Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Hi Carole, thanks so much for sharing all the info you have learned from Dr Scott-Moncrieff. I too feel like i would have probably saved money by having a MRI early on rather than spending so much money on meds and ACTH Stim tests. But then nobody ever told me a macro couldnt be controlled with the meds. And honestly, when this all started at Davis, they didnt think we were dealing with a macro. She showed no neurological signs, except for the tremors and nobody could tell me what was causing those. But after reading so many threads here it seems that most of the dogs with tremors are dogs with macros, or suspected macros. I feel like if i knew for sure i would have approached things differently but i trusted the vets at Davis and they were most likely wrong.
Im shocked to hear that Dr Scott-Moncrieff feels that such a high number of pituitary cushings cases will become macros. I was led to believe it was a small percentage (10-15%). And from what im learning, dogs with macros should most likely be treated differently than the ones with micros. For instance, these herbs i was giving Charlotte are for a dog with typical cushings symptoms, and may be helpful for those, but Charlotte is no longer eating well, no pu/pd so they may actually be causing her more harm than good. But yet the pred doesnt seem to be helping much either. Im with you in wanting to know more. I feel so many here on this forum are advocates and its sad but it seems there is more info here than we are getting from even the specialists.
Laurie
Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Dear Laurie,
I agree that the revelations come by the day, the week and sometimes by the hour. I will ask Dr. Scott-Moncrieff for a cite to support her statement regarding macros. But, I wonder if it is her personal experience and observation. If accurate and I more and more believe it may be, it's scary and raises a host of other questions about diagnosis, treatment and prognosis for our dogs. There are a significant number of dogs on this forum whose response to chemical treatment is questionable. And, the investment they have made, like you and me, in trying to save their dogs, is astronomical. I'm not complaining, I would do it again (with far greater critical questioning),But, I believe that the ignorance regarding this disease is rampant among vets. I took skippy for a BP measure today and vet # 3 (at the local clinic) seemed dumb as dirt about Cushing's. Clearly she was following Scott-Moncrieff's direction as to testing and treating.
I had another conversation later today with the Purdue, fourth year vet student that I will share later. It was equally strange and uninformed.
Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
I mentioned this over on Charlotte's thread but i wanted to respond here too. It seems like dealing with a pit macro is so different than dealing with cushings in general. The more i learn and the more symptoms i see im thinking we have to take a different approach. For us radiation isnt an option but then its not a guarantee anyway. And the drugs can be so harsh and cause even more problems. But its sad that so many vets are so in the dark about all of this. Im still going to research some alternative treatments for Charlotte but of course i understand it may just be for a short time to give her quality of life for the time she has left.
I hope you and Skippy are having a good weekend!
Laurie
Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Hi Laurie,
I posted an article I found about milk thistle on your thread; I sent an email to the doctor about his research and will let you know if I hear anything.
Skippy remains a lethargic puddle; sleeping or laying prone about 23 hours a day. Last Friday I started him on Benazepril as BP is well over 200. He is eating some but has mostly stopped walking, maybe caused by the current bout of diarrhea. I called the vet for meds as the Imodium isn't cutting it.
Purdue called last Friday and they (and I) are very concerned about the new BP problem. The student mentioned Lysodren again and I asked her to talk with Scott-Moncrieff about the MRI clinical trial. I haven't heard back. Local vet will check BP again this Thursday; I am going to ask them to bring their machine and take the BP in the car. These vet visits are waaay too stressful.
I now have no idea of what's next or why. I have another appointment with Scott-Moncrieff on April 4. I guess they will check his lymph nodes and baseline cortisol and ask me about Lysodren. I have no answer today and I'm not sure I'll have one then.
Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Thanks for the article on milk thistle Carole, very interesting! I'm so sorry to hear about Skippy. I'm glad he is still eating, and I assume he is drinking. Charlotte won't drink so I have been putting small amounts of water down her via syringe.
