Miss Millie Mayhem (Eng Bulldog) - NEW Dx: Cushings PDH and AWFUL Calcinosis Cutis

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Vet called...Just got the results back from her 11 day ACTH test following Millie's start on Trilostane. For reference I am posting the ACTH results pre-treatment as well:

Pre-Treatment:
Cortisol Sample 1: 2.1 ug/dL
Cortisol Sample 2: 8.5 ug/dL

11 Day ACTH:
Cortisol Sample 1: 0.8 ug/dL
Cortisol Sample 2: 5.0 ug/dL

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Do you have the lab's reference range for the pre ACTH test?
I am no expert but something is off somehow. Is that the original ACTH test to diagnosis is inclusive as it shows normal cortisol?

Coritsol sample one after 11 days is pretty low. Dechra prefers it not go below 1.45ug/dl.
Cortisol sample 2 is fine.

I am sure one of the administrators will stop by with thoughts.

Oh no, that's what I thought. Now I am so worried...just called Dechra..:confused::confused::confused:

Yup call Dechra and check, I could be wrong, I am at work.

Wish I could help with numbers...but I'm no expert. Just posting to say I hope all is okay with Millie and that you're able to find out about this result today.
Barbara

Interpreting acth tests goes along with symptoms and history. I may just be nervous of a .8 pre after 11 days of dosing. What I don’t understand is the pre treatment numbers.
I’ll bump this up.

Thx addy... Would it be helpful if I emailed the actual test result papers so they can be uploaded? Should I send all as one file if so?

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Originally Posted by addy

Interpreting acth tests goes along with symptoms and history. I may just be nervous of a .8 pre after 11 days of dosing. What I don’t understand is the pre treatment numbers.
I’ll bump this up.

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I was a bit baffled about those pre treatment ACTH results but Marianne had explained it well in the quote below:

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Originally Posted by labblab

Hello and welcome from me! Thought I'd go ahead and throw my thoughts into the ring, too. ;)

This is just my personal opinion, but I do believe that Millie's list of classic Cushing's symptoms, the calcinosis cutis, and the positive LDDS all "trump" the ACTH and point to a genuine Cushing's diagnosis. Even though the ACTH is less prone to "false positives" than is the LDDS, it is far more prone to "false negatives," especially for dogs having the adrenal form of the disease. So in a situation such as this, where Millie is so symptomatic but has turned up with a negative on the ACTH, the recommended protocol would indeed be to turn to the LDDS for further confirmation. The abundance of false negatives on the ACTH is probably the main reason why many specialists discount the ACTH as the initial Cushing's testing tool, although I do believe there are situations where the ACTH has a testing advantage (but I won't bore you with an explanation here).

On their own, Millie's LDDS results do not distinguish between the pituitary and adrenal forms of the disease. But her ultrasound is consistent with PDH since both adrenals were enlarged. So if it were me, I would feel as though your vets are making the right decision in pushing ahead with treatment given Millie's entire symptom and testing profile.

One quick question for you: you mention that she is also taking phenobarb. Does she have a seizure disorder? I will come back and add another reply about the phenobarb, but it may end up having an effect on the trilostane dosing down the road.

Marianne

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With Millie's recent ACTH results I hope that the dose of Trilostane was not increased because the numbers can continue to decline.

Hello again, and darn! I'm sorry there's any question at all about those ACTH results. But I'm glad you're contacting Dechra because I'd like to get their "take" on things, especially given the fact that Millie is also taking phenobarb. I think I wrote earlier that a Dechra technical rep had warned me in the past that trilo dosages may need to be adjusted due to phenobarb's effect on the liver and therefore the way in which other drugs may end up being metabolized. So do be sure to mention the phenobarb to them.

We never used to worry very much about the "pre" ACTH number, but it does seem as though Dechra is not happy about results that drop below 1.45 ug/dl on either the pre or the post. So I'd welcome their input. With a "post" of 5.0 and electrolytes within range, I don't think Millie is in any immediate danger of oversuppression, but Dechra may advise you back off on the trilo dose somewhat. Which I realize will be disappointing since you are not seeing much improvement thus far. I do have to warn you that issues with the skin and muscle wasting can take weeks to improve -- not just days :o. So even when trilo is at a therapeutic dose, it is usually the thirst, urination and hunger that improve before the rest. Since excessive thirst and urination can also be a side effect of phenobarb, I'm still wondering whether that can be confounding her symptom pattern at all. But I think you told us earlier that she had not had those issues while taking phenobarb before her diagnosis, so I guess that's probably a dead end.

