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

[Harley PoMMom]

Oh Renee, gosh I am sorry to hear that the CC has reared its ugly head :mad::(

I found these 2 articles referring to Minocycline: Regarding a dog with iatrognic hyperadrenocotricism -Minocycline for calsinous cutis and this one refers to humans: http://emedicine.medscape.com/article/1103137-treatment

Hugs, Lori

[molly muffin]

Oh dang Renee. I'm sorry those dratted cc spots are starting to break through. Maybe Tobey is one of those who has to a low post to keep them at bay, or maybe her body isn't processing calicum sufficiently. I don't know.
What did the vet say?

[scoora]

Sorry to hear that about the CC spots.
Hope you and the vet came up with a plan.

[Renee]

We talked about a few scenarios for Tobey's CC. I thought it possible that her cortrosyn has gone bad, for whatever reason, so we are dumping it and ordering a new bottle (cue my wallet crying). I'll have her stimmed when the new bottle comes in. It would explain a lot if that bottle was bad, given that her numbers have been so low, but absolutely zero outward symptoms of low cortisol.

The other thought is that she's been on a very low dose for the last 4-5 months really, and only once a day dosing for a while. It could be her cortisol is rebounding enough every evening that it is allowing the CC to progress. When I originally got her CC controlled, she was on twice daily dosing, at a fairly high dose.

My vet was very surprised at how all the old lesions have all erupted at the same time. :( She is looking into getting the minocycline, as she didn't feel it would cause any harm (although not certain how effective it will be), and she left a message to consult with a vet dermatologist.

Other than these issues, I think Tobey is doing well. Her demeanor is good. No digestion issues. No other pressing issues. Just this darn CC!

[scoora]

Glad Tobey's doing good otherwise.

Hope you can get it worked out.

[Renee]

I'm so mad and frustrated!! Another huge lesion busted through this morning. Her skin is literally splitting apart. It's been 2 years since I saw it like this.

I am more convinced than ever that we have been misreading her cortisol levels and she's been taking too low of a dose these past six months.

I will try and take some pictures tomorrow to update her thread.

UGH!

[labblab]

Renee, I'm so sorry and gosh, you may be absolutely right about this! Sending you both my healing wishes although I realize you are needing much more help than wishes alone. :o :(

Marianne

[Tina]

Oh Renee, I am so sorry too. I am not well versed on the cortrosyn since Jasper ended up getting toxic on Lysodren early on so we didn't do very many stim tests. But I remember mentioning to my vet in passing what I learned here about the process of storing and freezing the cortrosyn to help with the cost, and I remember she wasn't too keen on it. Something about needing to be very careful with the storage or there could be inaccuracies with the testing. So you may be absolutely correct about that.

Sending hugs and support. I am so sorry this is happening to your sweet girl. :(

[lulusmom]

Renee, I am really sorry that Tobey's CC has erupted again. I can only imagine how emotional it is to see this happening again. Your description of it breaks my heart. I wish I had some words of wisdom for you but cc is one of life's mysteries for me and apparently it remains one in the veterinary world as well. I've hit a wall in my research but have learned two very important new pieces of information, or at least they are new for me. 1. CC was thought to be pathognomonic of cushing's but it isn't. Fungal infections, hypoparathyroidism, renal failure and idiopathic have also been reported. 2. CC does not always resolve with successful treatment of cushing's.

Nobody I've ever seen on this site or any other has done as much as you've done for Tobey to try to combat and figure out a reason why this horrible consequence of cushing's has plagued her, despite evidence of excellent control of cortisol. I truly hope that your suspicions are correct but I think that unless your vet has really screwed up and not followed proper protocol for splitting and storing cortrosyn for future use, I'm not so sure the acth stimulation test results have been invalid. Do you know how your vet is splitting and storing the remaining cortrosyn?

Big Hugs to you, Renee, and cyber belly scritches to Tobey. I'll be anxiously awaiting your updates and sending positive thoughts your way.

Glynda

[Aunt Jana]

Renee--we are giving Bubbles Minocycline for her CC. 100 mg twice daily. It has been about two weeks. She is not on any Cushings meds. She is doing ok. None have erupted, the older sites are clearing, however, her newer eruptions are under her fur , big but not visible. I'm hoping those areas shrink. I'm just grateful my new vet is open to this. Give it a try! It's inexpensive.

