Our Boy

[bmom]

I have never been in a forum before. But, then, again I have never had a family member with Cushing's Disease.

Our 11 year old English Springer Spaniel was recently diagnosed with Primary Cushing's Disease. The symptoms were present more than a year ago. Yet, our vets kept treating them individually until I insisted that they were all related to Cushing's Disease.

He is responding to his first round of Vytoril (trilostane). However, his meds are $240 per month and his ACTH Stim Test and CBC was over $500! I am in shock. His Vytoril was increased and we will test again in two weeks, which will be over $300 again.

Of course, he is a dear boy. We love him with all our hearts. But, how do you cope with the high expense of blood tests and meds? I am sure pet insurance would not begin to cover these expenses.

We can afford it but, it is going to make a big dent in our monthly retirement budget. Can we get a presciption and order his meds online? Would they be reliable?

We are dealing with a lot of symptoms and trying to keep his life as loving, fun and normal as possible. We are not sure if all the symptoms will subside or how long we will have him. That's the real heartbreak. Love to you and your furbabies.

[labblab]

Welcome to you and your boy! I am so glad you've found us, and we are surely hoping you'll soon see improvement in your dog's symptoms. It will help us a great deal if you can tell us exactly what problems he has been experiencing, as well as the actual results for the tests that were given while diagnosing his Cushing's. As far as any blood panels and urine tests, we only need you to list any values that are outside of normal range.

It will also help us to find out the timing and actual numbers for the first ACTH monitoring test since beginning the Vetoryl. Also, how much does he weigh and what dose of the medication is he receiving? Sorry for so many questions right off the bat, but your answers will help guide our thoughts and suggestions.

First off, though, if you live in the U.S., $240 per month is a massive amount to be paying for Vetoryl. Are you buying it directly from your vet? If so, without much doubt, you should be able to buy it more cheaply from an internet pharmacy. I am guessing your boy probably weighs around 50 pounds or so? At that weight, I cannot imagine he would be taking a capsule combination that couldn't be purchased for significantly less. Just Google "Vetoryl," and you'll see what I mean. I'm sure our other members who are buying Vetoryl can stop by and give you some specific pharmacy suggestions.

As far as the cost of testing, hopefully he will soon settle into a consistent dose of medication and the testing will become less frequent. It is definitely the case that the initial testing costs are the highest. You may already have seen this, but here is a helpful Treatment and Monitoring Flowchart published by Dechra, the maker of Vetoryl:

http://www.dechra-us.com/files//dechraUSA/downloads/Client%20Literature/47902_VETORYL_10mg_Treatment_and_Monitoring_Brochu re_Update_3_2_ps.pdf

Thanks again, in advance, for your additional information about your boy. We are excited to get to know him better! :)

Marianne

[bmom]

Over a year ago, (February 2014) our 11-year old B & W English Springer Spaniel, Brady, began panting excessively. Our vet had a number of explanations. She tried to put our minds at ease but, we knew this was NOT NORMAL for him. We bought a cool mat for his crate, which seemed to help a little.

Next, the black portion of his coat also began turning brown. He is a house dog so, it wasn't sun exposure--the vet's explanation. Over the summer, alopecia appeared on flanks, tail and neck and his white fur was not initially affected. Brady started developing lumps which the vet diagnosed as sebaceous cysts.

He began to anticipate our every move and whine a good deal and wants us to hurry up with whatever we are doing. Then, came mysterious discoid lesions in sucession; on his groin and two on his neck.

The remaining symptoms on the list developed over the next 6-8 months and our vet(s) attributed his symptoms to age, Canine Cognition Disorder, clouding of the lenses in his eyes, increasing hypothyroidism and/or allergy and treated him asymptomatically for individual symptoms nearly a year ($$$$). We were frustrated with futile and constant return trips, as well as all the symptoms that were popping up out of nowhere and growing more pronounced with each passing month.

