PEPPY has Cushings AND SARDS

[Peppy]

Our 11 yr old poodle, has been diagnosed by our vet as having Cushings and is therefore on 30 Mgs of Vetoryl per day and a special diet.

About 30 days after the diagnosis, we noticed his eyesight was going and the vet said probably was cataracts. I suspected SARDS and I am not sure why. About 1 week ago the opthamologist diagnosed Peppy as having SARDS.

I am so confused since the symptoms for SARDS and Cushings are the same. We ordered the HALO vest for our now blind Peppy and the owner there said she lost her dog to SARDS last week. Our opthamologist said SARDS only affects the eyesight yet this lady is adamant SARDS Is an auto ammune disease and can be treated even though her dog was on this treatment and past away from SARDS. She highly recommends a Dr Plechner from California. He promptly called me and left me a message.
After searching Plechner all I could find is pages and pages of self promotion on this doctor. Seems like he may be an SEO expert.
I don't know if we should continue with the vetoryl since SARDS has the exact same symptoms.

Peppy is 17 lbs after his weight gain from a fit and healthy original 13 lbs. the other concern is at night he seems very restless and even confused, another symptom of both diseases.

My wife also has him on Adrenal Harmony, by Pet Well being.

Any help is appreciated.

[Peppy]

Is Cushings a life ending diseases even if treated?

Is SARDS a life ending disease or does it solely affect the vision?
I understand the SARDS (Cushings like) symptoms disappear after 4-6 months on their own.

How do I rule out Cushings and the medications if SARDS has the same symptoms and testes the same?

Is there anything I can do about the confusion restlessness that seems to occur every night?

[addy]

Hi and Welcome,

I am so sorry to hear of your restless nights and Peppy. Others will be along soon to give you some solid advice. A dog diagnosed with Cushings can still have a quality of life. Most of the dogs die from something other than Cushings.

Could you tell us what tests where done and the results? What symptoms did Peppy have to lead to the diagnosis? What were the results of his ACTH tests since starting Vetoryl? The more diagnostic info you can give us the better.

We have members who have experienced Sards and many more will come along to give you their experiences.

My Zoe was diagnosed June 2010. We started treatment with Vetoryl in JUne 2011. Right now she is barking at me to go for her chicken walk. She is getting older and has had other problems, hearing not so good, eye issues, she has had IBD but that is controlled with daily medication. Her back legs are not as strong as they should be but she enjoys each day so we plug along toeegther, happy for the moment.

I will say we moms and dads take blindness in our pups a lot harder than they do. I dont know that much about SARDS except that it can come on suddenly and I thought could resolve. There is a lot of info out there, not always right info. If you mean your restless nights, then knowledge helps and you have come to the right place becuase along with knowledge you need support:)

Hang in there why we sort things out.

[mytil]

Hi and welcome from me too.

No Cushing's is not a death sentence. Many here have treated for years and their pups passed away for other reasons (as Addy mentioned above).

I must admit, I do not have direct experience with SARDS so cannot really go into a lot of details. Here are some great links on it - (sorry to repeat if you have already read up on it) http://www.k9cushings.com/forum/showthread.php?t=213 - talks about the diagnosis and any treatments. I am unaware of any deaths directly linked to SARDS, so maybe this women's dog passed away because of some other reason.

Let us know more about all the tests performed.

Terry

[labblab]

Welcome to you and Peppy!

I am so sorry for the challenges you are facing, but very glad you have found us. First of all, I have to tell you that I am far from an expert on SARDS. It appears to be an under-researched condition that could benefit from much more consideration and study. However, I do want to direct you to this thread on our Resources forum that provides some helpful links:

http://www.k9cushings.com/forum/showthread.php?t=213

From what I have read there myself, it is my understanding that even though dogs with SARDS often present with other symptoms that are consistent with Cushing's, very few actually do suffer from conventional Cushing's. However, it can happen, and therefore diagnostic testings for Cushing's is recommended for SARDS dogs who fit the conventional Cushing's profile. Can you tell us whether Peppy actually tested "positive" on one of the two diagnostic blood tests for Cushing's (ACTH or LDDS)? If not, then I would be suspicious that Cushing's is not really be at play.

