Laurie, I totally understand about you hoping that this is a cortisol issue -- I agree! Wishing both you girls the best of luck on Friday as far as getting some workable answers. Please let us know.
Marianne
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Laurie, I totally understand about you hoping that this is a cortisol issue -- I agree! Wishing both you girls the best of luck on Friday as far as getting some workable answers. Please let us know.
Marianne
Quote:
Originally Posted by labblab
Thanks Marianne!
Got fingers and toes crossed here too.
Let us know what they say. So hoping for good news.
Charlotte had her ACTH Stim test and a chem panel yesterday but we were told we wont have results til Monday. Im really worried because she is getting worse. Very lethargic and eating less. Her ears are red inside and her head is really hot. My husband says not to give her any more meds but i know thats not right. But i really think we are over medicating her! Would it be awful to skip a pill tonight?
Hi Laurie,
In this situation, I actually agree with your husband. I don't believe I'd give Charlotte any more Vetoryl until you get those ACTH results on Monday. You can always start right back again if it seems appropriate. In the meantime, missing a couple of days worth
shouldn't really hurt her, and it may be a big help if her cortisol is running too low.
Poor baby! :o :(
Marianne
Thank you Marianne, I'm so worried about her. This is the worst I've seen her. She has no energy, isn't interested in food other than really good treats (gave her some beef I was cooking for dinner) and is shaking so badly. We won't be giving her any more Vetoryl until we get the test results. I wish there was something more I could be doing for her. She is so weak. :(Quote:
Originally Posted by labblab
Laurie
I think you did the right thing by stopping the Vetoryl. This is one of the good things about this drug - it can be stopped and restarted without losing much ground at all and, in fact, is the correct thing to do when a dog presents as Charlotte has. I hope she starts to perk up soon as the drug leaves her system; it has a short life in the body so you should see changes quickly. Let us know how she is doing!
Hugs,
Leslie and the gang
Charlotte colapsed last night when she got up from her bed so we brought her into bed with us. She was trembling badly last night before bed but while sleeping with us it almost completely stopped so we were hoping she was improving. But she is still very weak and she just vomited, only a very small amount but its the first time she has since starting the vetoryl. I called Davis and although they have the test results back from Friday they said that only her vet can discuss them with me and he wont be in until tomorrow. My husband is furious and doesnt want to take her there for an emergency call but i think she needs to be seen. Since its Sunday her local vet is closed and the closest emergency clinic wont have her records or the results from the ACTH test. I dont know what to do. I assume they will probably want to give her steroids but if i knew the test results i would have a better idea of whats going on. From everything ive read her symptoms indicate low cortisol level, like maybe she has been thrown into addisons disease. It has now been 24 hours since her last dose of Vetoryl (30mg) so i had hoped she would be doing better by now. How long does it usually take to get out of the body? Im scared and dont know what to do.
Get her to an ER NOW. If her cortisol has dropped that low, she is in a life-threatening situation. If it is not the cortisol, something is going on and she needs to be seen asap.
Let us know what you decide and how your sweet girl is doing.
Prayers and healing energies flying her way.
Hugs,
Leslie and the gang
I agree with Leslie, I'd go ahead and take her in whether it's to Davis or locally. I am furious with Davis, too, that they are not offering you more direct feedback and guidance, and I would definitely take that up with your vet next week. If they are not going to provide 24/7 support, you should have been given oral prednisone to have on hand at home. But that is beside the point right now. I hate it that you'll have to bear the cost of a weekend ER visit. But if you haven't been given any oral prednisone to give Charlotte at home, then it's safer for her to be evaluated at an ER and given a steroid there if it's deemed appropriate. I guess the bottom line is that a temporary steroid won't hurt her, no matter what. And if that's what she needs, it sounds as though she should be given it sooner rather than later.
Marianne
Yikes! I'm so sorry you're not getting better suggestions from Davis but also glad you have come here and Leslie and Marianne were available to respond. Please let us know what you find out, wherever you take her.