At the time, I was caring for my mother (who passed away in late July) After her death, it dawned on me that all his symptoms were somehow connected! They had to be!

It was then that I began to research the possibility that our boy had a serious, chronic ailment and told my husband. He was shocked but, earnestly listened to me and was very supportive of my quest to get to the bottom of all of this for Brady's sake.

Knowing that Brady was euthryoid taking thyroid supplement, I ruled that out but, searched for the etiology that would possibly cause canine hypothryoidism in a normal, healthy dog. It was all I initially had to go on. From there, it snowballed. Suddenly, it all seemed to come together. Brady didn't have ALL of the symptoms of CD. He wasn't a classic "text book case" but, he had enough as far as we were concerned to demand further investigation on the premise.

It took another two visits to the GP vet (labs on the last one) and an insistence that he be tested for Cushing's Disease before we got the right diagnosis and a referral to a specialist for help. Mind you, this is a state-of-the art veterinary clinic with very caring vets and staff. They are upset that they somehow missed the whole picture on him.

Brady has a myriad of symptoms some of which medication has already improved *:

*increased/excessive water consumption (polydipsia)
*increased/excessive urination (polyuria)
*exercise intolerance, lethargy, general or hind-leg weakness--
vet attributed to age and bilateral TTAs
*new reluctance to jump on furniture (his sofa)
*symmetrically thinning hair or baldness (alopecia) on torso
*other coat changes like dullness, dryness/hair growth became fine
*slow regrowth of hair after clipping
*thin, wrinkled neck skin
*big hard, calcified lumps in the skin (calcinosis cutis)-- vet
attributed to sebaceous cysts
*multiple discoid skin lesions--vet did skin scrapings
*anxiety--my husband can't close the bathroom door!
*agression--this is much better, now
*excessive licking of legs and rear (possibly for comfort)
*eye allergies improved dramatically
*confusion--can't locate us in the house or thinks we are gone or,
seems to hear things
*disinterest in answering the door, watching dog shows/dog movies
favorite commercials and other daily stimuli
*exhaustion at times and very deep sleep (hard to wake)

After initial testing, he began the Vetoryl five weeks ago, at 30 mg twice daily. His ultrasound, prior to dosing, showed enlarged adrenals, liver and a "prominent" pancreas. After his first testing, since beginning the medication on 3/09/15, it was increased to 30 mg 3 times daily. The canine endocrinologist said his values were at a 12 this week and she wants to see them at a 5. His CBC was good. We will retest with an ACTH Stim on 3/27. Yes, you are correct he weighs almost 50 lbs.

His new doctor also gave us prednisone tablets in case he were to suffer Addison Crisis, a possible side effect from his medication. However, if he exhibits symptoms, we are to call prior to dosing him and, then, transport him to the clinic. So far, there are no symptoms of this.

We purchase his Vetoryl directly from the vet because the dosage will continue to change until we get him at the proper level. The testing and meds might be less with our regular vet but, she turned us over to the endocrinologist and, frankly, after two vets missing his diagnosis I don't want to take him back there except for routine visits. He has gone there since he was a puppy. So, there has been a real continuity in his care.

His vet tab this month, after testing next week, will top $1,000K, not including thyroid supplement! We can do it and expect the testing to become more infrequent. However, we need a good, reliable online pharmacy for his med once a maintenance dose is established. :confused: If anyone can help us with finding a reliable online pharmacy (we are concerned with efficacy of the medication and don't know if that could be a problem), we will be very grateful.

His endocrinologist said the goal was to relieve all his symptoms. We sincerely hope we can do just that for him. He is a treasure and one of a kind (aren't they all?).

We are hoping that this is only Primary Cushing's Disease but we know that there are instances where certain types of pituitary tumors can grow and even be malignant. He has not had an MRI of the brain.

