Barring any complications, with the care, attention, and knowledge you bring to Bear's life I wouldn't worry one teeny bit about a shortened lifespan.
Barring any complications, with the care, attention, and knowledge you bring to Bear's life I wouldn't worry one teeny bit about a shortened lifespan.
"May you know that absence is full of tender presence and that nothing is ever lost or forgotten." John O'Donahue, "Eternal Echoes"
Death is not a changing of worlds as most imagine, as much as the walls of this world infinitely expanding.
Hello and welcome from me too.
My molly was one of the ones that also tested negative on the LDDS and positive on the ACTH. In fact, her liver enzymes where going up and they kept checking for cushing with the LDDS and every time it was negative. I think there were 4 or 5 LDDS in total over the years. So months is pretty good to be able to get to a diagnosis. I went years. During that time she did pretty good over all, with no symptoms other than the liver enzymes to go by. We too did the denamarin for the liver and she remained on that for the rest of her life.
She did fine on the vetroyl once started. Her coat did get thin and more coarse and for us, that never really rebounded.
It was kidney failure that finally got her in the end, her cortisol remained sort of bouncy, with us adjusting doses as needed based on follow up ACTH.
Once her creatinine and calcium and BUN, SDMA all started going on, that became our focus rather than the cushings.
We have had dogs on the forum be on vetroyl for a very long time. Just off the top of my head I want to say one was treated for 8 years.
Welcome again!
Sharlene and the late great diva - Molly muffin (always missed and never forgotten)
Thank you Squirt's mom. I'm definitely trying to do what I can.
Molly Muffin, It's so crazy when our pets won't test positive with LDDS. I wonder why that is? I need to do more research and talk with Bear's specialist.
Wow, treatment for 8 years on vetoryl? That's amazing and wonderful to hear.
And I'm so sorry about your little one. Kidney disease is so difficult to go through. Thank you for the information and your personal experience. Again, I'm so sorry for your loss.
5% of dogs with cushings will test negative on the LDDS test. I don't know if it is because of location of a pituitary tumor or what, but that is my best guess at this point.
Sharlene and the late great diva - Molly muffin (always missed and never forgotten)
I'm just wondering if anyone else could weigh in on my pet's case. This has been quite the battle for the last 3 years with no relief of symptoms.
Okay, I will try to keep this short. Bear is a soon to be 9 yr old, MN, Mini Australian Shepherd (30lbs). He has been symptomatic for Cushing's since he was 5yr. His symptoms include increased hunger, panting and a coarse hair coat. Bear went untreated for approx 1 year due to both a negative LDDST and high dose dex test. He was borderline hypothyroid, so we went looking for answers to his hunger in that direction. After deciding to see a specialist, we did and ACTH stim and he came up positive for cushings. We did a CT scan to confirm that the tumor was in his pituitary gland. It was mildly enlarged on the upper end of normal.
So began our 2ish year Vetoryl plan. We started at 30 mg once a day (Sept 2016) and ended up at 75mg in the morning and 50 mg in the evening (December 2018). Always needing to increase every month or two because his numbers would normalize, and then they would go up again. Only in the last 6 months of using vetoryl was his Post ACTH stim within appropriate limits (between 1.8 and 3 microgram/dl) for more than 3 months. As you can imagine, that was a lot of boxes of vetoryl a month. Over $400 plus the bloodwork. This would have been fine, but literally at no time in these 2 years were his symptoms ever controlled. Sure the numbers looked good, but he is STARVING all the time and the panting and hair never changed. It's the hunger that is so hard to watch, it's unfair. This was a dog that would skip meals before Cushing's.
So fast forward to a new plan at the local University Teaching Hospital with a different specialist for another opinion/approach. Spoke with 6 doctors who wouldn't touch mitotane and then found one who not only would touch it, but was very comfortable with it. We did a vetoryl washout and did no meds for a couple weeks. Then began induction on Mitotane. 1/2 500mg Tablet twice a day for 4 days. Recheck of 1hr Post ACTH Cortisol: 8.91. Dr has a us start maintenance at 250mg twice a day 2 times a week. Recheck in a month: 17.4. Dr. has us increase again to 250mg twice a day now 3 times a week. Recheck in 6 weeks: 16 microgram/dl.
So this is where we are. He has exceeded the max amount of mitotane he can have per week for his weight (100mg/kg) (1,300mg is the max and he takes 1,500mg) and there is no symptom change and his numbers are high again and haven't come back down. The specialist is out of the office until Monday and the other doctor didn't want to make any changes just yet without her since Bear is taking above the max he can have a week - can't blame him. I'm sure his specialist will have a plan - she basically wrote the book on mitotane. Maybe potentially do another induction phase?
I'm just so hopeless for my boy at the moment - I could cry. It's as if we give him a dose, and then he becomes resistant. Just looking for others with a similar pet experience who have any ideas, or words of wisdom or comfort. I love this dog more than anything and just want to see him comfortable.
