Margie Bell's Journey is now over - Margie has passed

[Margie Bell]

I have an almost 9 year old Frenchie who has recently been diagnosed with Cushings. She just finished the first week of trilostane and we are due today for the first blood test of which may be many to determine the correct amount she will need to get her Cushings under control.

I think we have been dealing with this for over a year now. Last summer she suddenly became lame and could barely walk. She could not go on walks or go up and down steps without pausing for breaks after only going a few feet. When we took her to the vet, because she's a frenchie they wanted to do an MRI which showed a swollen shoulder and recommend surgery. Thousands of dollars later it turned out that she had inflammation in her shoulder muscle.

Put her on routine antibio meds after the surgery and she seemed to get better. After about 2 months however, she relapsed and seemed worse than before. Vet decided to put her on three different antibio meds twice a day and she did get better. She's walking without the stroller and playing with Nellie again. By the way, her neck hair never grew back from the original surgery in December 2015.(see her pic)

Then this summer the excessive drinking began followed by trembling by the mid summer. No accidents in the house (dog door). Took her to my general practitioner and they did a senior wellness exam which included blood work that came back showing either Diabetes Insipidous or Cushings. Took her to a specialist and Cushings was confirmed.

Meanwhile she developed what I thought was hives, oh yes Margaret had chronic environmental allergies for which she recieves shots every 10 days and is on Apoquel (about a year now). The doggie dermatologist immediately informed me that it's not hives, but appears to Calcioucious Cutis? Which is an indication of Cushings Disease. Didn't do the actual $400 biopsy because we decided to wait on the results from the internist and when I showed him the type of blood results we were waiting on, he said that it looked like Cushiness is probably the diagnosis and that there is really nothing you can do about the Calciousious Cutis except keep it clean and uninfected.

On our way to vet today to get our first blood test after a week of trilostane. She still has her hair, but she has three welts on each side of her abdomen that sort of look like ribs. Neck hair never grew back after surgery.

Margie Bell's Mom

[Harley PoMMom]

Hi and welcome to you and Margie Bell!

AWWWW she is such a pretty girl! In order for us to provide you with our best possible feedback we need to know more about your precious girl, so I have some questions for ya ;)

What dose of Trilostane is she taking and how much does she weigh? Could you get copies of all the tests that were done on Margie Bell and post those values that are marked abnormal along with the reference ranges? Do the shots she receives for the allergies have a steroid in them?

If she does have Calcioucious Cutis (CC) there are things one can do that can help BUT a biopsy should be done to confirm it. One of our members, Renee, is our resident expert on CC and she sure can offer you some excellent advice in dealing with that CC. I'm sure she will be along shortly but in the meantime I'm providing a link to her thread: http://www.k9cushings.com/forum/showthread.php?t=5908

I sure am sorry for the reasons that brought you here but so glad you found us and we will help in any way we can.

Hugs, Lori

[judymaggie]

Hi! Just checking on how Margie Bell is doing and whether you got the results of the blood work (ACTH?) done on the 20th. Please let us know if she is okay -- we are definitely worry-warts and are concerned when we don't hear from one of our family members.

[Margie Bell]

Hi Lori, :)

Thanks for your concern. I'm a middle school teacher and the year has just begun so I've been busy with adjusting to going back to work and getting my own kids back in school. I'm up at 3am because I can't sleep. Thinking about Margie Bell. She has gotten up twice tonight for water and bathroom. It had sort of tapered off. For the past week she has been able to make it through the night without getting up, but tonight she did it twice.

I'm wondering is it because she had her medication about an hour and a half later last night(back to school night)than usual? (Home late) When she comes back in from urinating, she's trembling and panting and very clingy for the first 5 minutes or so.

However, last night she slept very calmly because my husband accidentally gave her a half pill of tramadol pain med! :eek:Needless to say I freaked out raced home, called the vet to see if I could still give the trilostane and they said it would be fine. But by then it was 8pm and I usually give it around 7pm

Her August 12 results were as follows:
Weight: 23 lbs.
Cortisol Sample 1. 6.6
Cortisol Sample 2 Dex. 3.5
Cortisol Sample 3 Dex. 2.9

Allergy shots are non steroids, although I do still have Apoquel. Haven't given it since the diagnosis. Should I cease it altogether?
She is on Trilostane. 10mg capsules town in morning & one in evening for a total of 30mg daily.