Thank you Leslie, Marianne and Shana. I was feeling so desperate and confused this morning. I ended up getting in touch with my local vet and he was in this afternoon for emergency only. He gave Charlotte a cortizone shot, fluids and an injection for pain. He believes her shaking is from pain. I'm not sure it is but it breaks my heart to think it could be. She is resting now, still trembling and very lethargic. She couldn't even walk into the vet's office, we carried her in and out. This vet said he was worried that if we aren't prepared to spend a lot of money on testing then we may have to put her to sleep. The weird part is nobody can really figure out what is wrong with her. The vet today took xrays (didn't charge me for them) just because he was so sure he would see something that gave him some indication of what is going on. He didn't like the way she was breathing but found nothing he could contribute it too. He palpated her abdomen and didn't think there was pain there. Her liver is enlarged but not abnormally so for a Cushings dog. He did an in-house basic blood panel and said most of her levels were normal or only slightly elevated and there was nothing to indicate an obvious problem.
While I was waiting today I got a call from Charlotte's Davis Vet. He is home sick but had been alerted I had called and wanted to go over her test results with me. He was surprised she was doing so poorly. He said her bloodwork is improved over what it was when he first saw her and her ACTH Stim test was low but not low enough to send her into an addisonian (sp?) episode. Here are the numbers from the test Friday:
Pre 1.6 ug/dl
Post 3.1
He said maybe this is too low for her and suggested we not give her anymore Vetoryl (which we had already discontinued). He said if it is indeed the Vetoryl (which he doubts) she should be doing better tomorrow. I asked about a macroadenoma and he said it's very possible. The next step would be a ct scan and then radiation, which is more of an investment than we can afford. I feel so hopeless right now. I don't have money to keep throwing at all this just to find out nothing. It makes me sick to think about euthanasia just because I don't have money to continue testing, but I don't have it.
I sit here typing and she is laying at my feet. She trembles and seizes her front legs and over her shoulders when she is resting but awake. When she goes into a deep sleep it almost always stops. She stretches her front legs out, probably trying to stop it. I don't see a difference in this now after having an injection for pain. We haven't asked her to get up but the vet told me to have her move around a bit tonight. I hope she is able to do it.
I've cried my eyes out and can't even eat. I feel so helpless. If any of you have any light you can shed on her situation I sure would appreciate it. I really didn't expect all this. I know this is a horrible disease but I thought we would be able to control it, at least for awhile.
Laurie
Laurie, I am so sorry you don't have an answer for what is going on. And I wish I could offer you wisdom or even a suggestion to try. Please try to be kind to yourself. You are a wonderful mom to Charlotte and she knows it. I hope you are all able to get some rest tonight, and pray she will show improvement in the morning.
Update... Charlotte went from not wanting to get up to not wanting to lay down. She is walking all over the house, following us everywhere. She seems a little confused but she responds to her name. She acts like she wants to drink but she goes to her bowl and just stands there and looks at it. She wont use her mouth or tongue. Its like she doesnt remember how. I gave her some very tempting treats and she acts like she wants them but doesnt know what to do. But its incredible how much she is moving around compared to earlier today when she really acted like she was a limp rag. I will update in the morning. I need sleep!
Laurie, I am absolutely heartbroken that you and Charlotte are suffering in this way, especially since it mirrors my own experience with my Cushpup so closely :( :(. I've already shared with you that he suffered from unexplained tremors that sound so similar to Charlotte's. But in addition, here is a description that I've posted elsewhere about our final days with him.
As you see, our experience was eerily similar to yours with Charlotte. And so I do have to believe that she may be suffering from a macrotumor, as well. I am so sorry to write this, Laurie. But I just want you to know that you are not alone in your pain. You have been doing everything within your power to help Charlotte. But sometimes the miracles we are hoping for just aren't there and there are limits to the options we can consider, both for ourselves and for our beloved fur babies.Quote:
Acted distant and dazed, as though "he" was leaving us;
Was very restless;
Started pacing endlessly through the house;
Started relieving himself in the house and in the car;
Lost his balance and coordination.
The crisis came suddenly when he stopped eating and drinking entirely. We had stopped the trilostane by that time, and again his cortisol level/labwork was fine. The hardest part was that he acted thirsty and would walk over to his bowl and lower his head and try to lap up water. But his tongue just wouldn't make contact with the bowl -- it was as though he had lost the ability to understand how to coordinate his mouth. It was awful, and that was when we said, no more. Our IMS thought it still might be possible to buy him some quality time with radiation therapy. But for a variety of reasons, we decided against it.