I think the cause of SARDS and a possible link to Cushing's is still poorly understood. An auto-immune issue is one of the causes that has been suggested, and a researcher at the Iowa State University vet school offers out a related treatment that apparently has restored some percentage of vision for some dogs. But I think this treatment approach may remain somewhat controversial among eye specialists. Info about the Iowa State protocol is also contained on that link that I gave you above in the event you want to pursue it further.

As for Dr. Plechner, I am aware that he and a nurse (Caroline Levin) both endorse personal treatment protocols for treatment of SARDS that are based upon Dr. Plechner's theories regarding damage created by disruption of cortisol synthesis. I have to agree with you that Dr. Plechner is certainly very high profile in terms of web references associated with SARDS. I have seen owner testimonials on the internet. However, I have yet to find any related studies or articles about his theory/treatment appearing in professional, peer-reviewed journals. And I personally find it troubling that he would contact you, unsolicited, to offer his services (including, perhaps, his special lab analysis?). His treatment involves giving supplemental steroids and thyroid meds to dogs suffering from a particular adrenal syndrome that he believes he has identified and named. Since this is not a benign protocol, I would not feel comfortable considering it without the specific knowledge and approval of my own vet. From my reading on the web, it appears as though very few conventional vets endorse this treatment approach and some believe it has the potential to be damaging.

Whether or not Peppy suffers from Cushing's in addition to SARDS, I don't believe there is any reason to believe that his life will be shortened. With appropriate treatment, we have seen many dogs here who proceed to live out their normal lifespans. So to me, the key issue right now in that regard is to substantiate the Cushing's diagnosis as opposed to the possibility that all symptoms have been caused by SARDS alone.

Marianne

[Peppy]

Thank you all for the caring responses. I will get the test results and post them soon.

[molly muffin]

Hello and welcome to you, Peppy and your family.

You are certainly going through some extremely trying times with the SARDS and the possibility of cushings.
We will be interested in the test results as relates to cushings and any other abnormal lab results. If you could just post the ACTH and/or LDDS results and lab abonormals High/Low with ranges, that would be immensely helpful.
As Marianne has said, as far as cushings goes, a normal life span may be lived, as some of our cushings dogs have been on treatment plans for years.
As far as SARDS, there does seem to be some recovery, although I'm not sure about the eyesight portion.
Thank goodness it appears to be rare. Although I know that is of little or no help to you in this instance.
We have some members who have blind dogs and they are usually able to adjust quite well in time, using their sense of smell and hearing.

Lets see what the labs look like and go from there.

Sharlene and Molly Muffin

[Peppy]

Ok. Here goes. My wife picked these labs up today from the Vet. Not exactly sure I know what to post but here it is...,,

October 16, 2012 (before special diet and before Cushings diagnosis)
LFP1- liver function profile
ALP 493 (hi)
Gamma 8 (hi)
ALT 268 (hi)
Lipemia 3+

October 18, 2012
ACTH
Cortisol (base) 70.9 Range 30-300. Units nmol/L
Cortisol (ACTH)-1 hr 709 Units nmol/L
Cortisol (ACTH)-2 hrs 1033 Units nmol/L

November 09, 2012 after Vetoryl treatment
(ACTH)
Cortisol (base) 91.7. Range 30-300. Units nmol/L
Cortisol (ACTH)-1 hr 411 Units nmol/L
Cortisol (ACTH)-2 hrs 482 Units nmol/L

Someone asked symptoms Peppy was experiencing before the Cushings diagnosis. He has sudden weight gain from 13 lbs to 17 lbs.
He was drinking a lot more than usual. His appetite had exploded where before he had been a very finicky eater and was always very lean.