Hello Britt, and welcome back to you and Bear, although I'm surely sorry the last couple of years have been so challenging for you guys :-(. As you'll see, one of our staffers has merged your newest post into your original thread about Bear, and that will be a great help to us since, at that time, you had supplied a lot of helpful explanatory details about his diagnosis and initial treatment steps. I'm going to go ahead now and address a few of your current comments and and questions. As I always tell folks, please bear in mind that I am not a vet and have had no professional training or experience. However, my observations are based on the multitude of Cushing's journeys that have been shared with us on this forum throughout the years. So here goes...
As you know, you ended up on a high dose of dose of Vetoryl: 125 mg. daily total for a dog weighing 30 pounds. That is a lot of Vetoryl, and if his post-ACTH result was less than 3 ug/dL, he was actually in the lower end of the desired therapeutic range. Per Dechra, Vetoryl's manufacturer, a post-ACTH as high as around 9 ug/dL is acceptable as long as symptoms are being controlled effectively. If not, the desired post-ACTH drops down to a range of 1.45 - 5.4 ug/dL. So that high dose of Vetoryl was finally effectively lowering his cortisol to the "basement" of the desired range. And yet his hunger, panting, and poor coat persisted.So began our 2ish year Vetoryl plan. We started at 30 mg once a day (Sept 2016) and ended up at 75mg in the morning and 50 mg in the evening (December 2018). Always needing to increase every month or two because his numbers would normalize, and then they would go up again. Only in the last 6 months of using vetoryl was his Post ACTH stim within appropriate limits (between 1.8 and 3 microgram/dl) for more than 3 months.
Throughout our time here, we staffers have relied on the Lysodren treatment protocol outlined by Dr. Edward Feldman of UC Davis. Historically, it has been the classic approach that we've seen utilized by vets who prescribe Lysodren here in the U.S. Here's a link to his recommendations:So fast forward to a new plan at the local University Teaching Hospital with a different specialist for another opinion/approach. Spoke with 6 doctors who wouldn't touch mitotane and then found one who not only would touch it, but was very comfortable with it. We did a vetoryl washout and did no meds for a couple weeks. Then began induction on Mitotane. 1/2 500mg Tablet twice a day for 4 days. Recheck of 1hr Post ACTH Cortisol: 8.91. Dr has a us start maintenance at 250mg twice a day 2 times a week. Recheck in a month: 17.4. Dr. has us increase again to 250mg twice a day now 3 times a week. Recheck in 6 weeks: 16 microgram/dl.
https://www.k9cushings.com/forum/sho...d-related-tips
What I'm seeing is that your current specialist has departed from this classic protocol in the following ways. First, at a weight of 13.6 kg., this protocol with which we're familiar would have loaded Bear with a daily dose of approx. 680 mg. of Lysodren as opposed to only 500 mg. (following a formula of 50 mg. per kg. of weight per day). However, this difference probably only means that we might expect Bear to take a longer time to fully load than a dog taking a higher daily dose of the medication. Of greater significance is the fact that your vet switched Bear to the maintenance phase when his cortisol had only dropped to 8.91. Typically, the loading phase is not viewed as having been successfully completed until the post-ACTH drops to at least 5 ug/dL. So your vet shifted to the maintenance phase "early," but also at a higher dose than is typically used for maintenance. The Feldman protocol recommends that the weekly maintenance total generally approximates the daily dose that was required to lower the cortisol to that ideal range between 1 - 5 ug/dL, with variations based upon the speed/ease with which a dog originally loaded. Your vet's approach, however, has been to shift to maintenance early, and then give higher maintenance doses -- perhaps with the intention of still driving the cortisol down a bit further?? I really don't know. Unfortunately, that strategy has not seemed to work. So if you do reload, perhaps a different and more conventional approach would be better.
Another, not-so-cheery thought that occurs to me is that, during these past two years, Bear's pituitary tumor may have continued to enlarge into what is referred to as a macroadenoma. If so, that might explain his poor response to the medication and his lack of symptom relief. Unfortunately, that would take the expense of another CT or MRI of the head to visualize. A more benign -- and admittedly off-the-wall -- explanation might be that his excessive hunger may not be a result of Cushing's at all. If not, then lowering his cortisol to any level might not help. The reason why this even comes to my mind is because I've now owned three Labs, one of whom had Cushing's and two who have not. And in honestly, they ALL have had ravenous appetites. In terms of appetite, there truly has been no difference among the three. They will literally eat anything that is loose on the ground. Obviously that means any pieces of food that are dropped or are available to them in the house. I've tried to train them to obey the command "Gently" when a treat is offered by hand, and still my fingers often get snapped up in the process. Outside, they will gobble lawn clippings, clumps of dirt, any speck of garbage they can dart to and unearth, etc. etc. etc. So my point here, feeble as it may be, is just that if lowering Bear's cortisol clear down to <3 ug/dL did not curb his appetite, then perhaps something other than cortisol is fueling that particular issue. Of course, however, that has nothing to do with the poor coat and panting.