It is certainly true that Millie's diagnostic ACTH remains a bit of a puzzle in that it was so far below the level associated with a Cushing's diagnosis. I was kinda hoping that everything would go swimmingly with the trilostane and you'd be seeing symptom improvement such that we'd feel as though we had additional confirmation that we're totally on the right track. And maybe with just a bit more dose tweaking, that will still be the case. But regardless, I'm really glad you're consulting Dechra and I'll be very interested in what they advise you to do in moving forward.

Marianne

You said you called Dechra? What did they say?

Sometimes when the pre number is on the low end, they will recommend, lowering the dosage, so as to have no risk of over suppressing. Personally I don't like that pre number being that low since cortisol levels can continue to drop even up to and sometimes beyond 30 days. Since her cortisol wasn't particularly high to begin with, I'd like the pre number around the Dechra recommended range of as Addy mentioned 1.45. With the post number around 3. - 5. if I had a preference. I seldom get exactly when I want especially with little ones with a mind of their own. That is just my own personal thought on the numbers. I'm sure some of the administrators who have a vast amount of experience will chip in with their thoughts.

Don't be discouraged by not having symptoms of cc cleared up yet. That along with muscle weakness can take the longest to clear. Months even. So hang in there.

Hang in there!!!
hugs,
Sharlene and Molly Muffin

I see Marianne and I were typing at the same time. :) Glad she saw this and was able to respond.
I agree, it would be great to know what Dechra's interpretation is, especially in relationship to the phenobarb

hugs,
Sharlene and Molly Muffin

Hi all! And thanks for your encouragement and guidance - I just hate that my girl is going through all of this!

Update – Called Dechra,

So I called Dechra and spent about 30 minutes on the phone with one of their “techs“ (she even reached out to one of their on-staff Doctors to confirm a question I had about her Chloride level that she wanted to make sure she got additional input on!). She started a case for Miss Millie and now has all of her medications, notes on test performed, dermatology specialist contact info, general vet contact info, and notes on our discussion. So here are some of the key points I learned in my most non-technical understanding

1 – as it relates to her taking phenobarbital, she doesn’t feel that there will be much impact, however, for Cushing dogs that did show more of the elevated cortisol levels, sometimes reducing those levels can cause seizures to come back (cortisol can sometimes help suppress seizures with the phenobarb). Because Millie was not significantly high to begin with, the drop will probably not impact her tendency for small seizures.

2 – As it relates to checking electrolytes, I learned the following…when treating dog, one thing that they look at it through electrolyte testing that causes a warning flag to be raised is if Sodium decreases and Potassium increases (if Chloride tested, if that decreases is looked at). This can be compared to previous electrolyte test and the ratio of sodium/potassium (Na/K) can also be compared. If ratio goes down (meaning sodium is going down and potassium is going up), that is something to keep an eye on and can (I believe) be a warning that dog is trending toward an Addisonian state (which is life threatening)

3 – Millie’s ACTH baseline 11 days after Trilostane treatment was 0.8 and post ACTH was 5.0 (this baseline is considered low for a dog being treated – they do not like to see lower than 1.45 for pre or post ACTH), however, given Millie’s other testing, she was not overly surprised by this as her first ACTH test she really presented within normal ranges and hence the test was ruled inconclusive. She did say 0.8 would be in the normal range for a “normal” dog not being treated for Cushings. She said unfortunately, Millie is not a textbook Cushings Dog when it comes to the testing results, but all of her clinical signs and some testing signs certainly indicate Cushings.

I will be contacting my vet tomorrow as she did say that it is highly recommended given the results that Millie return for another ACTH test in 2 weeks and that she be monitored well in those two weeks. Any adjustments to dosing could take place then...as for now - no change (especially because I have the good fortune to really monitor her since I work from a home office - the Dechra Rep did state that she would be more concerned with someone who did not have the ability to be so vigilant). She also said she would be calling me to follow-up soon thereafter (was amazed to hear that and very appreciative). Just another voice that can help me be more educated managing this awful disease.