Since the first test, she had an additional test the following week that did not show much change so her dosage has increased to two capsules in the morning & one in the evening.

She goes in for her third test Saturday, September 3.
Since the increase in dosage, there has been less water drinking.

The Calciousious Cutis seems to be getting worse though. She hasn't had much hair loss, it's just kind of funky looking and hard-shell like- on the sides of her abdomen and I can see the redness starting to form along her neck where she was shaved for the surgery last December.
There's also this trembling especially when she is sleeping and some panting. Is she is pain I wonder? :confused:

~Pam (Margie Bells Mom)

[Margie Bell]

Hi there everyone,

I'm new to this and was wondering what you mean by compounded Vitroyl? I'm definitely interested in cutting costs. Waiting results from latest blood test. The cost for the box of 10mg capsules is $72. It only contains 30 Pills.

Margie Bells Mom, Pam

[Harley PoMMom]

Hi Pam,

I've taken the liberty and moved your post inquiring about compounding Margie Bell's dose, in this way all information regarding your sweet girl is in one place. ;)

Compounding means that a pharmacist, combines, mixes, or alters ingredients of a drug to create a medication tailored to the needs of an individual patient.

Just to clarify a bit, a compounded medication is totally different than a generic version. Trilostane is the active chemical ingredient in the brandname product, Vetoryl. A compounding pharmacy can purchase the chemical (and in this case Trilostane) made by whomever they choose and can change suppliers at any time. And compounded Trilostane can only be prepared in dosage strengths that are not available in brandname Vetoryl, so if a 10 mg dosage strength of Vetoryl is being used and a compounded version is wanted, the compounding pharmacy will have to make that dosage strength in either 9 mg or 11 mg.

Now, many of our members through the years have been quite satisfied with compounded Trilostane, and in situations where cost makes Vetoryl a hardship or where an appropriate dose simply is not available, I think compounding serves an essential purpose. Diamondback Drugs in Arizona is one commonly used provider among our members. Here's their link: http://www.diamondbackdrugs.com/

I'm including links to a couple threads where compounding Trilostane is discussed: http://www.k9cushings.com/forum/showthread.php?t=4592&highlight=compounding+pharmacy

http://www.k9cushings.com/forum/showthread.php?t=385&highlight=compounding+pharmacy


Hope that helps ;)

Lori

[labblab]

Just wanted to add that, even if your vet wants you to stick with brandname Vetoryl, reliable internet veterinary pharmacies are offering 30-count boxes of 10 mg. capsules for as low as $42. You do have to be careful as to which pharmacy you buy from in order to make sure you are getting the genuine medication, but we can give you tips about that.

If you are currently buying from your vet, he/she may be willing to match the price of a reliable internet pharmacy as long as it is not less than their own cost. My own vet will do that, and it is worth a try to ask. Here's an example of a pharmacy that I'm talking about:

http://www.californiapetpharmacy.com/ve10caco.html

Marianne

[labblab]

Also, in relation to your question about Margie's trembling, here's a copy of a reply that I just posted to another member whose dog is having a similar problem.


Hello and welcome from me, too! I just want to "second" what Lori has said above: through the years, we have had other members who have worried over unexplained tremoring episodes. My own Cushpup, a Lab, suffered from intermittent involuntary tremoring episodes across his shoulder blades that made him look as though he was shivering. For him, the episodes happened most often when he was sitting down or at rest -- even when he was sleeping. Sometimes he would jerk himself awake, they were that severe. But just as is true for your boy, he would usually just stretch afterwards and never seemed to be in any particular pain or discomfort. The tremors began before he started trilostane treatment, worsened significantly when he first started the drug, and then ended up stopping entirely a few months down the road.

We never did figure out what caused them. Through the years, other members here have reported similar issues with their dogs under a variety of circumstances: some using trilostane, some using Lysodren (another medication), and also dogs not yet being treated at all. For this reason, it has been hard to point to a single "trigger." It is true that tremors are now listed as a possible side effect of trilostane. But I've always wondered whether such tremors more often just somehow relate to rapidly changing cortisol levels. But the good news is that they didn't really seem to bother my dog at all -- it was ME who was going crazy trying to figure them out!

Marianne

[Margie Bell]

Hello everyone,

Margaret seems to be having a relapse of sorts. I think it may be related to the Cushings, but I'm not entirely sure. Originally, before the excessive water and urination, she had the inflammation in her shoulder that rendered her unable to walk. This was about a year ago and at that time she didn't have other Cushings Symptoms. So we went through MRIs surgery with no results and then a regimen of antibiotics which eventually seem to have healed the problem.