[Renee]

Thanks everyone.

Glynda - I think we've read the same research on CC. I had her kidneys tested many times over the past few months, including the SDMA test. Everything has always come back normal. It's been quite a while since we checked thyroid, so I guess I can add that to the list of bloodwork to run. Problem is, she doesn't have many other symptoms at the moment. She does have mild PU/PD and of course hunger, but not like she was when her cushings was not controlled.

My vet follows Dr Peterson's protocols to the letter for diluting the cortrosyn. Tobey is her only cushings patient and the cortrosyn is purchased specifically for me. When the bottle arrives, they dilute it according to the blog post by Dr. Peterson. They even have the instructions printed and saved in Tobey's file. The only thing I wonder is if they are storing it in a frost free freezer, which the blog says may compromise it.

We are going to try the minocycline if we can find it in an appropriate dose. Since Tobey is only 17 pounds, we may have to get it compounded somewhere. I'm not super hopeful about it, but I don't think it will hurt anything to give it a try. Tobey's CC has never, ever been mild. It's either controlled, or gets very aggressive, very quickly. I need to find the underlying cause!

[Renee]

Just emailed Dr Bruyette. Hoping he has something helpful for me.

[lulusmom]

Renee, I don't know about your research but I have found it frustrating to pour through articles and studies hoping to find a tidbit that might shed some light on dogs like Tobey. Most reference material I've read identifies the actual cause which is too technical to remember and type here but the problem is that they don't know what causes the cause and without knowing that, there isn't a pill to fix whatever is going haywire in a dog's body. I think CC is the most confounding, annoying as hell and heartbreaking symptom of cushing's there is. I feel for you both and am pissed off for you that you are back in CC hell through no fault of your own.

I know you have left no stone unturned and my fear is that Tobey may be one of those dogs who may never see a complete resolution of CC despite even the most excellent control of cortisol. I know you well enough to know that you will never give up on your girl and neither will we. I'll keep digging and doing my best to find any new emerging developments on the CC front. In the meantime, I'm still good for lots of prayers and positive thoughts for you both.

(((Big Hugs)))
G.

[Harley PoMMom]

In the meantime, I'm still good for lots of prayers and positive thoughts for you both.

(((Big Hugs)))
G.

Me too, Renee (((HUGS)))

[Renee]

Another lesion cracked open last night. It is taking every single ounce of my will power not to immediately increase her vetoryl dose. I know I have to do it safely, but I just want this to stop before it gets as bad as it was when it first appeared.

I'm so mad! :mad:

[molly muffin]

Oh dang it! It is so frustrating to do everything right and textbook and still have these things popping out.
Okay throwing this in as a thought. Any chance these where there from previous times cortisol was higher and just for some strange reason her body is just now pushing them up and out?

[scoora]

Oh Renee,
How frustrating that CC is!
Hope it improves soon!

[DoxieMama]

Renee I am so sorry. I hope you can figure something out that will help soon.
Hugs!

[Renee]

Well, I had my little breakdown yesterday and I am feeling better now. I guess I just needed to cry it out for a second, I was so mad.

The vet derm called back. Unfortunately, she disappoints. She said not to bother with the minocycline and suggested I use DMSO. Wow. So, that tells me she did not even bother to do any current research on treatment for CC. I know people still use DMSO with varied success ... but, I expected more from her. I guess I need to keep in mind that CC is quite rare and most vets won't ever see it in practice. Thank goodness I didn't waste any money on a vet appointment. I gave DMSO a fair shake years ago and I will not touch it again.

My vet is open to whatever course of action I want to do, so I told her that I wanted to try the minocycline anyway. Tobey has never taken it, but she's taken doxycycline, so she has had abx in the same family before. I got myself a little scared when I read the side affects of the drug, but my husband told me to just try it. We started it last night. She's on 75mg twice per day.

The cortrosyn arrives today, so we are tentatively scheduled for a stim test tomorrow. I haven't heard back from Dr Bruyette, but I'm not really sure what I expect anyway.

So, for now, that is all I have.

[DoxieMama]

Crossing fingers and saying prayers that the minocycline helps, and that the results of the stim test give some clues as to what's going on.

More hugs for you!