Of course my vision is colored by my own experience, but I think sometimes we just have to make the best decision we can with the information and resources that are immediately before us. This doesn't mean you (or I :o) failed our babies. Sometimes there simply isn't enough time or money or ability to do more in the face of their suffering. We love our babies so much, and our decisions for them are made out of that love. As one of our members has said, first and foremost we have to ease their suffering, even if that means we must take on that suffering ourselves.
I do not know what this day or week will hold for your family. It may be the case that the steroid injection has indeed provided some anti-inflammatory and additional pain relief, and I will surely hope that discontinuing the trilostane may bring additional improvements! But if Charlotte remains severely compromised overall, I want you to know that my heart is with you. Whatever happens or whatever you decide, I can promise you I will understand and be here to support you.
Sending so many hugs,
Marianne
Thank you for sharing your experience Marianne, that is exactly what ive been afraid as i witness what is going on and my heart is breaking.
Last night after i went to bed my husband got her to drink. Since then she has acted confused at her water bowl several times but then finally starts to drink on her own. So for now im not worried about hydration but she still hasnt eaten anything. She was up several times during the night to pee and poop. She is so much more alert than she was over the past week but yet seems distant and confused over certain things. We brought her in bed with us and she snuggled up and slept pretty well. She was still trembling but not too bad. Our local vet feels like the trembling is from pain but yet he gave her an injection of pain meds and she was still trembling just as much. I guess there is no way of knowing for sure but we dont want her to be in pain.
This is going to be a tough week. I have oral surgery on Thursday, ive been thinking of rescheduling but im in pain and have already arranged my work schedule around it. Im barely able to eat, im a wreck.
Laurie
Thank you so much for your update, Laurie. It is interesting (and of course good!) that she's more physically active since discontinuing the trilo and getting the steroid injection. Even though Charlotte's ACTH results were very good in terms of Cushing's treatment, it is indeed possible that she will feel better with her cortisol running higher, especially if she does have a macrotumor. We have had members whose dogs underwent head imaging and received confirmed diagnoses of macrotumors. And in some instances, their neurologists recommended dosing with a daily controlled amount of oral prednisone in addition to the trilo, or shifting solely to the prednisone alone. Strictly from a Cushing's standpoint, this doesn't make much sense. But the higher level of steroids apparently served to reduce the swelling and inflammation of the brain tissue, and gave the dogs some degree of temporary relief. Of course, the flip side is that you may end up seeing a rebound of Cushing's symptoms.
Anyway, I just wanted to mention oral prednisone as a possibility that you might want to discuss with the Davis specialist. Even in the absence of confirmatory head imaging, he might feel it's worth giving a try. Definitely please keep us updated as to how things proceed.
Marianne
I am so sorry to read the latest with your sweet girl. The way she is acting about the water and food reminds me of how my Squirt was after she had a stroke. It was like she had forgotten how to use her tongue or mouth. She was like that, slowly improving, for several months but she DID get better. I pray it is something like that with Charlotte and she will get better over time.
Please keep us informed as you can and know you are not alone.
Hugs,
Leslie and the gang
I took Charlotte in for a follow up with the local vet today and he said she made his day. He told me he thought that it was a 90% chance she wouldnt make it through the night. She not only walked in the door today she trotted. She jumped up on our bed when she got home which she hasnt been able to do in a long time. She is eating now, although still finicky, and she rode all the way to the vet with her head out the window. She is going to be a tired pup tonight!
The vet gave her another cortisone shot and sent me home with prednisone and 3 days of antibiotics. He also gave me some antacid and nausea medication. He said as long as she is doing well we can come back on Monday for reevaluation. He thinks we will keep her on pred for awhile and then watch for cushings signs to come back and then decide how to procede.
Im just so thankful she is doing well right now. I hope we have some quality time left with her!
Laurie, that is super news -- you've made my day, too! :)
I think for right now, you just take things day-by-day, and what a good day you all had yesterday. Long may they continue!