Eventually the Cushings symptoms came to light so I assumed that it was probably all related to Cushings.

Well, it's back again! She can barely move. My question is this, is this typically a part of Cushings? She is still on the trilostane. 30mg daily. I also have to apply ointment for the calcinocious cutis, which has gotten pretty bad. I just picked up the ointment a few days ago and have been applying daily. I feel like I want to put her on those antibiotics again, but with so many medications, it's worrisome.
Her appetite is not what it used to be either. She doesn't seem to want her dog food anymore. I have to sprinkle rice or boiled egg in the food for her to eat it and even then, she doesn't finish it.

I'm one worried Mama.
-Pam

[labblab]

Welcome back, Pam, although I'm sorry that Margaret is doing poorly right now. My first thought is to wonder whether her cortisol may now be dropping too low on this particular dose of trilostane. You had told us earlier that she was due for a second monitoring ACTH stimulation test back on September 2. Can you tell us exactly what those test numbers turned out to be?

Regardless of those results, it is probably important to retest her again now given the symptoms you are describing. Is your vet aware of how poorly she is doing?

Marianne

[Margie Bell]

We haven't taken her back since September. When she had the last test, the vet said her numbers were good, and the excessive water drinking & Urinating had stopped. The shoulder inflammation started about a week ago seems to have gotten worse daily.

She is still drinking water regularly, but her appetite has changed. She won't eat her regular kibble. At this point I'm feeding her a canned version and her treats because that's the only think she seems to eat. This evening, she only ate the treats. I don't have a copy of the results of the last test. I'll take her in this weekend for another blood test.

-Pam

[Harley PoMMom]

Since her appetite has waned I would definitely have her cortisol level checked. On the forum we have seen that a dog's cortisol level can drop too low even when their Trilostane dosage was unchanged.

Lori

[Whiskey's Mom]

Hi- I agree with Lori. Whiskeys appetite change was very similar to Margie Bell's. His cortisol was scary low. We had gone through so many different dog foods. He would only eat treats & people food.
Hope she's feeling better soon.

[molly muffin]

I agree it's worth getting it checked out just in case. Any time you have appetite change, or if you have diarrhea, etc, and they are on cortisol medication its worth checking it out.
My dogs cortisol would go up and down sometimes within a month, sometimes it would stay the same for 3 months, but she was a wobbler and we were always doing dosage adjustments it felt like.

[Margie Bell]

Well, it's not going so well. Margaret's condition has deteriorated drastically. The vet recommended to take her off the trilostane to see if the muscle inflammation would get better. When she had the muscle inflammation earlier this year, it was treated with prednisone. Of course she can't take that medication because of her Cushings situation. She also saw a neurologist because they think it may be a brain issue and mentioned an MRI! We did that earlier this year!

We've been off of trilostane for a week today yet she can barely move. She won't eat kibble or treats. I've had to feed her cooked chicken and sometimes she'll eat rice or pasta. Tried peas too, but she's not having it (this was a dog that ate EVERYTHING!). I have to feed her because she cannot stand long enough to eat. Her breathing often times seems labored! She hasn't pooped in four days! I'm really worried. Vet said to wait two weeks, it's been one, but I don't know if I should. She seems so unhappy. Every now and then she perks up and gives us a glimmer of hope, but not often. For the most part, It' has only gotten worse. She has had a few accidents in the house because she can't move.

Her quality of life is just hard to take. I walk out to my car to go to work and I see this beautiful rainbow and I just lost it! I don't know what to do.

~Margie Bell's Mom, Pam

[LeighHop]

I just wanted to say I'm so sorry for everything you're going through. I'm new to this Cushing's thing so I can't offer any advice. But just know people are out here rooting for you and Margie Bell.

I have lost some faith in veterinary medicine. Sometimes it seems like we are the vets and they are just the ones who can write the scripts and order the tests we ask for. It's very frustrating.

Will continue to be thinking of you all.

[DoxieMama]

Did you have another ACTH test done, or did the vet just say "take her off the trilostane and wait two weeks"? I'm concerned that maybe her cortisol dropped too low... and it's staying low. You wouldn't know that unless they tested. You might also ask them about giving her a low dose of prednisone... if her cortisol IS too low, that might help. Can you call and ask them today?