[Trish]

How frustrating for you and little Tobey, so sorry to hear about this flare up and hoping the new drug does it's job... Fast!
Trish xx

[Renee]

Tobey had her stim test yesterday, using a brand new bottle of cortrosyn.

Baseline 5.9, post 6.6. She took her 5mg at 630am with breakfast and test was at 10am.

So, based on these results and her CC we are adding in 5mg in the evening. I think 10mg once per day brings her down too low, but she needs something to keep her cortisol low enough in the evenings too.

Hubby wants to run a stim test on her at night, to see how far she rebounds. I mean, it would be interesting, but there is no data / research to compare it to, in order to evaluate the results, so it would be a waste.

She has four open spots now. They are all still very hard, dry, crusty, and splitting, but none of them are raw and bloody yet. Hopefully we avoid that part.

[Aunt Jana]

Hi Renee:

Bubbles CC finally broke off literally! I feel so bad for her. There are pink areas, raw pink skin exposed! I am heartbroken. I am sorry for you too. Bubbles hasn't been on any Cushing med for the while, tomorrow we are starting her on Anipryl. Today we received the spray and wipes from Dechra. They seem to help a bit.
The vet did mention the Minocyclin will prevent infection too with the skin exposed..........I do an awful lot of crying. :(

Good luck to you and your sweetie.

Janet

[Renee]

Janet, I know exactly what stage Bubbles is at. Believe me. Tobey went through that stage. I have it documented in her album. It looks like skin that was raw and exposed from a burn. I actually think it feels better once those hard plates peel away from the skin and it's not pulling so tight, although it must hurt regardless. CC is probably one of the most difficult symptoms of cushings to watch. I had many days when we first went through it that brought me down. I had a good cry a few days ago, but I am determined to conquer this CC for a second time.

I am praying for Bubbles too. I know how difficult this is for you.

[Aunt Jana]

Thank you for the prayers. I feel so helpless, she has it on her lower back above her tail and about a half inch from her collar going down her back, looks like ripples--her fur is rippled looking but it's really hardened--horrible!! The other areas, they never got aggressive, the black zits just kind of dried up.

I am keeping you and Tobey in my thoughts and prayers as well.

Goodnight and take care.

[DoxieMama]

Renee, so those results are a little higher than with the other cortrosyn. Previously, did Tobey need the post result to be lower than 5.1 to alleviate the CC? I sure hope the extra dose at night will help.

[scoora]

Here's hoping the extra 5mg will do the trick and get that CC under control!

[molly muffin]

I think Tobey did need the post result to be under 5.ug to get the cc under control. Renee can correct me if I am wrong but I'm sure that was what was needed. It is something that we have seen with cc time and time again on the forum.

Does sound she'll need that extra 5 mg at night. I wonder if something was off on the previous bottle dosage or something.

[kanga]

Welcome to you and Tobey, I appreciate what you've done to help other dogs you're such a kind person i'm so glad you're here now.
Like Roxee Dad said you can find some helpful information here with the help of other member that have the same problem like your dog hope you find out soon. You are always in my thoughts I pray for her hope she will be treated soon.

[Renee]

Well, the dreaded sores are getting more red, which means we probably aren't going to avoid the bloody / raw stage. :mad: I haven't examined every single sore, but I would say she's up to about 5-6 that are all the way busted open, and numerous still under the skin. Like rocks. As they come open, they will connect with the lesions that are already open and just turn into one big mess.

I upped her dose last night, so she had 5mg last night.

Yes, in the past, we needed to bring her down to below 5 in order to control the CC. I suspect this CC has been brewing for months and months. She's been on and off her meds for a few different reasons since Christmas. Most notably in February when she had HGE and almost died.

I know we don't put much store into the baseline number, but it seems that Tobey's has been trending upwards these last few tests. Not sure if that means anything or not. Probably not, but something to note.

The price of cortrosyn has gone up. I went to pay for my bottle yesterday and it was $150 more than when I purchased it in December. The vet clinic didn't make me pay, since they agreed to look into the increase. The office manager called back today to tell me that their cost had gone up, but since I was buying my own bottle (and thus, saving them the waste), they would mark it down to $391. I love that they are willing to do this for me. Darn if that stuff is not liquid gold!