Yay! I'm so happy to hear this news, and hope she continues to do well.
Wonderful news...you must feel so relieved!
Oh goodness! This is GREAT news! Low cortisol was the best hope for what was going on and it sounds like that was exactly what the problem was! YAY!!!! :cool::cool::cool:
Thanks everyone! Charlotte has that cute Boxer expression back on her face that I haven't seen in quite awhile. She is acting almost like she used to before she got sick with Cushings. But now we have a new problem. She doesn't want to settle down. She slept a little last night but for very short periods. She would wake up and walk all over the house, like she wanted us to get up with her. She would walk over to my side of the bed and stare at me like she wanted me to get up. I'm thinking the 2 injections of steroids in 2 days was probably too much. Maybe it has caused her to have insomnia? I was worried at first she was in pain and couldn't get comfortable but I would get up with her and she was so perky and would trot outside when I let her out to potty. It's like she's all "hopped" up on something and I assume it's the cortisone. Does that make sense?
Laurie
Yes, I would think the steroid injections could be contributing to insomnia and restlessness, so hopefully that will abate as the steroid level normalizes a bit. What instructions have you been given re: timing and dosage of oral prednisone if you do switch to that? And does the Davis specialist yet know about these changes in Charlotte?
As pleased as I am that she is doing better, it does raise a host of questions in my mind. Her ACTH results were right within therapeutic range for a Cushpup, and so this dramatic turnaround while being given supplemental steroids is a puzzler to me. Has the Cushing's diagnosis been an error? Is there something else going on that the steroids are addressing? And not to be a downer :o, is the macrotumor still a possibility, with the supplemental steroid offering enough relief from the pressure and swelling to normalize some of her behavior but not all of it? I'd be curious to know what the vets at Davis think about this whole scenario...
Marianne
Yes Marianne, all of this has occurred to me as well. I spoke with Charlotte's Davis Vet the night we brought her home and filled him in, then emailed him yesterday with an update and asked him about oral pred and this was his reply:Quote:
Originally Posted by labblab
"Thanks for the update. Glad she is doing better! I think another dex injection is fine, but i would not do oral pred — she will have plenty of steroids in her from the Cushing’s now that she is off of trilostane.
Remember, we did the acth stim to prove that her cortisol wasn’t dangerously low - and it isn’t. I’d give her time w/o extra steroids. They resume the trilostane at a lower dose (15mg twice/day?) when she is symptomatic again.
The only treatments for macroadenoma are surgery (in the Netherlands) or radiation. There is no medicine for it (although sometimes the anti inflammatory effects of the Cushing’s steroid hormones helps to shrink it a little)."
This all makes sense to me but since we aren't completely sure what we are dealing with it does make it a little harder to decide what to do. The Trilostane did not do her many favors. It helped with her water intake/frequent urination and she did perk up a little, but not a lot. After the first couple of weeks she started to go down hill and ended up much worse than before we started her on it. So I think we are all in agreement the dosage was too high for her, and maybe at a lower dose she will do better on it. But I guess my question is why not a low dose of pred to keep the inflammation down? I guess his explanation was that she may get some anti-inflammatory effects from the Cushings steroid hormones, which is maybe why she got worse on a high does of trilo that was suppressing those hormones?
I have a tremendous amount of respect for the vets at US Davis for the obvious reasons. My local vet has treated cushings but admits he is not an expert. But at Davis they push more testing and treatment which I simply can't afford, and my local vet understands my financial limitations. We want to do the very best for Charlotte and I know the best would be a CT scan to be sure what we are dealing with. Unfortunately we just can't afford it right now. So not sure what to do at this point other than just watch her and see how it goes day to day.
Laurie
I would do exactly as you are right now, Laurie. I think the Davis response makes sense, in that I wouldn't launch into oral prednisone right away, either, since she's totally off the Vetoryl right now and cortisol does offer similar anti-inflammatory benefits. I would want to wait a bit and see how she responds once the injection wears off and her natural cortisol level builds back up. If she truly has a macro and Cushing's, you'd be looking for a balance between offering relief from the neurological symptoms and also the classic Cushing's issues. Layering prednisone on top of uncontrolled cortisol could perhaps tip things too far in the other direction. I do think that's why some neurologists prescribe both trilo and pred simultaneously -- in order to control the cortisol level in addition to a specific dose of prednisone. But I'm honestly not sure how well that regimen truly works. So for right now, what Davis is recommending makes sense. And we'll all be right here alongside you, taking things a day at a time. Once again, I think you and your husband are doing an awesome job of caring for Charlotte under such emotionally trying circumstances!
