Baby, 12 y/o Border Collie mix, What to expect beyond visible symptoms?

[BabyLove]

Our dog, Baby, a Border Collie mix, and approximately 12-years-old, was officially diagnosed about a year ago. Our vet has been suspecting this much longer based on some of the results after routine blood work around 8 or 9 years old, but she was exhibiting no symptoms at that time. As we began to deal with "nuisance behaviors," as our vet termed it, we had the blood work done that confirrmed the diagnosis. However, because of her larger size and related immense cost, we could not afford the treatment that was available. So, my question now is, does anyone know how to explain what cushings is or does to a dog's body beyond the behaviors/symptoms of excessive thirst, bloated abdomen and hair loss? I am worried that she is beginning to suffer, or is at least very uncomfortable, but she is still quite capable of moving around. And because she is showing no physical mobility problems my husband and children (ages 7 and 15) refuse to believe anything is really wrong with her- in their eyes, she just drinks and urinates alot. I don't understand Cushings very well myself and would appreciate any simplified information, support, or input on how to maximize her quality of life, because, of course, we love all her very much and I can't bear to see her deteriorating right before our eyes. Thank you all in advance. I'm so glad this forum is available

[Franklin'sMum]

Hi and welcome to you and Baby
Cushings syndrome is a condition where the body produces too much cortisol (sometimes sex hormones are involved). The effect of the excess cortisol is that the pups internal organs work harder than they need to in a non cush-pup. Quite often the liver enlarges with the additional work it has to do. In time (a long time. Cushings is a very slow progressing disease) it places stress on the other internal organs.
Cushpups are prone to a number of secondary conditions- pancreatitis,diabetes,kidney disease,heart disease to name a few). Again- this is not an overnight thing. A treated cush pup can often live out their natural life span.
Are the symptoms you mentioned (drinking,peeing,fat belly and hair loss) the only symptoms Baby is showing? We have some members who are quite skilled at interpreting test results, and if you could post the abnormal results with reference ranges for the lab it would really be helpful. And the actual diagnostic tests/results performed.
Welcome again, and we'll help you walk this road
Jane, Franklin and Bailey xxx

[mytil]

I wanted to welcome you also to our site.


...And because she is showing no physical mobility problems my husband and children (ages 7 and 15) refuse to believe anything is really wrong with her- in their eyes, she just drinks and urinates alot.

Just because she is not exhibiting mobility problems does not mean there are things happening internally one cannot see. :(

Please take a look at these two links
http://www.k9cushings.com/forum/showthread.php?t=212 (for finding sources that could assist in the medical expenses).

http://www.k9cushings.com/forum/showthread.php?t=195 (for understanding what untreated Cushing's can do)

Is excessive drinking and urinating her only symptoms (as Jane mentioned also)? And IMO they are not "nuisance behaviour", they are real indications something is happening internally. It could be Cushing's, could be diabetes, could be a thyroid problem, could be the start of kidney issues. . . .so I do not mean to sound difficult here, but hopefully your vet is not just glossing these over as just nuisances.

Please stay with us.
Terry

[BabyLove]

I personally never thought of these behaviors as just "nuisances." The vet said that as a way to draw a difference between those things that were happening early in the disease that we could see vs. the internal problems that were going on and would continue to escalate, especially if left untreated. He was indicating the very thing you said- that her body is acting on impulses caused by the disease and it's effect on her system. BTW- I wondered about it, too, when he used that phrase, I just assumed it was a medical/shorthand way of referring to behaviors like foraging through trash, stealing food, peeing in the house, etc... He is not glossing over her real problems at all. In fact, he explained it to me after the test results were in by making a personal phone call to try an interpret all the results and explain our options. That was more than a year ago, though. My problem with that is that I'm the only one that takes her to the vet and has talked to him about cushings and because I cannot relate it well to my family all they see is these outward symptoms. I can tell she is starting to show other signs of distress, if not true suffering at this point. I need help in easing her discomfort, if possible, and helping to educate my family in the problems that cushings progresses into beyond just what you can see- thank you Franklin'sMum, and mytil for that amazing medical complications link!