[Harley PoMMom]

I am so sorry your precious girl is not feeling well and I know how worrisome that is. If this were me I'd ask the vet about giving her a low dose of prednisone to see if that perks her up. Hoping dear Margaret is feeling much better soon.

Hugs, Lori

[judymaggie]

Pam -- I am so sorry that Margaret is not feeling well. I think Shana and Lori's suggestion is an excellent one -- if you see an upturn in her affect and behavior after getting prednisone, it may well be that her cortisol is too low.

[Margie Bell]

According to her test in September, he thought that the dose that she was on was good, so we stayed ar 30mg a day. She weights about 22 pound at this time which is down a few pounds from her normal 25 pounds.

It will be one week tomorrow since we saw the vet. He suggested we wait two. I will call tomorrow to update him on her lack of progress.

Thanks Pam

[Squirt's Mom]

Pam, I agree about trying the pred dose to see if that helps. IF this is a case of her cortisol dropping too low that means she is in a life-threatening situation. The pred can help immensely in those cases. So it is well worth a try in my mind. I wouldn't wait until tomorrow to see what the vet had to say either - I would take that step of trying the pred today, now in fact. ;) Let us know how she is!

Hugs,
Leslie and the gang

[DoxieMama]

Pam,

When you call the vet, can you ask them for the actual numbers from the ACTH tests that have been done on Margie Bell? I haven't seen any of those numbers, only the LDDS test that was done on August 12th, prior to starting Vetoryl. From what I understand (and please, correct me if I'm wrong), she then started with 20mg of Trilostane total - 10mg b.i.d. There was a test done after one week which "didn't show much change" so her dose was increased to 30mg total. The next ACTH test was on Sept. 3rd, which was two weeks after this new dose and the results were "good". You haven't had a test since.

If what I've posted is correct, and how she is doing now, I am even more concerned. The manufacturer does not recommend a dosage increase until after one month, and Margie Bell was increased after a week! Her numbers were "good" on Sept 3rd but she should have been tested again around the 17th to make sure they weren't too low.

Do you have prednisone you could give her? If not, PLEASE ask the vet for some as soon as you can. And if you could get the actual numbers from the test results, please post those here.

Shana

[Margie Bell]

I do have prednisone so I gave her the prednisone yesterday, November 31. I gave her half a pill yesterday and one pill this morning and one with dinner. Hasn't been much change. I'll continue to give it to her tomorrow.

The internist referred her to a neurologist. For some reason, he is not associating this problem with the Cushings at all? From what I read about it, it is symptomatic of a dog with Cushings. Right? I mentioned the prednisone to him and he suggested I wait & see thee neurologist first. (I didn't wait...I gave it to her yesterday)

Does anyone have any recommendations for a dog food she might eat? I don't mind cooking for her, but I want to make sure she's getting all the nutrients she needs. I'll call tomorrow and have them email all her test results. Thanks so much for the advice! I really appreciate the knowledge and information that you all have given.

~Pam

[Whiskey's Mom]

Hi! I went through a really hard time with Whiskey not wanting dog food. I also was worried about him not getting the nutrients from human food & treats. Not sure about any restrictions Margie Bell has, but I randomly bought a can of Simply Nourish Turkey Sweet potato & Cranberry at pet smart. I was desperate & thought it looked appealing & he eats it. I do mix it with a bit of boiled chicken & rice. Also another member recommended Honest Kitchen to me. He likes that too & it's very healthy. the people at Honest Kitchen are super helpful & if you email them they respond quickly. I know how hard it is when they won't eat so I understand! Best of luck.

[molly muffin]

Hi Pam, I just wanted to check and see how your baby is doing and if there has been any improvements today?

[Margie Bell]

Hi everyone. I would like to thank you for your knowledge and support during this very difficult time. Unfortunately, Margaret is no longer with us. She just never seemed to recover. I tried the prednisone and she continued to get worse. She got to the point where she couldn't stand or squat to urinate. The spasming continued. Her breathing was labored and we decided that it was time to let her go. I can barely write this through blurry eyes.