Marianne
I totally agree with you Marianne. I think at this point we just wait on both the pred and the trilo. Just watch her and see how she reacts once the steroids are worn off. Maybe with the higher cortisol level she will do alright for awhile without any drugs at all. I sure wish we could afford to do the CT scan so we would know for sure if we were dealing with a macrotumor, but that is what makes the most sense right now.Quote:
Originally Posted by labblab
Of course after keeping us up all night, now she is sleeping!
Whew. Oh my goodness. I can't believe what a horrible weekend you had and a terrifying one too. I bet you just want to sleep for a week after that.
I'm glad she is doing better. yay for that! It does seem to be a trial and error right now and the plan you have is a good one. So crossing fingers that she continue to do okay and be more like herself.
Hi Laurie, I just now saw your new reply posted on the "Macroadenoma" thread, and I'm wondering how Charlotte is doing today. You mentioned there that you had started the oral prednisone after all. How are things going for you guys?
Marianne
I had oral surgery this morning so im in bed recovering and Charlotte is laying next to me. She is barely tremoring while she sleeps but its gotten worse when she is awake. I feel like she is having some pain too, although i dont know whats causing it. I wish i knew if the tremors were painful or just a neurological response that are just highly irritating. She is drinking well but hardly eating. The only thing she wants is boiled chicken and ground beef. And giving her pills is a struggle because she doesnt want anything she used to like. Ive tried everything...pill pockets, cheese, hotdogs, peanut butter and even ice cream which worked with one of my old dogs. Ugh!
When she is up moving around she looks stronger than she has in weeks. She is moving faster and her ears are perked up more. But then she will look at me like she is hurting and it breaks my heart. Its hard to think about euthanasia when she doesnt look old and feeble but i dont want her to suffer! And sometimes she is shaking so bad i wonder if we are being humane.
We started her on some pred last night because she was shaking so badly and starting to be more lethargic. She seems a bit better today. We are also giving her tramadol. Oh how i wish these babies could tell us what they are feeling!
Laurie -- another thing you might want to try re pills is what I resorted to when nothing else worked with my Abbie. My vet suggested I get some very palatable cat food (I used Pro Plan Focus Chicken & Liver Pate) and put that on the outside of the cheese ball (I use american sliced cheese as it is very moldable). Abbie loved it for a while. Now I take the cheese ball and roll it in very, very thinly sliced chicken. Both options I have to stick down her throat (actually in a little pocket at the side of her throat) and hold her mouth shut until she swallows. I also have at the ready another small piece of the sliced chicken to give her as soon as she has swallowed the cheese ball. Every once in a while I don't get the cheese ball in exactly the right spot and she manages to spit it all up -- I rarely try a second time as I don't think it is worth it!
Thanks Judy, i will give the cat food a try. Right now she just isnt very interested in anything. I assumed once the cortisol levels incresed she would get hungry again. Right now we are doing pretty much what you described. I hate it though and hope she will start taking something well.Quote:
Originally Posted by judymaggie
On a side note, i see you are in Florida. We have been thinking of moving there for awhile now (Tampa area) and im wondering about vet care there? Being from California im used to certain things that will be hard to get there but not sure about medical and vet care vs here. Would love your thoughts.
She was tremoring so badly late yesterday we decided to go ahead and give her 20mg of oral pred last night and again this morning. She is doing better so we will give her a half dose again tonight. Its just kind of trial and error at this point. She took a short walk with my husband and is sleeping really well right now. Exercise seems to help her but i dont want to over do it. She is drinking a normal amount of water but still not too interested in food. Any suggestions Marianne?