As for blind dogs adapting and compensating with other senses, I see very little evidence of this. Perhaps there are different degrees of blindness in different cases, Ie; cataracts, etc, where some dogs see light or shadows etc. therefore theses dogs are actually adapting with their senses.

I believe Peppy is completely blind. According to the opthamologist, his retinas are totally dead. He adapts by bumping into EVERYTHING! This is why we cannot wait to receive our HALO vest. His poor nose and head must be all bruised up by now.

He actually fell down the stairs once before his diagnosis and when the vet thought he had cataracts. Now we have gates up and pillows everywhere along with plastic wire ties protruding off his collar used as a cane to sense when he is about to hit something. It helps a little but not too much. The HALO vest should give home his confidence back and spare home the bruises.

Our sadness and tears have deminished but I can tell you a blind dog is a whole lot more work and effort. We love home very much and are not complaining but when I see another dog with vision bouncing around and maneuvering effortlessly, it really hits home.

Your help is appreciated.

[addy]

I understand your devestation. It is so hard to experience your pup going through these awful changes. Leslie, one of our dearest members has a few blind babies. One of her dogs had to have her eyeballs removed they were so diseased. Trinket does not know shes blind from the way Leslie describes her.

That is not to diminish your loss but to give you hope. You can find her thread in our EVERYTHING ELSE section.


Someone will be along to check through your tests. I think we have to convert them to U.S. ug/dl. I am so sorry, I dont remember how.

I know when my Zoe first starting losing her hearing, I was devestated and when she started having eye problems which affected her vision it was equally hard.

I hope you Halo vest comes soon.

[molly muffin]

yes I was going to ask. On your ACTH test does it say nmol or ug after the number? if it is nmol, then we convert them by dividing the number by 27.59 to get the ug reading, which is what most people here are use to seeing. I know, I do it for mine too. :)
If it is nmol, the conversion would be as follows:

ACTH
Oct 18, 2012
base 2.56
1 hr 25.69
2 hr 37.44

ACTH
Nov 19, 2012 (after vetroyl treatment)
base 3.32
1 hr 14.89
2 hr 17.47

Those numbers don't look like a controlled cortisol reading to me. Had your vet spoken to Dechra to confer? At 30mgs, I'd expect to see the 1 hr and 2 hr numbers lower.

Oh dear, no I don't mean it is easy at all and I cannot imagine how hard it would be try and suddenly have to convert your home for a blind furbaby, whose every step you have to worry about. I do hope the vest comes soon and that it helps. I remember someone saying something about placing scented candles in different parts of the house. One scent for one room, another for a different one. They don't have to be lit, but the smell will allow them to associate that area with that smell. I don't know if it works or not, but what the heck, might be worth a try.

I would imagine that it would take a bit of time for those other senses to kick in? But that might just be hope speaking.

Hopefully someone of our people who are more versed in the test results will be by to give their input soon.

Do hang in there! We know this is very, very hard.

Sharlene

[molly muffin]

Oh this one seems to be an update blog of someone with a SARDS dog,

http://sardsdog.blogspot.ca/

I found it while reading this site:

http://www.blinddog.info/msgbd/viewtopic.php?t=226

Sharlene

[Peppy]

Hi Sharlene. Yes the unit measurement at the far end of the cortisol tests is "nmol/L".

I HAVE NOW ADDED THIS TO MY PREVIOUS POST Hope this helps.

Looks to me that the cortisol readings dropped after the administration of the VETORYL. Isn't this what we want?

[labblab]

Yes, a cortisol drop is indeed what you are looking for with trilostane treatment. But Peppy's monitoring ACTH results remain higher than the desired therapeutic range for a Cushpup taking trilo. Here's a link to a Treatment and Monitoring Brochure published by Dechra (manufacturer of brandname Vetoryl). You will see that if the "post" ACTH result is higher than approx. 9.1 ug/dl (250 mnol/L) at the 30-day mark, the expectation would be to increase the dose, especially if Cushing's symptoms remain unresolved. How is Peppy doing in that regard, in terms of symptoms?