So, in the mean time, we wait and see how things progress. I'm not confident in avoiding the worst of the CC at this point, but hopeful we can get it nipped in a few months, rather than the original 6-8 months it took previously.

[lulusmom]

Wow, $391 for a vial of cortrosyn and your vet was giving you a break? How in the world are pet owners of big dogs, who need the entire vial per injection, going to afford a stim test? I do hope there was a terrible error on your vet's billing. I knew the stuff was expensive but that's ridiculous. Is your vet a specialist?

Tobey's resting cortisol could have been trending upwards because of increasing inflammation of this latest CC eruption. Who knows what was going on under her skin before it broke through. The active infection and Tobey's stress associated with this eruption could also be transiently increasing the post stimulated cortisol as well. I am hoping with everything in me that you can get Tobey's post stim well under 5 ug/dl and see some improvement in the CC. As a last resort, you could go to three times a day dosing. If that doesn't keep the CC at bay, I hate to say this but Tobey may be in that minority of dogs whose CC doesn't resolve with treatment.

With respect to your emails to Dr. Bruyette. I have an audio of one of his lectures on Cushing's and he is a big Vetoryl fan so of course, it's his first treatment of choice. However, he stated he did not have very good luck with seeing resolution of CC with Vetoryl. That was at least four or five years ago and I don't believe he even mentioned an alternative in that audio. In reality, I think the only alternative would by mitotane. If you write him again, you may want to ask him what his alternative is for those dogs and whether it was ultimately effective in resolving CC.

I am so terribly sorry that Tobey is plagued with CC and I can only imagine how awful it is for you to have to look at her angry, painful skin and not know how to make it go away and stay away. I am hoping and praying for a positive results with the extra 5 mg in the evening and will be looking for your updates.

Glynda

[Joan2517]

I'm so sorry too, Renee....poor Tobey.

[Renee]

In the past, a bottle of cortrosyn has run about $325, so they've only upped the charge to me by $66. I get five doses out of a bottle, following Dr Peterson's protocols. I purchase my own bottle, because then the vet can split it into the smaller doses. Since they do not have any other dogs that regularly need the cortrosyn, they only order it for me, which requires me to buy the entire thing up front. It's completely understandable. If I did not order it upfront, then they would be wasting it. When they order it for someone else, they usually mark it up a lot in order to recoup their loss on wasting it.

I think they are doing the best they can. I could look into getting it less expensive elsewhere, but .. at the same time, they are already discounting it for me, and they are very generous with Tobey in a lot of other ways.

I've given a lot of thought about whether vetoryl can control Tobey's CC. In the past, it was very successful. Now, of course, we are facing it once more. I've thought about switching to lysodren, but I want to see if I can have success again with the vetoryl. I don't want to go through a washout period at this point because I fear that an entire month of no treatment would have a disastrous affect on her CC.

[scoora]

Good luck with everything Renee. Hope it all works out.

[Renee]

Just a little update on my girl. The CC is slowing down. Definitely still working it's way out, but it's not moving as quickly / aggressively as it was. I think it's come far enough, though, that it will get worse before it gets better.

She's been getting her 5mg twice per day. We aren't scheduled for a stim test until next Friday (7/8).

I really hate that we had to increase her meds in order to control the CC, when I feel like all her other symptoms were resolved to my satisfaction. :mad:

[Renee]

Ugh, this CC. Never in a million years did I think we would see such a recurrence. It's not moving as aggressively, but it's all there and I think we will be going through all the stages of it. The fur is just starting to fall out and reveal the lesions underneath. Most of them are still dry, but a few are a bit bloody. I took a few pictures, but I want to have someone help me so I can get better pictures.

Should be getting her stim test this upcoming Friday. I hope I can get her cortisol below 5.

[Trish]

So sorry to read this Renee, I am sure hoping his stim is better but how frustrating for you and Tobey, heal quick wee girl xx

[Harley PoMMom]

Oh Renee, I am so sorry that you and Tobey are having to deal with that dreaded CC, you girls beat this before and I have every faith that you will beat it again.

Hugs, Lori

[Renee]

That's what I keep thinking Lori. We've beat it before, I hope we can beat it again. It's surreal to be going through it all over again. At least Tobey seems to be in much better spirits this time around since most of her other symptoms are well controlled.

[scoora]

Renee, So sorry Tobey has to deal with the CC again.
I'm confident you will get it back under control.