She was tremoring so badly late yesterday we decided to go ahead and give her 20mg of oral pred last night and again this morning. She is doing better so we will give her a half dose again tonight. Its just kind of trial and error at this point. She took a short walk with my husband and is sleeping really well right now. Exercise seems to help her but i dont want to over do it. She is drinking a normal amount of water but still not too interested in food. Any suggestions Marianne?Quote:
Originally Posted by labblab
Hi Laurie, I'm glad the prednisone seems to be helping with the tremoring, but my worry is that the dose you are giving her is really, really huge -- 50 mg in the space of 24 hours. Unless your vet has specifically told you that's OK, I don't think you can keep giving her that much and you will need to back off considerably. I really have no idea what the optimal dose is in this situation, but unless I was told differently, I wouldn't feel comfortable with more than 10 mg. every twelve hours. But again, I really don't know what's OK in this situation, especially since she's also off the Vetoryl. I'll be very anxious to get today's update.
Marianne
Adding Prednisone can temporarily reduce neurological symtoms by reducing the swelling around the macro. It is a tricky situation because it acts like cortisol in the body. Our Cush pups already have very high levels of cortisol. It is sometimes precribed along with Vetroyl as a combo, thus keeping the cortisol at a safe level. It did help my pup for about a month. In the case of an enlarging macro, most of us manage symptoms to keep our pups comfortable for as long as possible. The tumor will continue to grow and eventually take over.
A neurosurgeon with her team of neurologists oversaw Buddy's treatment. He was monitored by phone daily (seven days a week) by this very dedicated neurosurgeon. Dosages were tweaked according to how well Buddy was, or wasn't doing each day. He was on the combo, but even then adding Prednisone was done very carefully. Buddy weighed 16 pounds. Intially was half of a 5mg. Tablet ( 2 1/2 mg. once per day. He was eventually dosed twice per day, but NEVER MORE THAN 5mg. In 24 hours. We tapered down as soon as Buddy started doing better to find the smallest possible dose. He was often taking a quarter tablet twice per day. It was a daily shifting. Too little, he'd be miserable. Wouldn't want to get up. It was a very fine line.
I understand how how hard this is. I lived through it and still relive it often. Please proceed carefully and make sure that someone who knows what they are doing is monitoring VERY carefully. I am so sorry that Charlotte is having such a hard time. This situation sucks! I am so sorry. :o
Kathy
Quote:
Originally Posted by labblab
The pred is 20mg tablets and instructions from her local vet was to give her 1 tab in the morning and a half tab at night the first 2 days and then back off to a half tab every 12 hours. So you are right on with your thoughts Marianne. He told me that to reduce inflammation in a macrotumor it would be 20-25mg twice daily but if it was a addisonion type crisis it would be much lower, about 5-10mg per day. Of course we dont know for sure but we are assuming its a macro so she will most likely need more than the 5-10mg but we dont want to over do it either. So today she starts a half a tab twice daily which will be 20mg a day.Quote:
Originally Posted by labblab
She slept a lot yesterday, kept me company in bed while i was recovering from my oral surgery. She hardly tremored at all. Her appitite is a little better this morning but still picky and wont eat her dog food alone without treats. Overall the tremors are definitely better from a couple of days ago but still bad when she is resting. She isnt as perky this morning but moving around quite a bit and drinking well.
One day at a time...
Laurie
Laurie, thanks so much for this additional info, and now I feel very much relieved about the dosing! I'm also so glad that Kathy had the chance to chime in. It looks as though her Buddy was maintained for a time on a prednisone dose that would translate into about 20 mg. daily total for a 60 lb. pound (not sure how much Charlotte weighs, but am guessing), so that's right in the ballpark as to where you're also transitioning for the moment.
I'm sending big well wishes to you on recovering from your oral surgery (BIG YUCK :(). And yes indeed, one day at a time. As you can already tell, I'll start bugging you if I don't get your updates, so please do keep checking in with us...:o ;)
Marianne
Buddy was also dosing Trilo at the same time. Please consider that when estimating prednisone dosages in dogs with already high cortisol due to Cushings. Trilo kept Buddy's cortisol levels in check. That would make a difference as to how much Prednisone can be safely given. ;) There are many variables. That is why close monitoring is essential.
Kathy