I know many of you were interested in how the call went, so I tried to learn as much as I could while I had her on the phone!

Thanks for all the encouragement as this is SOOOO frustrating as I just want a magic pill...make that 2...one for Millie and one for me. I honestly think I have gained 10 lbs in the past 3 weeks cause I can't stop popping M&M's in my mouth as a stress reliever! I fear stepping on the scale!

xoxox,
Kerry (Millie's Mama)

It sounds like you had a good call with Dechra. It is great that they will be calling you back to check on her. I agree if you weren't working from home it would be more risky than since you are and are able to keep an eye on her.

Sounds like you found a pill for you (m&m) just not the right one maybe. LOL Stay away from the scale!!

Just watch her and if anything looks off, back for an ACTH and elctrolyte test. :)

You're doing great!
hugs,
Sharlene and Molly muffin

I am so glad you called. :):):)

It sounds like a good conversation. Great job , Mom:):)

Thanks Addy and Sharlene,

FYI, I have finally gotten up the courage to post my girls journey thus far with Calcinosis Cutis. It is AWFUL, but I figure if anyone else is out there needing to see pics, this may help (please let others know if you come across anyone struggling with this). I know I always wanted pics to look at to see if there were any similarities.


http://www.k9cushings.com/forum/album.php?albumid=704

xoxox,
Kerry

I know it was hard for you to post the pictures but it may help someone else, you are so right. Zoe's hair loss was down her back through the spine area as well, almost the exact spots. Her cc did not progress to what Miss Millie's did. She just has the hyper pigmentation and small hard pimples looking bumps and on top of that she got brownish oily spots with scales and it looked like crusty spots, hard to explain. Zoe had two surgeries as well so was shaved in two different spots, that did not help her either. Then the back feet and legs got bad after the last surgery,they had also shaved her thighs, her butt, etc.

The pictures I posted last year of her hair loss are nothing compared to how she looked in March and April after her surgery.

Miss Millie's came on so fast, from one spot. In the last photo, her skin is not as red and angry looking.

I know how hard it is. You have a beloved pup with a beautiful coat and all of a sudden they look so painful and we just want to make them better as fast as we can.

Keep the faith, sweetie. It is what we all must do:):)

Thanks addy! It is hard to keep the tears back and was hard for me to post those pictures. I appreciate the words of encouragement... Definitely helps!

Xoxox,
Kerry

A belated welcome from me and Alivia. A lot of our dogs here have had difficult skin problems. Alivia's were much more worrisome to me than her Cushing's symptoms. Her backend looked awful for awhile and broke my heart just looking at it. I totally understand what you mean when you say you wish she could tell you what helped her and what caused more discomfort. It was very brave of you to post Millie's pictures. We all learn from each other. I so hope you are able to find what works for Millie and that your beautiful girl recovers quickly. You obviously are doing everything in your power to help her. She is lucky to have you.

Hang in there.

Kerry, you were so brave posting those photos. :o You love Millie so much that you were willing to do anything to help her. We totally understand and are right there with you. It is okay to cry, to meltdown, or start to crumble. It is perfectly understandable. This forum has picked me up and dusted me off a few dozen times after I have hit bottom. We are here for Kerry. Even if you don't feel like talking. Post a message that you're there, and we'll send you tons of love. Xxxxxx

Hi Kerry,

I am so sorry Miss Millie is having skin issues :( and I hope that it will soon improve, this Cushing's is a dratted disease.:mad:

It is so very hard to see them not feeling well, and we so do understand how you feel...we are here for you both.

Thanks so much for posting the conversation you had with Dechra, I am always so interested in what they have to say and what they recommend, so Thanks again.

