My girl pug (confirmed Cushings & confirmed calcinosis cutis) / Tobey has passed

Cool! I hope this one is much better than the last and that you and Tobey are able develop a great relationship with them!

Yes, I am very excited for the IMS!

I am taking Tobey over to see my friend & groomer tomorrow. Much as I hate to do it, we are going to bathe and clip back her fur. The lesions are still very much present, but moving somewhat slower than her first outbreak. I want to get all that hair off of them and away.

Boo, my hopes have been dashed. Or, at least postponed. :( The IMS has not committed to a rotation schedule as of yet, so we are no closer to an appointment. Hopefully, he will make a commitment soon and we can get in to see him.

I figured I would bump my thread up and give a quick Tobey update.

She's still on her 5mg twice a day. The CC lesions have stagnated. No movement. They aren't better; they aren't worse. They are just there, from the top of her head to the middle of her back. They are still dry and hard. I was dreading the bloody raw stage -- but, this lack of movement is so frustrating! I want them up and out already!

Other than that, her symptom control is really good. Drinking and peeing are normal. Appetite is good too. Minimal panting, unless she gets too hot. She was able to do a quick 10 minute walk yesterday. :)

Glad to hear....

You're such a good mom!

It sounds like Tobey is doing well and stable at this point. That's all really good even with the frustration of the horrid cc.

:)

Hello there,

Not sure this thread is still active, but Lori referred me here. Heard this is where I go for CC advice. I have a 9yr old frenchie who was recently diagnosed with Cushings and appears to have Calcinosis Cutis. I've seen photos of the disease. Scary. Does it always get that bad. Does it hurt? Are there meds for the pain? Do all dogs with Cushings get this?

My girl has hardened ripples along the sides of her abdomen on both sides and it seems to be forming on the back of neck where she was shaved for a surgery last December(long story...see OG post) as well. Hair is not gone yet, but I can see redness under rippled areas. Sort of like exaggerated hives.:eek:

~Margies Mom

Hi Margie's mom - yes, Tobey's thread is active, mostly. We just have our slow times. Like right now.

If you are dealing with CC, the good thing is that you have started treatment already, before it got really bad. If you look at Tobey's album, you'll get an idea of how bad it can get when it's untreated. The fact that you are already bringing her cortisol down before the lesions have completely bust open gives me some hope that she may never get as bad as Tobey did. We've had other members here that only dealt with mild cases. Jedd comes to mind.

There is NO cure for CC. The best treatment is bringing the cortisol down into range, which would be a post ACTH figure of 5.0 ug/dl or lower and keeping it there long term. This is key. You are always going to want to keep a tight reign on that cortisol. People that don't battle CC can have cortisol as high as 9.0 ug/dl, as long as symptoms are controlled. For those of us with CC, we need it lower.

Yes, I do believe it's painful. I used to give Tobey tramadol as needed. You should too. It's perfectly safe to give with vetoryl. Tobey has been on much, much stronger pain meds with her vetoryl and it was fine. You can always call dechra too.

Regardless of the cortisol now, keep in mind that the lesions will have to work their way through the skin and out. They can be hard and flaky. Essentially, they are calcium deposits / plates that must work their way up and out. They may or may not bleed. My girl has many of them right now, but since she is actively on treatment (vetoryl), they are just dry and flaky. No bleeding.

As for what you can do now. Keep them dry and clean. Watch for secondary infection. Run a course of minocycline abx, if you can. And give her pain meds as needed. I used tea compresses sometimes, on the worst ones. But we aren't doing that on this second round.

Anyway, I've typed enough for tonight! Good luck!

Quote:

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Originally Posted by Renee

I figured I would bump my thread up and give a quick Tobey update.

She's still on her 5mg twice a day. The CC lesions have stagnated. No movement. They aren't better; they aren't worse. They are just there, from the top of her head to the middle of her back. They are still dry and hard. I was dreading the bloody raw stage -- but, this lack of movement is so frustrating! I want them up and out already!

Other than that, her symptom control is really good. Drinking and peeing are normal. Appetite is good too. Minimal panting, unless she gets too hot. She was able to do a quick 10 minute walk yesterday. :)

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Hi Renee,

Thanks for sharing the story of your baby's journey. My girl has been newly diagnosed. She has CC and I was wondering about how long before the hair began to fall out and sores began to form? Right now she just has hard ripples underneath her fur with occasional redness. It's been about a month since I first noticed them. Does it always form into the sorers? My girl is at the vet as we speak, getting her 3rd blood test done. Hope it's the last one for a little while! It's getting really expensive.