Although her test results are more than a year old at this point, I will try to get them from the vet today and post them for any help I can get in interpreting. But currently I can tell you she also has hypothyroidism that we've been treating for several years. She is drinking 3+ gallons of water in a 24 hr. period, pacing between naps, and panting out of nowhere, like she's just come in from a long walk. Her belly is distended, she has significant hair loss all around her neck and on her haunches, and I've noticed a small tumorish kind of growth between her shoulder blades. She scavenages around the house eating tissues, etc... out of trash cans behind doors that have forgotten to be closed (we actually have 3 kids so the best laid plans are often foiled) or looking for anything else small and soft like baby socks or stuffed animals, even a whole bib at one point last week; and then she consumes them whole, and either vomits them or deficates them if they can fit through her system- we've found some very odd things in the backyard!! I would also say she has at least two accidents per day. I am a stay at home mom so this is happening while I'm at home, just in another room- she beginning to get to the point where she can't hold it long enough to get outside as it's happens while she's walking just to get there. These are all things we have been living with and adjusting to. That's what I meant when I said the kids and my husband don't really "think"- read as "understand"- that there is more to this disease that these problem they can see. We love her no matter, but I, especially, from being the one that has talked to the vet when it was diagnosed, realize there's more going on than meets the eye and it's hard watching her progress like this thinking about, but not truly understanding, what's going on with her internal organs that's causing all these things to happen.

Was I wrong to think others may have had to leave cushings untreated? I first searched for "untreated cushings" and came up with no posts, so I was sort of hesitant to post anything in the fear that I am the only one out there that loves my animal so dearly, but cannot afford to treat her. Our vet told us he's never had a dog of this size on treatment because of the higher cost for a bigger animal. I was hopeful that those of you experienced with this could share if there are any known comfort measures that could ease her discomfort. Thank you again in advance for your help.

[zoesmom]

Hi -

Welcome. So sorry for the situation that you and Baby find yourselves in. Cushings is a very serious disease with very serious effects. Just have a minute right now so one quick question - how much does Baby weigh as you say she's a big girl. Thanks. Do check out the link on financial resources for vet care. It's a long one. Sue

[mytil]

Hi again,

When you call for the test results, I would have another talk with my vet to see if the meds need to be adjusted for her hypothyroidism and further about the symptoms you mentioned above all of which point towards Cushing's. Here is another link from our Resources section - http://www.k9cushings.com/forum/showthread.php?t=2256 on thyroid problems. Ask him about the exact costs involved ---

Here is another link - see especially the kateconnick link http://www.k9cushings.com/forum/showthread.php?t=180 - this will explain further about Cushing's and the various tests.

It is not our purpose here to chastise people for their decisions, (we do not walk in their shoes and a lot of times do not know all the personal circumstances) - but to help them and their pups through this as best as possible.

Keep us posted
Terry

[jrepac]

Sorry to hear about your situation; not treating is not the best option; even some basic treatment will improve the pet's quality of life. Although the brand name meds are expensive (like Vetoryl), you can usually get generic trilostane via compounding if I am not mistaken (Diamondback does this); I also think this is true for Lysodren (mitotaine) and definitely for Anipryl (selegiline) and Ketoconozole...

Assuming your dog is about 40lbs, generic selegiline would run about $70-80 a month and might help w/symptom control (I can speak to the cost of this drug, since I purchase it regularly). And you do not have to schedule follow up testing w/this treatment...it either works or does not (response varies).

But, do give it some thought

[lulusmom]

Hi and welcome to the forum.

I'm so sorry that you alone have had to shoulder the worry and concern for Baby. If Baby was definitively diagnosed a year ago, I am not surprised that you are seeing the natural progression of the disease. Drinking 3+ gallons of water a day, pacing between naps, panting for no apparent reason, a distended belly and hair loss are all symptoms of cushing's, and they are not normal, so I am a bit surprised that you are the only one in the household that's noticing these overt changes in behavior and appearance.

