain similar treatment and dosing information, so just keep scrolling down to find them

If you go here http://caninecushings.net/forums/showthread.php?t=180

You will find heaps of info from people dosing with Trilostane.

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Thanks Loraine! Can't wait to get my laptop back so I can look in depth at these sites. I'm sure they will be very helpful.

STILL no results yet from the suppression test. We were told either today or on Monday. I'm sort of glad to give Chloe a break from the stress of the vets for a couple days though. She cried and cried when we picked her up last night, didn't stop till we were home for about 20 minutes or so and she got some food in her bald belly :)

But, she's hanging in there... big toughie.

Attached are a few pics of my bald belly girl after her ultrasound. She's wearing the pretty new scarf that the Animal Hospital gave her for being such a good girl!

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post-8152-1206675769_thumb.jpg

post-8152-1206675777_thumb.jpg

Edited by Kelly_Louise
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Poor bare belly Chloe :) Once this big set of tests are over, the type of testing lessens (I am sure that the dogs are pleased about that :) ) As it appears that her adrenals are normal it sounds like you will be going the pituitary route. After the loading and once on maintenance you should start to see a lessening in the drinking and eating (if she has been ravenous, my boy was) and therefore a lessening in the peeing. Also she is probably suffering some muscle weakness in the legs and that too will improve. This test is usually the longest as far as waiting goes, but it all comes good. Please don't hesitate to contact me if you need any help (send me a PM with your phone number and I can call you if you need a chat, as that is sometimes better than emailing)

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