So these are my initial thoughts, and hopefully some other folks will soon chime in, too. But above all, we're eager to welcome you back and we'll continue to do our best to help you brain-storm about these ongoing challenges for sweet Bear.
Marianne
Hi, I am not very wordy, so I will just cut to the chase. You said that Bear was uncomfortable. How uncomfortable is he? What is he doing exactly to indicate this? Does he pace and have difficulty settling, particularly to sleep at night? Does he Press his head against you or other objects such as the couch? Are his back legs weak? Does he have difficulty getting up and walking from a lying down position? Do his front legs collaspe unexpectedly while running or walking? These details are hard to talk/think about, but they can be very helpful in troubleshooting.
Kathy and Angel Buddy. The mightiest of all lizard hunters!
Marianne-
Thank you for the thought out reply. I appreciate the info on the mitotane. It is a very new drug to me. I will keep this information in mind and research the UC Davis protocol and discuss it with my vet on Monday for when we come up with a new plan. Maybe this is just the change that we need.
As far as the macroadenoma, I have considered that as well. He currently doesn't have any neurological signs or vision deficits, so that's a plus. Although, it is still in the realm of possibility. I asked the neurologists on staff at the university hospital if they thought it was possible for a macroadenoma to have formed and possibly causing the insatiable hunger. Their thoughts were that if that were the case, it would also be pressing on the optic nerve and since he has no symptoms of that, we ruled it out for now. Not to say it isn't slowly growing. I'm hesitant on the CT cost until I get his cortisol back under control. When that's normal (or on the flip side and I can't get it to be normal), and if he's still symptomatic - we'll do another CT and compare it with his initial one.
As far as the hunger, I definitely understand a lab's drive for food haha. Love those babies. I discussed the possibility of the hunger becoming a learned behavior for Bear over the last couple years. The Dr said it was possible. Especially because the vetoryl 4 hour post pill ACTH stim values were very normal toward the end. However, she also mentioned that because we don't do ACTH stims at night 4 hours after the evening pill, it is possible his cortisol was unchecked at night and could have caused the continued hunger as well. So the uncertainty of his cortisol levels at night also lead me to switch to the mitotane. I would be surprised if the hunger is all a learned behavior though. I know it's been years, but I still remember a dog that I had to beg to get him to eat his dinner. To the point where I wanted to take him to the vet for inappetence a couple of times haha. And now he brings me his bowl at 2 in the afternoon after having a lunch portion at noon. I spoke with a nutritionist and she has him on a diet that allows me to give the largest amount of kibble for the calories. So he gets 3 cups a day spaced out between 3 meals. It's a lot of food for a little guy. He has even snuck into the cat food and ate an entire automatic feeders worth - that was a fun vet visit, but thank god he didn't bloat haha. So between the excessive hunger and the panting and the coat, I just wonder what else is going on, especially back when his cortisol was normal.
Buster's Mom-
He is uncomfortable mostly from the hunger. I can tell that he's never full. He licks the floor around his bowl if I don't gate off the kitchen (we're talking licking for hours if I let him), he ate an entire autofeeders worth of cat food (it was full- so several cups worth) after his lunch once which required an emergency vet visit so he wouldn't bloat, and he's just frantic when food is around. He inhales his meals so quickly that if I don't use a slow feeder, he chokes. Not that the slow feeder helps all that much. These are all behavior changes for him, he was never exceptionally food motivated before. That's one of the harder things to watch.
No pacing or difficulty settling at home. He does get a bit anxious and paces and won't settle if he goes to someone else's house, but I feel like that's just him. We don't put him in those situations very often anymore. No head pressing. No difficulty getting up yet. Front legs are completely fine.
Now his back legs are another story. I asked his specialist and she didn't know what to make of it, so maybe you might have some insight? To preface, he is on fish oil, a dechra joint supplement and gabapentin (bid). He has some muscle wasting in the hind end, more over his sacral area and hips rather than his legs themselves. So, he's an Aussie and loves to run, but over the last 6 months ish (not related to the vetoryl to mitotane change b/c it was also present prior to) his back legs begin shaking uncontrollably if he goes for too long (only talking about 5 minutes of pure running). Even walking now will cause his legs to begin to tremble maybe .25 mile in, so we don't do that anymore. I chalked it up to weak muscles from the cushings and started supplements and gabapentin. His attitude and his legs don't match up. He wants to continue running and playing, but I make him stop when his legs start trembling. He hasn't actually collapsed on his back end, but I'm pretty sure he would if I were to let him continue using them. If you have any thoughts of an underlying issue, or ideas of things to add to his meds I'd love to hear them. Thanks!