Charlotte had a very bad night last night and at 3am I had pretty much decided to call the vet in the morning and arrange to end this for her. However, i got a message this morning from the Bowen therapist and she wanted me to know she had a supplement at the pharmacy waiting for me to pick up. She also moved our Wednesday appointment up to tomorrow morning so I'm going to see what happens over the next few days. The supplement she ordered for me is turmeric which I was well aware of. I had made a golden paste for Charlotte a month or so ago but I couldn't get down her since she wouldn't eat anything added to her food. These are capsules and the vet this therapist works closely with highly recommends them. Here is a link to an article he sent me:
http://www.turmericforhealth.com/tur...og-brain-tumor
I would also like to try the milk thistle but I'm only going to add one thing at a time. I'm headed over to pick up the capsules now and I'm hoping I will see some improvement with them and the treatment tomorrow morning. Charlotte is sleeping peacefully right now after having a fairly high dose of pred and tramadol early this morning. I will keep you posted on our progress.
Laurie
Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Laurie, I hope these holistic folks can help you with Charlotte's symptoms. I do understand how painful and frustrating it is to watch your dog suffer, alone and stumbling along to try to figure out what to do next, more pred, no wean her off the pred, end the madness, and then there is the CC and the symptoms. Sometimes, I just want to run away as it all seems so futile.
Skippy's vets are now actually collaborating. I received a call yesterday from the local vet, Dr. Timmons, to ask if Purdue has called with Skippy's urine creatinine results. No, they hadn't. The issue is that Skippy now has proteinuria, but still at a low level that is caused by the extremely high blood pressure that is caused by the Cushing's. Timmons called Scott-Moncrieff and they discussed upping/changing Skippy's BP meds to a stronger drug; they decided not to because the boy is so sensitive to meds that Scott-Moncrieff felt it would bring his BP down too fast. This all occurred in the past two weeks. Perhaps the five days of BP meds and now a round of Flagyl are helping some. He has moved from puddle status to ambulatory, walking and pooping are now slow normal. Eating is back to killer hunger, drinking buckets of water and peeing like a drunken sailor.
And, not to minimize the fact that these new problems are not potentially lethal or disabling, I continue to struggle to figure out the behavioral/cognitive problem. I have researched macros, senility and canine cognitive dysfunction until my eyes have glazed over. Skippy doesn't fit any of the profiles though he does have some symptoms, i.e., greatly reduced interaction, no playing, now occasionally staring and sometimes slow walking. But these are sometimes Cushing's symptoms and now the high BP, which likely gives him a massive headache. I want a psychiatric referral, first for me and then for Skippy.
I'm down to two choices (doing nothing is not a choice). Try the Lysodren after he is medically stable and see if it will work or an MRI and if it is a macro I won't have to put him through the Lysodren protocol. I would love for Dr. Scott-Moncrieff to take Skippy home overnight and observe him, but, since that ain't gonna happen... I will ask if the "behavioral" or is it the neurology people at Purdue could have a gander at him and share their impressions. If any of you happen to read this post and have any ideas or thoughts, I would greatly appreciate your feedback.
Oh, Laurie I ordered some so called "pharma grade" milk thistle from Amazon. If it doesn't help Skippy, who now has his own cabinet full of unused meds, I will take it alongside whatever strong liquor I plan to resort to next! Thank you,
Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Oh Carole, I can so relate with everything you said! Doing nothing was not an option for me either. I'm exhausted from research and the care (not complaining) and the mental stress of not knowing what to do.
I just got back from Charlotte's appointment with the Bowen practitioner and will be posting about it on Charlotte's thread.
You and Skippy are in my thoughts and prayers!
Laurie
Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Carole - I took some time to read this thread and although I've connected with you on the thread for my Mojo figured I would chime in here too.
Mojo has the exact same cognitive issues as Skippy and as you know, we are also likely dealing with a macro. I find some comfort in knowing that there is someone else dealing with these behavior/cognitive issues along with me - at least I am not sitting on this bus to actual insanity alone!
Please keep this forum posted if you have a breakthrough and I will do the same.
Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Hi Carole,
I just wonder if taking a video of Skippy would help the vets see a better picture of what is going on?
Re: Skippy, 12 y/o Yorkie with likely pituitary tumor (Trilostane)
Thank you, a video is a good idea if I can get him to do something besides sleep, eat and pee. Skippy went to the local vet this am for a BP check; it's even higher by another 10 points. Without further consultation, Dr. Timmons added 2.5 ml of Amlodipine to Skippy's meds to try to bring BP down. She said that without question, Skippy now feels like crap and we can't really assess what's going on. She did say that Lysodren would bring down his cortisol along with his blood pressure regardless of whether his pituitary tumor is growing or not. Is that the experience of other folks?