I guess when we get his levels down, we will ask what we might hope for as far as life expectancy. Right now, it's all about quality of life and keeping things normal. He has play dates with the neighbor dogs. Our yards open into a big "dog park" and he has his daily jobs to do walking us, recycling and helping to fill bird feeders, etc. He enjoys going to the groomer, a close family friend and playing with his/our 10 grandchildren as well as "Cousin Milo." He has a full, rich life and we are retired and home pretty much 24/7 except for the occasional road trip and he rides in style with us.

Thank you for the Treatment and Monitoring Flowchart published by Dechra, the maker of Vetoryl. We will print it out.

This is, indeed, uncharted water for us. I was so glad to find this group last night. Well, that's it, I've poured my heart out to you and you know everything! :) The hope, too, is that I have said something that can help someone else in their journey.

Thank you in advance for your prayers and advice.

All the best!

[labblab]

Thanks so much for all this additional info. I understand how frustrating it must feel that Brady's diagnosis was overlooked so long, because I experienced a similar delay as have many other members here. But Cushing's can be such an insidious disease with so many gradual changes that only "add up" slowly, both in the minds of the owners and also the family vets who are confronted with individual puzzle pieces over time. Sometimes it takes a pair of new eyes to suddenly see everything coming into focus all at once, and that is often a service that a specialist ends up performing.

So if I'm interpreting things correctly, Brady was taking 30 mg. twice daily for about a month, with a monitoring post-ACTH cortisol level around 12 or so. An additional 30 mg. dose has now been added in with the goal of lowering the ACTH closer to 5, and he'll be retested after two weeks on that dose. Have I got things straight?

If so, this sounds like a very reasonable progression. The only unusual feature is switching to dosing three times daily as opposed to increasing the morning dose and otherwise leaving a twice daily dosing regimen intact. I must tell you that after spending over a decade on this forum, Brady is probably only the second or third dog that I can recall being dosed three times daily. That regimen does increase both the cost and the inconvenience to the owner, and I am not sure that there has been enough research done on three times daily dosing to establish that it is significantly preferable in terms of outcome. If your specialist does have more recent info in this regard, we'd surely welcome any citations. However, for most families, it would be a regimen that would be difficult to maintain, regardless. Brady is a very lucky boy to have his parents with him at all times.

However, just FYI, your overall drug cost will probably always be lower if you were to consolidate into a twice daily dose. As an example, one 60 mg. cap in the morning and one 30 mg. cap in the evening will likely be cheaper than three 30 mg. caps daily. And Dechra does now say it is OK to give unequal twice-daily doses as long as the larger dose is given in the morning.

In terms of selecting an internet pharmacy with greater confidence, you may want to choose one that carries VIPP accreditation:

http://www.nabp.net/programs/accreditation/vet-vipps

http://www.nabp.net/programs/accreditation/vet-vipps/find-a-vet-vipps-online-pharmacy

Although I have not used them personally, I know we have had several members who have used California Pet Pharmacy and also a member who used Lambert (listed under Pet Choice Pharmacy). As you will see, though, there are several high-profile internet veterinary pharmacies that appear on that list. I would just compare their prices for Vetoryl at the time you need to place an order.

OK, enough for now! Again, thanks for taking the time to give us this additional info.

Marianne

[bmom]

Thank you, Marianne! Yes, you have things straight! :)

Brady currently is receiving two 30 mg doses in the evening. I guess I didn't make that clear. He takes the 30 mg dose in the morning. The vet gave my husband the option for the additional dose either in the morning or evening with his food, not that a meal makes any difference. But, he is more likely to accept the additional dose at that time with his other meds and supplements. (Our sweet guy is extremely routine oriented and can count! We are barked at if it isn't right, too!)

I read the chart and we will keep it on hand. Hopefully, we will soon have him on a maintenance dose with further subsidence of symptoms and a more manageable pharmaceutical budget.

Thank you for your prompt response. It's good to know their is a community here!

All the best!

[labblab]

Me again :o. I just want to add these two thoughts before I shut up and let somebody else join the conversation ;).