~Margie Bells Mom, Pam

Hmm, if she's had them under the skin for a month or more, she may never get them very bad. Most active CC lesions are very aggressive. In the beginning it would take a week for the lesions to break through and become raw / bloody. The hair would come out in clumps with bloody skin attached to the ends. This time around (second time for us), they came through rather quickly as well, but have not been raw or bloody and the hair has been slower to fall out. Just very thick, hard, and flaky. And definitely visible.

Have you had a biopsy done? That is the only true way to diagnose CC. We did have a few punch biopsies done to confirm. You might consider doing that. If they aren't progressing, then I would suggest you just focus on controlling her cortisol and watch to see how the ripples develop.

Hi Renee,

Just picked Margaret up from the vet where she had another test done. Results will be in by Wednesday. Unfortunately when I got her home I noticed a discharge coming from her vaginal area and when I turned her over I spotted what I think is an open CC lesion. I could also see flakey dry skin on her sides, so I cleaned it and sprayed it with chlorihexidine spray? I can see that she's going to have to get tested for sure for CC. I'll make an appointment next week, after the holiday.

"If you look at Tobey's album, you'll get an idea of how bad it can get when it's untreated."

When you say untreated, do you mean the cortisol levels for the Cushings or direct treatment for CC?

What about the trembling? Has anyone experienced that too? Is that because she is in pain? I noticed when she had the tramadol pill she stopped the trembling. Do I need a prescription for minocycline? Is it something I can get from the vet?

Thanks for the support, this site has been so helpful and eye opening!

Margie's Bells Mom, Pam

When I mean untreated, I mean this was before we began cushings treatment (vetoryl). She had her CC for approx 6-8 weeks before we started treating her cushings. So, it had plenty of time to really get bad. There is no direct treatment for CC - there are things you can do to lessen the discomfort and protect from infection, but lowering the cortisol is the only way to bring those lesions down.

The CC lesions don't usually move onto the stomach, but they can. Also, the vaginal discharge can be a side affect (rare) of vetoryl. I know Tobey's thread is likely too long to read through, but she had that side affect for a few weeks / months too. She just had random vaginal discharge. She is spayed, so I know it wasn't that.

Trembling is not an issue we've had, but it is a well documented side affect of vetoryl, again. If the tramadol helped, then I suggest you continue to use it on occasion.

Minocycline is a prescription anitbiotic, which has studies showing it can aid in the treatment of CC. I can't speak to whether it really has a significant impact or not, but I think it's worth running a course, especially since Margie's CC is not very bad right now.

My Rollie has cushings and possibly the worst case of CC the vet has ever seen. Hes been on Vetoryl for almost 4 weeks now and i feel like the cc is getting worse. Its his whole back and face. =( breaks my heart.. any tips? Feeling hopeless.

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Administrative Note: Rollie now has a new thread of his own located here: http://www.k9cushings.com/forum/showthread.php?t=8270

Hi everyone, quick update on my girl, since I see my thread got bumped up. I've been crazy busy these last 6 weeks with the tax deadlines hitting me. The final deadline is next Monday, then I'll be able to catch my breath!

Tobey's CC is still static. Very, very slow healing. Still some hard crusty patches, but also some fresh skin in a few small spots. I just had her tested for a UTI (cultured), and will be doing a stim test / bloodwork next Tuesday. She (FINALLY!!) sees the IMS next Thursday for a consult. I am sooooo excited to see this guy! Her cough is very minimal, but I'm hoping she puts on a good show for the IMS so I can get his feedback. Oh, how I wish he had been here last February!

Anyway, I am thinking about you all and hoping everyone is doing well. We will update, and try to be more active, after next week.

Exciting that you will finally see the IMS. I am curious what they will say about
Tobeys case.

Do let us know and hope you survive tax season unscathed. :)

Update from the IMS consultation today.

First - stim test 10/18 - baseline 2.7, post 3.8. Super, super happy with these numbers. This is 5mg BID.

The IMS' name is Dr Ronald Walton. I am so excited he is here in Alaska (on rotation) for all of the pets that may need his service.

Since Tobey is very well controlled right now *YAY*, he didn't have much in the way of specific suggestions or input to improve anything. He complimented her tight clinical and symptom control.

A few general comments he made that I would like to pass on:

-- He is a BIG proponent of trilostane over brand name vetoryl. I was actually a bit taken aback by his stance on this. He told me that he is an exclusive trilostane user (from Diamondback, Roadrunner, and Wedgewood only). He has big issue with Dechra and feels they are taking advantage of owners, not only with vetoryl, but with some other drugs as well. I don't plan on switching, but for those that hesitate, here is one more IMS in favor of the compounded. I did ask about the study in regards to compounding discrepancies. He was very adamant that those studies were not credible and definitely not applicable to the three large pharmacies he uses. So, take that for what you will.