It's been two days now since she left us. I haven't slept through the night yet. Actually, since she has gotten so ill, I haven't slept through the night either, but it's different now. She's not here anymore and it's lonely around here. Even with another dog, two kids and a husband. My first fur baby is gone and my life will never be the same. She was such a great dog. Everybody LOVED Margaret and she loved EVERYONE back. Super affectionate and loving. Nellie, my other Frenchie, has never been without a companion. I hope this doesn't adversely affect her. Margaret is the only dog she trusts. Even when we would go to the park and Margaret would happily play with all the other dogs and people, Nellie only stayed by my side and even got a little testy if Margaret gave too much attention to other dogs. It will be an adjustment for all of us.

I learned so much from this forum. What you are doing is wonderful. Providing knowledge and support to Pup Parents who need information about the effects of this disease. I only wished I'd found this forum sooner. Maybe I could have helped her more. Maybe I'd have her for another year. Thanks again for all your knowledge and support.

~Margie Bell's Mom, Pam❤️😥

[DoxieMama]

Oh Pam, I am so sorry for your loss. You were a wonderful mom for Margie Bell, and she knows just how much you loved her. I pray that your memories will comfort you in the days ahead. We are here if you need a place to come to share about her, and how you are all doing... an ear to listen at any time, day or night.

I am sending so many huge hugs your way.

Shana

[labblab]

Dear Pam,

I, too, am so very sorry about sweet little Margie! You have been such a good mama and tried so hard to help her. You have given her the final gift of releasing her spirit from her tired body, but at such a price of your own pain. Please know that we will always welcome you back to us. You and Margaret are forever part of our family here. We will always honor Margaret, and we are always here to support you, Pam, during the rough days ahead. Please come back to us at any time to share stories, to talk -- to let us know how you, your family and Nellie are doing.

Again, I am so sorry and I am sending tons of healing hugs your way ~
Marianne

[Squirt's Mom]

Dear Pam,

I am so sorry to hear about sweet little Margie. :( You worked hard to give her back some quality of life but when that could not be done, you gave her the best gift of all - freedom from a failing body. Today she is as she was in her youth, strong and whole once again. One day you will hold her again and until then your precious girl will watch over you just as you watched over her.

Our deepest sympathies,
Leslie, Trinket, Sophie, Fox and all our Angels



FRIEND

I lost a treasured friend today
The little dog who used to lay
Her gentle head upon my knee
And shared her silent thoughts with me.

She’ll come no longer to my call
Retrieve no more her favourite ball
A voice far greater than my own
Has called her to his golden throne.

Although my eyes are filled with tears
I am thankful for the happy years
She spent down here with me
And for her love and loyalty.

When it is time for me to go
And join her there, this much I know
I shall not fear the transient dark
For she will greet me with a bark.

~Author Unknown

[Joan2517]

I'm so sorry about Margie, Pam...they leave such a hole when they are gone. When Lena died, we had one cat and three other dogs and the emptiness was overwhelming. I still feel it...

She sounded like such a love.

Joan

[Margie Bell]

Thanks so much for your kind words. Still can't talk about it without completely breaking down.


Margie Bell
October 17, 2007 ~ November 2, 2016

❤️

[Joan2517]

I still cry when I talk about Lena, even when I'm talking to myself. My other dogs are used to it and Sibbie has never known me any other way...it's hard.

[Whiskey's Mom]

I'm so very sorry about the loss of your sweet girl. I wouldn't be able to speak either. Wishing you peace and comfort.

[judymaggie]

Pam -- I am so sorry for the loss of your dear Margie Bell. As others have said, you tried so hard to extend her life as well as improve the quality. You were a wonderful Mom! I totally understand the inability to speak -- I think it is very brave of you to come on and tell us of her passing. Just be gentle with yourself during this difficult time -- hugs sent your way.

[MyGirlSecret]

I am so sorry for the loss of your Margie Bell, it is so heartbreaking. My thoughts are with you at this very difficult time.

[deedz]

I am new to this group, but wanted to offer my condolences and prayers to you on the passing of your beloved Margie Bell. I can feel the sadness in your post, please take care and time to grieve.

Debbie

[apollo6]

I am so sorry for the lose of your beautiful, sweet. Margie Bell. There is nothing I can say to make it better. May she be at peace.
Sonja and Apollo

[LeighHop]

I am so very sorry to hear about the loss of your sweet kiddo. She was clearly a very special little soul.

[Budsters Mom]

I am so very sorry for your loss.:o

[molly muffin]

Oh Pam, I am very sorry to here that Margie never got any better and has now passed.

I know how hard it is to talk about to even think about them not being with us any longer.

Sending you big hugs and my sincerest condolences.