If your vet did a thorough job of diagnosing Baby, the biggest expense is behind you. I have two cushdogs so I know who expensive testing is. Was your decision not to treat based on the cost of medicine? If so, there are ways to get a much better deal on meds through online and compounding pharmacies. You have to monitor treatment via bloodwork called an acth stimulation test but you can ask your vet if there is any way he can help you with the cost of this test.

Unfortunately, there are few effective drugs for this disease and aside from the Anipryl Jeff has mentioned, I don't know of any alternatives. Of one thing I am certain and that is that you are not the only pet owner that has opted not to treat; however, if cost is the primary reason for your decision, there are entities that may be able to help with Baby's treatment. Terry gave you a link to these financial resources so why not start contacting them by phone and email? You have nothing to lose and Baby has everything to gain if you meet with success in finding financial assistance.

Glynda

[Franklin'sMum]

Hi again,
About the panting- cushpups often have an enlarged liver due to the constant work it's doing, which in turn compresses the lungs, causing panting. Another idea that you might want to discuss with your vet is using melatonin. It can sometimes help with lowering cortisol, although not usually to the extent of the main drugs used. It can be bought from health food stores. If your vet thinks it's worth trying, you want regular melatonin, not slow release.
Jane, Franklin and Bailey xxx

[BabyLove]

First of all, I want to again clarify that the symptoms are obvious to everyone in our family...there's no denying that we're dealing with cushings. It's just that our 15 year old and her father don't want to accept that this disease is anything that we or she can't continue to live with...They feel like these symptoms are not affecting her quality of life and and we just have to be more persistant about letting her out frequently and filling up her water when it's empty. Hair loss and bloated abdomen aren't quality of life issues that are making her uncomfortable, in their opinion, and partly it's just plain denial on their part in accepting what inevitably lies ahead. Everyone loves her dearly and wants to believe her immediate problems with her cushings symptoms are not making her suffer- this is where our opinions differ.

Her diagnosis was made last September, but our vet had been suggesting this based on elevated alk. phos. levels since '07. In September '09 the symptoms were showing and her lab values on the blood test that was done to make the diagnosis are as follows: Cortisol- 3.3, after 4hrs post deximeth it was 5.4 and after 8 hours it was 5.1. Her alk.phos. was 1,867 at that time. The prelim test we had done cost around $250 and we were told the treatment would run approx. $25/day for the first 6 weeks before another test would be repeated to see if the dosage could be reduced, and this type of testing was something that would need to be repeated on a regular basis of every 6-8 weeks. Baby is about 75 pounds, and at the time, being 11-years-old, the vet was unsure of how she would even respond to treatment. However, in light of the links that have been provided about reduced treatment costs, or considering other meds that could improve quality of life, we may reconsider, but she is pretty far progressed at this point, and just today, the vet that returned my call (not our regular one) suggested cushings can also lead to neurologic problems because of the likely brain tumor that is causing it. That was something I was unaware of and unprepared to hear. I appreciate all your help and will definately show my husband the wonderful links you have shared. Thank you.

[Roxee's Dad]

Hi and a belated welcome from me. :)

Just wanted to give you a little input from a person that didn't treat cushing's when it was first diagnosed. :( Some years ago my Roxee was DX'd with Cushing's, we were uneducated in this disease and did not find this forum until some years later, probably too late for my little girl.

She had the excessive hunger, PU and PD, stealing food etc... we loved her and dealt with whatever cushing's threw at us. We watched as she just cried for food, imagine feeling hungry 24/7. The panting was unbearable, many times I would take her in the other room and try to sleep with her on the cool floor so my wife would be able to get some sleep.

I watched as due to muscle weakness she could no longer go up and down the steps from the doggy door, built a ramp which worked for a while until she no longer had the strength to go up the ramp. She eventually went blind and deaf. For the last year I carried her outside to do her business, well, I carried her everywhere.