-- He is also very big on the use of DMSO for CC treatment, which made me a bit sad, as I never liked the substance. He explained some of the science, in that the DMSO (of course) does not TREAT the CC, nor eliminate the cause, but that because it is a solvent, it helps to literally break down the calcium crystals in the active lesions, which can lessen some of the irritation. It has to be used daily, and one must wear gloves while using it. It should be massaged into the lesion, not just spread about on top of it. I won't be using it, but this information may help some people, especially those that aren't actively treating.
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Anyway, the biggest thing we spent time on was her coughing. He is fairly well certain that she has a collapsing trachea. We discussed treatment options, which range from installing a stent (not something I am interested in), to medical management using medications. He suggested we do a fluoroscopy to see where her collapse is located and how bad it is. I declined at the moment, because I am trying to decide what I want to accomplish and what I want to put her through. Now, in her defense, she is happy at the vet's office and does not have anxiety, so that is not the issue. I'm just not sure if there is anything OTHER than medical management that I would do for her, so in that regard, why waste $600 for the procedure?

Feedback? Thoughts?

My Marvin has a collapsed trachea, as did my other Pom, Bear. Both are/were medically managed with Hydrocodone and Terbutaline. Leslie had posted to a member about using Adequan for collapsed trachea, which sounds very interesting and I've been wanting to find more information about this ;)

Super good stim numbers!!!!!

Yay for tight clinical and symptom control!!

I wish I had some sources to give you about the Adequan. One of the vets the rescue I was working with used told me it was how he treated small dogs with collapsing trachea and that it worked most of the time.

Leslie, this link someone else mentions adequan for collapsing trachea too.

http://www.yorkietalk.com/forums/yor...blem-news.html

Great numbers Renee!

That is interesting about the DMSO, breaking down the crystals.

YAY! Glad to hear Tobey's stim test results were good!

Sounds like you had an interesting visit with the IMS.

It's interesting about the Adequan. I have to keep that in mind since Raleigh has a collapsing trachea.

Hey Renee, it's been such a long time since we've gotten an update on Tobey. Hope you all are doing well! We'd love to hear from you whenever you may have a chance to write again.

Marianne

I too want to hear how Tobey is doing and esp with the CC as Morgan is just now going through the beginning stages of this horrible skin condition. Wondering if you did any further rounds of minocycline as I was thinking of asking my vet for it next week. Hope Tobey is ok.

Hello friends. Well, looking at my last post, it has been a little over a year since I was here. What can I say, other than that I needed to get away from cushings. I quit the FB page and stopped coming here. It's a painful disease and can be so draining. I needed the mental break while she was doing okay, because frankly we had too many bad experiences there for a while.

On January 20, 2018, my amazing and brave beautiful girl crossed the bridge. In the end, it was almost certainly the cushings that took her life from me. This past few months have had their ups and downs for her, but before October, she had a really good year. No emergency scares; no near death experiences, and although she was declining, I had beat the odds so often in her favor that I had the false sense of her being invincible. In October she got a horrible melting ulcer and took it really hard. It seemed to affect her brain somehow and I was afraid I would lose her at that time. We got through the ulcer, even though her mental capacity never really seemed to get back on track. She was already blind and deaf, but she started getting lost in the house, forgetting where things were, bumping into everything, and seeming to be more 'out of it' that usual. Who knows, it could be her tumor was growing and causing her mental decline. Again, I was probably in denial.

I want to let everyone know that along with suffering from the rare calcinosis cutis, and having calcium deposits in her kidneys, it was pulmonary mineralization that most likely ended her life. I don't know why she was cursed to have these rare cushings symptoms or why her body seemed to not be able to process the excess minerals. In the xrays at the end, her lungs and heart were very diffused. I never once thought to xray her over the past year while she was doing well and I had no idea that pulmonary mineralization was even a symptom of cushings (angry at my vet for not thinking of this either). My mistake for thinking her coughing was unrelated to cushings. Even had I seen the mineralization starting, I don't know that I could have stopped it given how aggressive the minerals were with her. Nor do I know if I could have caught it in time to make any kind of difference in anyway. I'll never know. In the end, her lungs and heart were so mineralized that she was suffocating to death. I tried to save her, but she was ready and we could ask no more of her. We were terrified of her suffocating to death. My daughter and I held her and let her go.

I am so angry at this disease. I just hate it. I hate cushings for taking her life. I hate it for giving her these horrible symptoms and filling her chest with minerals. I hate that she had to suffer from some of the rarer symptoms and only got four years of life. I hate that I could not hold her longer at the end for fear that she would suffocate before they could inject her. We had mere minutes after they took her out of oxygen before we had to let her go.