Love and hugs, Lori

Amazing that it progressed that fast in 5 weeks. I do agree with Addy that it doesn't look as red in the last or first photo of 5 weeks. I don't know if that is the angle or what though. What do you think? to me it doesn't.
What did it first start out as? that first bump? small white, or a sore type of spot?
It really can take awhile for the cc to resolve. The idea, seems to be that the cortisol levels need to be low enough that she isn't having any kind of build up in her system, allowing calcium deposits to go away.
It is a bugger, but I do think you are on the right track here. Just a matter of keeping an eye on her so she doesn't go too low. You didn't start out with any high numbers, so that is real important. Give it time! patience grasshopper! LOL
Posting the pictures is a very good thing though. Thank you!

hugs,
Sharlene and molly muffin

Kerry, the pictures made me cry. I'm so sorry for Miss Mille and for you my dear. You are doing everything you can and she knows how much you love her. Is this painful? Peety was sore in the beginning and he just didn't want me to touch him. In the beginning I would hold him and cry as I "promised" him I would make it better. The one thing I relied on and still do to keep the infections down was the Hibiclens. And now he loves his baths, every other day. We are not healed but he is not in distress anymore.

Her beauty will always be in your eyes, no matter what and you have the ability to see past the disease and into her beautiful soul. Thanks for posting the pictures, it will help others see CC for what it is. And your lil Miss Mille is such a sweetheart. Sending prayers for healing and strength. Give Miss Mille a big hug from me and Peety and tell her that Peety says "Hang in there Miss America, it's gonna get better."

All the best, Pat and Peety

Hi Kerry,

You have had great advice from Dechra with regards to the ACTH stim test results. As I have said earlier ... things do not happen quickly with the healing of the calcinosis cutis and in fact it can get worse before it gets better. I do recall with Sabre that things happened fast from the point of seeing spots to him losing his hair ... in the same areas as Millie.

Take care
Angela and Flynn

Good Morning Millie and Kerry,

New day dawning, hope it is a good one for both of you.:):):)

One good thing a day always helps to keep up the confidence:):)

Sloppy hugs and kisses to Millie and big hugs to you.

Hi All,

Thanks so much for your continued encouragement and putting me in my place (in oh so kind of a manner!) when it comes to the progress I want to see NOW. I did send pictures of Millie to our Derm Vet and she actually said she thought everything was looking great…me, dumbfounded, yes! She was happy to see a lot of the scabbing going away and we go back to visit her in about a week.

Noticed today that the edges of her ear flaps were a bit crusty/hard and am wondering if that is part of the CC. Of course, sent off another email to the Derm Vet on that. I am breathing a little easier today, and shared with Marianne my one other piece of excitement which y’all may laugh at…Miss Millie kicked her hind legs after she pooped…woo-hoo…she always did this before this dreaded Disease took over, and I was happy to see her even get her legs lightly in the air. Never thought I would be getting excited about that, but I will take it…so mantra of the day…Patience, Patience, and more Patience...and yes Sharlene...Patience Grasshopper (that made me laugh)!

I am glad I shared the pictures and as awful as they are, I hope others who experience the same journey will be able to see just how bad it can get….I know those of you have dealt also with CC and I have looked at your pics, it is just heartbreaking, yet on the flip side is encouraging to find out it can get under control! It did start as just one little oozing sore on her neck and within 3 weeks BAM - total mess! My Little Miss America will prevail (and yes there is a story behind “Miss America”!) 

Thank you all so much - so lucky to have you all here!
xoxox,
Kerry

DOUBLE YAY!!!!!!!!!!! See, Addy, Kerry has posted TWO good things for the day: good derm report, and stamping like a bull after pooping!! :p :p :) :) :)

Yes, it is a good day! ;)

Marianne

Hahahah, I call that the Kick Off! I love it when they do that and then tear of running. You can tell they feel a whole lot better. Molly walks slow and funny when she has to take a poop, but once it's over, she's legs going and tearing off. I'm so glad that Millie is able to do that again! It just is one of those big smile things. LOL

Okay, was it a hard white bump before it oozed? or just it was an oozing sore. I'm going to learn plenty about cc one way or another :)

You are having a good day! yay!
You know one of our members has been away for a bit and came back and she said, when you are there, every day, looking at what is going on, it is hard to see the slow changes for the better. Go away and then come back after a week or so and you'll know that the changes have occured. Not that I want you to go away for a week! But it is harder to see what might be improving when you are seeing it all the time constantly. So....
having said that....