She was on Trilo for tha last 6 months of her life, her hair grew back, her appetite and water intake returned to normal. Her panting was almost non existent. In the end, she was laid to rest because of neurological issues, most probably the PDH tumor had grown as she was not able to control her hind end anymore and had trouble lifting her front paws.

I regret not giving her the quality of life she could have had in the last year or 2 of her life. Would it have stopped the neurological issues? I don't know but watching my active little girl deteriorate just broke my heart.

Please believe me that I am not trying to instill any guilt feelings, just want your family to know what to expect to see happen, not to mention the internal damage that will go unseen. I wish I had found this wonderful group of people years before to give me the knowledge and confidence to treat my Roxee when she was first diagnosed.

Lastly..The vet did want to charge me a high price for the medication, :eek: :mad: but as others have mentioned, you can get an RX from your vet and get it on line at a much lower cost. :)

Please don't hesitate to ask any questions you may have. We are here for you and Baby. :)

[labblab]

Hello, and welcome from me, too.

I just wanted to add a couple more thoughts as a result of this additional information that you have given us. Baby's LDDS (low dex) test results are indeed consistent with Cushing's. Sometimes the pattern of the test results can point with a fair degree of likelikhood towards the pituitary form of the disease. However, Baby's results could be associated with either form of Cushing's -- that arising from a small tumor in the pituitary gland, or instead a tumor of the adrenal gland/s. Additional testing would be needed to make that determination, but in Baby's case that information may not make a difference in your treatment decision. Surgical removal of adrenal tumors can offer a complete cure. But surgery of this type is a very expensive and very serious undertaking. If surgery is not an option for a dog or an owner, then one of the same two main medications are generally considered for treatment of either adrenal or pitituitary tumors: either trilostane (brandname is Vetoryl) or mitotane (brandname is Lysodren). For most dogs suffering from pituitary tumors, the tumor remains extremely small. However, as the new vet has said, in some instances, the tumor can expand and place pressure on the brain which results in neurological problems. However, this is the exception rather than the rule. So just because a dog suffers from pituitary Cushing's, this does not mean that neurological problems are either inevitable or likely.

As far as costs, I can speak a bit more about the treatment cost if you were to opt for trilostane. Current protocols recommend that dogs be started on daily doses ranging from approx. 1 mg/kg (which works out to about 1/2 mg./lb) to 1 mg/lb. As has been mentioned above, it is possible to purchase compounded versions of trilostane that can be significantly less expensive than the brandname form. But even with the most expensive scenario (starting Baby on brandname Vetoryl), you could purchase a monthly supply of 70 mg. from internet pharmacies at a cost of approx. $110-120 per month (this would be by buying one box of 60 mg. capsules and one box of 10 mg. capsules). I realize this is still a lot of money, and it is entirely possible that Baby might end up needing to take a bigger dose of the medicine further down the road. But the starting dose is far less than the $25/day cost that was quoted to you earlier, and I just wanted you to be aware of that.

As far as testing costs, the usual testing protocol for trilostane is to test after the first two weeks of treatment (an ACTH test costing approx. $350, although this can vary depending upon the vet), and then an additional test at the 30-day mark. If all goes well, additional tests are then spaced out at 3-month intervals. However, if dosage changes are needed (which can frequently be the case), then additional tests can be required as well. Again, I don't want to mislead you regarding the testing costs -- they definitely involve expense. But once again, the usual protocol for trilostane does not involve as frequent ongoing testing as you were initially led to believe.

Here's a link to our resource forum that will supply you with a lot more basic information about trilostane:

http://www.k9cushings.com/forum/showthread.php?t=185

And I'm hoping that other members will also be by to give you some more realistic expectations about the cost of Lysodren treatment. It may turn out to be the case that the treatment and monitoring costs of either of these two medications may be more of a burden than your family can shoulder. But I at least wanted you to have a truer picture of the costs upon which to base your decision. Either way, we're here to help!