I don't want to incite panic in those that have dogs suffering from CC, but please, if your pup is prone to CC, watch for other mineralization symptoms.

I want to thank this forum for being my landing place when this journey started. For welcoming me, educating me, holding my hand through so many things, and for paying it forward. I don't think I can do that, but I have the utmost respect to those that do. This is not a nice disease.

Oh Renee.

I am so, so sorry for your loss. It is an absolutely terrible disease. Once you've had a dog with Cushings it's a constant terror that another one will get it. I don't think I could go through it again.

Tobey is at peace and I pray that you can find some as well. The sweet girl put up a good fight with her mom, she knew she was loved and she loved you.

I understand your need for the mental break. I've pulled back a bit myself on occasion. Thank you for returning to let us know about the mineralization.

I am so sorry for your loss.

Run free, sweet Tobey.

Dear Renee,

I have no words to express how much I feel for you. Tobey was such a special girl and a trooper the whole time she had to deal with this disease. She faced so much more than many of our babies are asked to and the two of you handled them all with grace and determination. You are a wonderful mom and the life you gave Tobey is more than proof of that fact. I know she left this life on the wings of your love and will carry that love with her thru all time.

Fly free, sweet Tobey, fly free.

Please know we are here for you always.
Our deepest sympathies,
Leslie, Sophie, Fox, Bud, and all our Angels

I'm Still Here

Friend, please don't mourn for me
I'm still here, though you don't see.
I'm right by your side each night and day
and within your heart I long to stay.

My body is gone but I'm always near.
I'm everything you feel, see or hear.
My spirit is free, but I'll never depart
as long as you keep me alive in your heart.

I'll never wander out of your sight-
I'm the brightest star on a summer night.
I'll never be beyond your reach-
I'm the warm moist sand when you're at the beach.

I'm the colorful leaves when fall comes around
and the pure white snow that blankets the ground.
I'm the beautiful flowers of which you're so fond,
The clear cool water in a quiet pond.

I'm the first bright blossom you'll see in the spring,
The first warm raindrop that April will bring.
I'm the first ray of light when the sun starts to shine,
and you'll see that the face in the moon is mine.

When you start thinking there's no one to love you,
you can talk to me through the Lord above you.
I'll whisper my answer through the leaves on the trees,
and you'll feel my presence in the soft summer breeze.

I'm the hot salty tears that flow when you weep
and the beautiful dreams that come while you sleep.
I'm the smile you see on a baby's face.
Just look for me, friend, I'm everyplace!

Author Unknown

Dear Renee,

Your post was the first one I read this morning, but it’s taken me all day to find the words to write. First off, thank you so much for coming back to let us know about Tobey. I have thought about you guys so often during this past year, and kept hoping that all was well. I’m so sorry to read about your loss. After how hard you both fought, you and Tobey deserved much more time together. But sadly that was not to be, and instead we come here to join you in honoring her courage amidst so many challenges.

We all learned so much through your journey together, and Tobey’s experiences will help us help more doggies to come. The dreaded CC can surely be a scourge. But thanks to you and Tobey, we’re now better armed to support and advise others who are suffering in the same way. You were both pioneers here on our forum, and shall not be forgotten.

I surely understand why it is hard for you to return here, Renee. But please know that you will always be welcomed should you choose to do so. You have been such a friend to us, and such a great help.

Always in loving memory of sweet Tobey, and always with my warmest regards to you.
Marianne

Oh Renee, I am so dang sorry to read about the passing of Tobey and what you and her went through towards the end.

Marianne made an excellent point, in that your journey with Tobey and the cc has helped us to help others so much and we often refer anyone with cc here to Tobeys thread. There is still so much we don't know and that I don't believe vets know, especially when it comes to the more obscure possibilities, like the cough. I don't think I would have thought to check the lungs for calcification/minimeralization as that's the first I've heard of it occurring in the lungs. Yet we should think that, we should think, cc can happen anywhere in the body And again, Tobey has taught us something that I would much rather she never had occasion to know or experience, before she left this earth.

As Marianne said, you will always be welcome here Renee and missed.

I am so very sorry to hear about Tobey.

FLY FREE TOBEY, FLY FREE!!!

Dearest Renee,

I am deeply sorry for the loss of your precious girl and my heart breaks with yours. It takes somebody special to make us care so deeply and Tobey sure was a special girl.

Although no words can help to ease the loss you bear, just know that you are very close in my thoughts and prayers.

With Heartfelt Sympathy, Lori