What about taking just a bit of video a day on the camera. Then at the end of every week, you can review the weeks changes and see if you notice anything that way. Just a thought, not sure if it would work or not, but worth a try and might be interesting for you too.

huggers
Sharlene and Molly Muffin

Love the Derm report. As far as stamping like a bull after pooping, we've all been there!:D Hey whatever it takes! Sending you both tons of love and healing energy. You're doing a great job Kerry, keep it up!:)

Hi Kerry and Millie,

Lucy and I are also fighting the calcinosis and so I have been interested in reading your journey.

Thank you for taking the time to post, you never know how many people it may help.

Millie is totally Miss America to me, especially now that I know her about her "talent" performance (the backwards bull stamp with a flourish).

Shelly and Lucy

Hi Kerry!
Saw you had posted on Lucy's thread. Wow, what a week you must be having. Hope it gets better and the bleeding stops. They do say, it gets worse, then it gets better. So, I am hoping this is the worst and the next step is the "get better" part. Millie must be going crazy sometimes. You are so good with her. :)

Hugs!
Sharlene and Molly Muffin

I will be posting this on four members' threads, all of whom are dealing with calcinosis cutis. Kerry, Millie's Mama; Crystal, Annabelle's Mama; Shelly, Lucy's Mama and Pat, Peety's Mama.

I've seen too many dogs on Trilostane who have either had little to no effect on Calcinosis Cutis or a worsening effect while on the drug. Based on the frequency with which we've seen calcinosis cutis on this forum, there seems to be a correlation with the increased popularity of Trilostane for treatment of cushing's. I've had a gut feeling for a very long time that Trilostane is responsible for worsening calcinosis cutis due to it's effects on the sex hormones. Dr. Oliver, was the leading expert on adrenal steroids and he firmly believed that 11-deoxycortisol levels build-up in dogs being treated with Trilostane as did other intermediate steroid such as androstenedione, 17-hydroxyprogesterone, estradiol and progesterone. I've never been able to find anything in layman's terms that explains the affect, if any, these steroids have on calcium metabolism. While searching for that connection, I stumbled upon something even better. It was an abstract of a study entitled, "Canine hyperadrenocorticism: effects of trilostane on parathyroid hormone, calcium and phosphate concentrations". The last sentence of that abstract was eye opening.

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[B]Despite no significant difference between calcium concentrations in the pretreatment HAC and control groups, calcium concentrations increased significantly with treatment....and....These results show that adrenal secondary hyperparathyroidism resolves with treatment and suggest that increased calcium and phosphate levels have a role in its pathogenesis./B]

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It looks to me that cortisol isn't the only adrenal steroid that can cause elevations in blood calcium levels. Dr. David Bruyette, a renown endocrine expert, readily admits that he has had bad luck in resolving cc with trilostane. That's pretty telling coming from a high profile specialist who is a contributor to Dechra's continuing education program for veterinarians. This is not a new study. As a matter of fact, I believe it may have been published before Vetoryl was approved by the FDA.

You can find the complete abstract here: http://onlinelibrary.wiley.com/doi/1...283.x/abstract

I'm just sharing my thoughts with those of you who may want to start asking more questions of your vets....or you may even consider calling Dechra, the manufacture of Vetoryl (Trilostane). I'd be very interested to hear what they have to say about this study.

Glynda

Good job Glynda! What you say makes totally good sense... for those of you who are new to the disease - 8-10 yrs ago trilostane was not legal in the US.. lysodren was the sole drug of choice really... and we never saw cc. All of a sudden it seems like it's everywhere. And you are right - the majority are with dogs using trilostane. Thanks for all the research you do. Kim

Kerry,
Glad to hear the derm vet is happy with Millie's progress, that's great news. It is hard to have patience when you just want your pup back to normal. I have trouble waiting for symptoms to abate..have to constantly remind myself too..all in good time! Millie just has such expression on her face in her photos. I hope she's feeling better and that her skin issues will soon clear up. :p