Marianne

[zoesmom]

Hi again -

I see you've been getting some good advice. For sure, your family members need to read the link on what happens to a dog with untreated cushings. If at all possible, treatment should be reconsidered. It sounds to me like the tx costs your vet mentioned were a bit inflated. My Zoe was 80 lbs and while it's true the medicine costs increase relative to the dog's size, there are many options for getting the medicine more cheaply than thru the vets office. Perhaps he was quoting you his price for the meds. You could try the anipryl mentioned by jrepac because, as noted, it would not require the monitoring with acth tests. However, it does only work in about 20% of dogs and with Baby's symptoms being so advanced, it might require one of the other two drugs - lysdren or trilostane. Lysodren would probably be cheaper as it's given for a 3 - 10 days or so on a daily basis (called loading) and then only has to be given on a weekly basis. Trilostane - which must be given daily - was what we used for Zoe, and it ran about $125/month. BUT, she required an exceptionally large dose, even for her size (180 mg, twice a day) and I only recall maybe one or two other dogs here who required that much. Chances are, Baby might only need 60 or 120 mg capsules (and possibly only once a day) so that cost could be considerably less. I ordered compounded trilostane from a place in AZ called pethealthpharmacy.com - it was one of the cheapest sources I could find. The price for 30 caps (a month supply) of 60 mg was about $49 and for 120 mg was about $65. I can double check on that but what your vet was saying as far as cost sounds way off. The lysodren can also be ordered online and our members could steer you to the cheapest places for that, too.

As for neurological problems, those may only occur if her tumor is pituitary and grows a bit too large (called macroadenoma). But that only happens in a very small % of cases. But the other side effects of untreated cushings can be pretty unpleasant, and in time, life-threatening, regardless.

The other thing that I disagree with is the testing schedule for a dog on tx (vet said every 6-8 weeks?) On either lysodren or trilostane, there are usually two or three acth tests required in the first couple of months - to make sure the dose of medicine is right. After that, testing is only required every 3 months. And if all goes smoothly, that can probably be stretched out as time goes by - maybe to 4 months. For a few dogs who do extremely well, testing every six months might be adequate. There seems to be a wide variation in the cost of that acth monitoring test. But for a dog who is doing well, and has become established on the drug of choice, there are a couple ways to cut that cost, as well.

I know there are some here who have used some of the places listed for financial assistance with vet care. I think the most popular is Care Credit? If you decide to give tx a try, then definitely suggest shopping around for competitive drug prices - online is usually best. Your vet should be willing to write you an rx so you can get the best price as vet clinics are known for jacking up their med prices a lot.

Also, because your vet felt unsure of how Baby would respond to tx tells me that maybe he/she is not all that knowledgable in how to handle cushings and this makes me wonder if maybe your vet was overly discouraging about treating. Also, as mentioned, that six weeks time frame before repeating the test is WAY OFF, too. For Baby's sake, I'd urge you to look into the treatment options/costs/financial assistance programs and definitely read more of the information in our resource section. I'm concerned that your vet wasn't giving you a fair picture. If you have more questions after reading the links, fire away. Hugs to Baby. Sue

[jrepac]

Hi Again...I see folks are chiming in here, which I hope is helpful. I'm sure someone can offer up current lysodren pricing (I have not purchased it in many years). I do think your family should re-consider treatment...even if this has been going on for one year, Cushings is slow to progress and can respond to treatment, no question. Many of us have seen that, myself included--I was dealing w/UTIs, pee accidents, skin problems, barking in the middle of the night for food, etc., etc. Treatment has helped a lot and we are going on 2 years now (my dog will be 14 next year, god bless).

Someone here mentioned melatonin tablets, which are sometimes recommended; along w/lignans, they may offer some relief. Melatonin is pretty inexpensive...3mg tabs can easily be found in your local drug store for a reasonable price. I give Anipryl (selegiline) in tandem w/melatonin, lignans and a few other supplements and have been pleased with the results. Supposedly, up to 70% of dogs show improved response in symptoms on Anipryl, but by most accounts only 20-25% really show significant improvements; I suppose I am one of the lucky few. Which is a blessing as my last dog was also a cushpup and we did not have a good outcome (but this was a very long time ago).