[molly muffin]

Oh dang it. How horrible for both of you to have to go through this again.
I wonder if cc is like a vipers that once it is ther in th body it can always come back. Not that cc is a virus we know it's not but just the return possibilities are always there.
Hoping for a good stim.

[Renee]

Hey everyone,

I find myself at a bit of a decision making dilemma.

Tobey has been on her 5mg twice per day dosing for the last 2 weeks. Normally, I would run a stim test this Friday. However, as it has only been 2 weeks, I don't think I would want to increase her dose ... which leads me to wonder if I should bother with the stim test? She's not over-suppressed, so I'm not worried about that.

However, given the severity of her CC (it's been getting worse, as expected), I need to know where her cortisol is to keep tight control. I know if it was above 5 ug/dl, I would want to increase her again, as soon as I could.

Ugh.

The CC is still spreading. Most of it is fairly dry still although we have some patches that are entering the bloody stage.

She finished the minocycline. I don't know if it had any impact, so I'm at an impasse about refilling it or tabling it.

Thoughts?

[Joan2517]

Lena never had CC, so we never had to deal with it, but it sounds like you do want to know where her cortisol is at...poor Tobey. Such a crappy disease.

[molly muffin]

What about at 3 weeks instead of 2? sort of put it in the middle between the 2 and 4 week?

I've done that since sometimes it just doesn't work out to go at 2 weeks as far as time off work.

[Renee]

Yes, Sharlene, I decided to do a 3 week test.

Also, I just uploaded another 7-8 pictures of Tobey's CC over the past few weeks. I need to take some from the past few days.

[Renee]

Just a quick update.

Stim test from 7/15: Baseline 4.3, post 5.1. This is on 5mg BID. We are staying with the dose for now. I'll probably recheck in a few weeks.

Her CC is pretty much the same, a little worse perhaps. It's hard to see it through her hair, and unlike last time, I have not clipped it down yet. She doesn't want to be messed with either, so I've been trying to leave them alone. I do want to do that, but my daughter is having senior pictures on Monday and really wants Tobey to be in them, so I want to wait until she gets through that.

Other symptoms are showing good control. We took Tobey on a little camping trip over the weekend, and although I was super nervous, she seemed to really love being outside and sniffing so many new things. She didn't shut down at all. :) I get so protective and cautious that I forget that she probably likes to have new experiences.

[Renee]

You guys! Exciting news! We are finally getting an IMS up here!

We had one years ago, but I wasn't a fan of her, and it wasn't worth seeing her at the time. She ended up leaving state shortly after anyway.

Well, one of the vet clinics in town (pet emergency) is getting an IMS on rotation. He will be here one or two weeks per month.

YAY! I have a call in to my regular vet to call over and get on his schedule. I really, really want to see what his feedback is for Tobey's coughing and her CC.

[molly muffin]

That is great news Renee!!

I'd love to hear what he thinks too.

[DoxieMama]

Woot!!

How'd those senior pictures turn out? :)

[Harley PoMMom]

That is awesome!!!

[Squirt's Mom]

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

[Renee]

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.

[Renee]

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.

[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. :)

[Joan2517]

Glad to hear....

[Squirt's Mom]

You're such a good mom!

[molly muffin]

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.

:)

[Margie Bell]

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

[Renee]

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!

[Margie Bell]

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. :)

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

[Renee]

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.

[Margie Bell]

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

[Renee]

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.

[Rolly]

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.

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

[Renee]

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.

[molly muffin]

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. :)

[Renee]

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.
---

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?

[Harley PoMMom]

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!!!!!

[DoxieMama]

Yay for tight clinical and symptom control!!

[Squirt's Mom]

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.

[molly muffin]

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

http://www.yorkietalk.com/forums/yorkie-health-diet/256995-got-collapsing-trachea-problem-news.html

Great numbers Renee!

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

[scoora]

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.

[labblab]

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

[skinnybonedog]

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.

[Renee]

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.

[Joan2517]

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.

[DoxieMama]

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.

[Squirt's Mom]

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

[labblab]

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

[molly muffin]

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.

[Budsters Mom]

I am so very sorry to hear about Tobey.

FLY FREE TOBEY, FLY FREE!!!

[Harley PoMMom]

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