First, I want to clarify that you are hopefully giving both the morning and evening doses along with a meal? As it turns out, the meal really does matter, because Vetoryl is a fat-soluble drug that is not metabolized properly on an empty stomach. For this reason, Dechra tells us that dogs should not even be fasted on the morning of a monitoring ACTH test, but instead should receive their morning dose along with breakfast. Otherwise, the ACTH test result may turn out "higher" than would otherwise be the case (because the drug is being metabolized less efficiently on that day) and the Vetoryl dose mistakenly increased. So if Brady is going to be dosed twice daily with Vetoryl, he needs to receive two meals a day as well.

Secondly, if a dog is being given two unequal doses of Vetoryl, the larger dose should be given in the morning rather than the evening. I am not sure why your vet gave you a choice about this. Here is a quote from Dechra's U.S. Product Insert:


Once daily administration is recommended. However, if clinical signs are not controlled for the full day, twice daily dosing may be needed.

To switch from a once daily dose to a twice daily dose, the total daily dose should be divided into 2 portions given 12 hours apart. It is not necessary for the portions to be equal. If applicable, the larger dose should be administered in the morning and the smaller dose in the evening. For example, a dog receiving 90 mg would receive 60 mg in the morning, and 30 mg in evening.

http://www.dechra-us.com/files/dechraUSA/downloads/Product%20inserts/Vetoryl.pdf

ACTH monitoring tests serve two main purposes. The first is to check effectiveness -- is cortisol being lowered sufficiently or does the dose need to be increased? But of even greater importance is safety -- is cortisol being lowered too far? To that end, it is far more important to perform the testing and to evaluate the cortisol at the time that the medication is maximally effective. That means 4-6 hours after the larger dose. So unless Brady's monitoring testing occurs at night, he really needs to take the larger dose in the morning.

Marianne

[bmom]

Thank you! This is essential information and I have discussed it with my husband. He usually does Brady's meds because I was always busy with Mom's.

Brady was receiving the equivalent of a small meal (with cheese) in the morning along with his 30 mg of medication and we set the alarm on test days to make sure that it is given early enough to fit into the 4--6 hour timeframe. However, we were not educated on the Vetoryl being fat-soluble and the value of giving the large dose in the morning.

We do understand the ACTH monitoring but, didn't really know about the relationship of the larger dose prior to testing. I guess we, naturally, thought the level would be maintained for 24 hours.

So, Phil is only going to give Brady a 30 mg dose tonight and add his 30 mg back into to the morning dosing routine tomorrow.

Thank you for the thorough explanation. We understand the rationale behind this. My husband is a retired chemist. So, he is precise and consistent but, just didn't have the proper information or, theory.

Thank you, again! We are truly grateful!

[molly muffin]

Hello and welcome to the forum.

I just want to add in that since you mentioned his eyes are cloudy that you might want to have a BP check as high cortisol can cause high BP and high BP can cause retinal bleeds.

I was just looking at some prices some people have mentioned and quite a few of our memebers use Diamondback pharmacy, and just was mentioned that 60mg was $32 plus shipping. Not sure if that was vetroyl (since it's 60mg) or trilostane, but either way it is cheaper for one month than what you are now paying. So that is a possibility for you too.

Welcome again.

[bmom]

Thanks!

Brady did have a thorough eye exam; no retinal tears or bleeds just a natural change in his lenses due to age, 11 years.

We are currently in the process of checking certified online pharmacies for lower cost meds. However, we will also check out Diamondback.

Once we have his maintenance dose established, we can use one that's online.

Thank you for the warm welcome and your response. This is all new to us and we are just starting to find our way. Brady will be tested again in a little over a week.

He still has some symptoms and was really restless last night but, finally settled down in his bed. It may be due to the fact that we both have colds and haven't been out for walks lately.

All the best!

[molly muffin]

Very good to hear it is just natural cloudiness.

Those springers do love to use up their excess energy so maybe he just needs some walks when you are feeling better. The colds have been fairly nasty ones this year it seems

Take care!