But, please do give it some thought.

Best of Luck

Jeff & Mandy (the Aussie in the photo)

[apollo6]

Welcome
I have attached a simple explanation of cushing showing you the progression of it and the improvement after treatment. Show this to your family.
first you figure which one it is and only then do you decide on treatment.
My Apollo has had cushing probably for over 1-2 years. I noticed more and more symptoms and in September 2009 I finally got the confirmation that he has cushing. It took me until June 2010 to start him on treatment, and I have notice positive results, the drinking is reduced, he is getting back some of his beautiful coat, his elevated reading have gone done. It is a very difficult disease to understand. For myself, it was worth going forward with treatment. Apollo will be 12 in October.
http://www.kateconnick.com/library/cushingsdisease.html
Sonja and Apollo

[zoesmom]

Hi Baby's Mom -

I sent you a privatge message, but since you're new to the forum, just wanted to make sure you saw it and read it. Check in the upper right corner, where it says Welcome, BabyLove and Private Messages and click on it. Sue (zoesmom) and now Cooky's mom

[bgdavis]

Hi,

I'm an 'old' member of this forum and no longer have my diabetic/Cushings' dog, Crissy Ann. She passed away at the age of 13 in 2009. However, I would like you to see the difference treatment with Lysodren made in just 90 days. If you would like to read about Crissy's difficult road (2 years) to diagnosis and treatment please follow the link to her story on the sister, K9Diabetes site: http://www.k9diabetes.com/forum/showthread.php?t=83

Here's a link to her before and after pictures:http://www.k9cushings.com/forum/album.php?albumid=116

Bonnie and Angel Criss Ann

[Squirt's Mom]

Hi and welcome to you and Baby! :)

I once had a solid white, blue-eyed, deaf cat named Baby and am now taking care of a 30+ yr old mare named Baby! And it seems no matter what the real name is, I end up calling everything "baby" quite often. ;):p

A few years ago we had a member who chose not to treat due to her babies age. Hotty had some difficulties but nothing that wasn't expected, and in the end she began to act as if the pituitary tumor was growing, which isn't the norm. But it seems like Hotty was with us for more than a year and her mom didn't treat at all other than to address the symptoms as best she could. Hotty was very much loved by her mom and by many of us here. So, yes, we have had members who for whatever reason did not get treatment for their baby.

I know it must seem like everyone is hammering you to get treatment but that is because we are dog focused. ;):) If we could, we would see to it that every dog affected with this condition received treatment! But none of us are wealthy, either, and many struggle just as you. Some of us are able to do whatever is needed whenever the need arises and are able to go to extreme lengths for our babies. Others do the best we can with what we have. But we all have one thing in common - we love our babies just as you and your family love Baby.

I don't want you to feel that if you don't treat you don't belong here....you do. For Baby and for others. We don't currently have anyone active on the board, that I can think of, who has chosen not to treat so there may not be much first hand knowledge we can offer there. However, we may be able to help you with other suggestions that could help you and Baby cope better.

Also, you are not the only person out there who loves their baby yet cannot treat. So your experience will help others who face the same situation as they, too, come here. We are continuously growing and the more experience we have to offer as a group, the stronger we will be and the more babies we can help in a variety of ways.

I hope you will let us hear from you soon and tell us how Baby is doing.

Keep your chin up!
Hugs,
Leslie and the girls :D - always

[Casey's Mom]

Hi and welcome to our group.

I am one of the forum members using Lysodren. When my girl was diagnosed Trilostane was not available in Canada and when it became available a month later I didn't want to switch as my girl is doing well on it.

I pay approximately $60 every two months for her supply - she is a 40 lb. dog. From what my vet told me Lysodren is considerably less expensive and I believe there is less testing in the beginning of treatment.

Hugs to you,