Barbara

For folks who want to share general thoughts and comments about this study that Glynda has found, I've created a new thread in which our comments can be consolidated all in one place:

http://www.k9cushings.com/forum/showthread.php?t=5509

Marianne

Just checking in! Have had to travel for work this past week, and husband has taken care of Miss Millie…she had her dermatology appointment on Friday, and the dermatologist said she looks amazing…really??? I think she looks terrible, but I guess it is all relative and since the Derm had not seen her for a few weeks, she could see the progress that I do not see day by day. I am taking Sharlene's advice (thanks!) and taking pics just once a week and will compare week by week. The Derm was also open to seeing how coconut oil may help and we will use it on just her cheeks and see if any improvement. Millie goes in for her next ACTH test on Tuesday, so given her non-standard test results previously, I am interested to see how she is doing this time…making sure Cortisol not too low. She's been on Trilo for 22 Days now, and still a little slow, but taking things day by day... I have to also understand she is a 10 Year old English Bulldog so I shouldn't expect her to start galloping around the yard!

Most messy thing now is she may just start randomly bleeding from something as small as a pore and then it just bleeds and bleeds. In my next post, I am going to do my best to explicit detail her CC from start to today....so many details that I want others who may be new to this to read - I know I always wondered what next? How do I know if it's getting any better? What products are being used? etc...

xoxox to all!
Kerry (Millie's Mama)

Hi Kerry, I am so glad that your Derm Dr thinks Millie is improving. Like you I see Peety everyday and I use to wonder if he was actually improving. But I know he is. He has no sores now, he has two places that are hard black skin but the hair is growing there. Occasionally when I bath him (every other day) when I rub the black part it will sometimes bleed a bit. I put some Neosporin on it and that is all that I ever see. I don't know what is under the black, it is not like a scab just black hard skin. :eek: :eek:
I am the exception to the rule in that he is not Cushing's and he is not on any meds. So his CC most likely came from the prednisone and now that he is off of it I am not seeing anything new and what he has is very slow at going away. He is not interested in it anymore either. No scratching. Which is good. To see him now you would not really see the skin issues because they are almost hidden again by the regrowth of hair. But in the beginning he did have the pimplely lil wart like bumps that easily bled. I dealt with open sores for a few months and I was always scared of infections. After my Derm Dr. tried to put him on DMSO I just started reading everything I could to find what worked for others. Someone suggested Hibiclens and to me that was the one thing I had the most confidence in because of the medicinal qualities. I did the Hibiclens every day at first. Neosporin for sores and then I started taking him to the beach or making salt baths to put him in. Then I did the Manuka honey when the sores were sores and now that there are no sores I just use the coconut oil after his bath with Hibiclens. I shed a lot of tears over this. I honestly did not know if anything would ever work. At first he was so sore and raw that I put pants on him and long sleeved shirts just to keep him covered. I will see if I can post his "first day of school" photos. He looked pretty pitiful but I was trying to keep the sores covered as much as I could. I am so sorry for those that are dealing with Cushing's and CC. But this is the best place to be. I think there is more knowledge here than any of the previous Vets I went to. Hang in there. If I think of anything else I have experienced I will post it. Sending big hugs to you and Millie. Pat and Peety

Kerry,
Just dropping in to give you a great big hug and Millie a nice tummy rub. You are doing a awesome job taking care of her skin issues and it can't be easy. Xxxxxx

Good idea to document it all. I use Molly's thread to keep track of what is going on with her. I can go back and look to see what I thought something was on any given day. If there isn't much change, then I just do the stories of life with her, but recently I went back to see what I thought about a couple bumps on her and I'd forgotten about a bump that I now can't even find. So that is another way to keep track of things too (using the thread). Plus the pictures of course.
hugs,
Sharlene and Molly Muffin

Kerry, I learned to document EVERYTHING! You never know what might end up being important. Documentation helps you to see any patterns that may be forming. You are doing great! Xxxxx

My little boxer girl Ruby has the calsinosis just as bad as your Miss Milly. I am trying to figure out ho to navigate this site but finding it a bit difficult. I am now using only diaper cream as nothing has worked.
How have you made out , please reply.
Sandra

Hi Kerry, yes indeed it is about time for an update on Miss Millie. :) How is she doing?
hugs,
Sharlene and Molly Muffin