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

In interpreting both of Peppy's ACTH tests, I am not sure why your vet/lab has opted to perform two "post" ACTH draws. We have seen that on occasion, but the more standard approach is to perform only a single "post" ACTH draw, either one or two hours later depending upon the type of stimulation agent that is used. That is why you will see only a single "post" number referenced in Dechra's published materials.

Regarding Peppy's initial diagnostic ACTH test, the 1-hour "post" is somewhat elevated and the 2-hour "post" is markedly so. So I do believe either of those results would support the Cushing's diagnosis. But for future reference, I'd be curious as to why your vet is electing to perform two "post" ACTH draws on Peppy's tests.

Just to double-check, was Peppy's second, monitoring ACTH performed 4-6 hours after dosing? And was his trilostane given alongside his breakfast? In order to compare apples-to-apples in conjunction with Dechra's dosing recommendations, it is important that the monitoring testing be performed in a uniform manner. And if the dose is not given along with food, the medication will not be metabolized efficiently, leading to the risk that the result will be skewed upward (higher) than normal.

Thanks in advance for your answers to these additional questions!
Marianne

[labblab]

Oh this one seems to be an update blog of someone with a SARDS dog,

http://sardsdog.blogspot.ca/

I found it while reading this site:

http://www.blinddog.info/msgbd/viewtopic.php?t=226

Sharlene
Hey Sharlene,

I have previously seen and read many excerpts from this Sardsdog Blog. It is an example of one of the owner testimonials to the benefits of the treatment recommended by Dr. Plechner and Caroline Levin. Due to her experience with her dog Reo, the owner Lynn believes that the treatment protocols were very helpful. However, in reading through the Blog, two pieces of information have been troubling to me.

Even though Lynn firmly believes that Reo's vision improved under the treatment, when Reo was re-examined by the opthalmologist, there was no objective evidence that any functional vision had been restored. Secondly, after agreeing to administer the treatment for a period of time, Lynn's own vet later said that she (the vet) could no longer participate because she believed the treatment was actually harming Reo. After an exhaustive search, Lynn was able to find an alternative vet who would administer the steroids, etc., and she believes that Reo subsequently improved as a result. But these two pieces -- lack of any objective evidence of improvement and the possibility of harm -- are enough to raise many red flags for me re: Dr. Plechner's treatment protocol.

Marianne

[Peppy]

Hi Marianne. Since it was almost a month ago, my wife believes she gave Vetoryl along with food in the morning as we try to follow the instructions.

Is 30 mgs a large dose to continue to lower the cortisol? Is it safe to keep at this dosage?

Peppy's symptoms have improved. He seems to be drinking less, panting less, eating less and possibly losing a little weight but we have not yet weighed him on an accurate scale.

[molly muffin]

Oh Marianne. I didn't realize it was one of the testimonial sites for Dr. Plechner. :(

There is so little information out there concerning SARDS and Cushings jointly and treatment. Other than what we have in our resource, it is difficult it appears to find any abundance of studies written in any of the journals or university studies being done. :(

I think in light of that I might start calling around to find an IMS who has treated SARDS and Cushings jointly.

I wonder, are you in Canada by any chance? I ask because I'm in Canada and my vet did the 2 hour draw too. It's because Canada doesn't seem to use the same agent as most places do for the ACTH.

Do you know Marianne if it would make a difference in the results between using the two agents? I know it it shouldn't, but... curious.

Sharlene

[labblab]

Given Peppy's weight of 17 pounds, 30 mg. of trilostane represents a dosing formula of approx. 2 mg. per pound. You will see that Dechra's published literature references an intial dosing range of 1-3 mg. per pound, so Peppy is right in the middle of that range. We usually encourage people to start at the lowest end of the range, but given Peppy's monitoring ACTH results, it doesn't appear as though he is at any danger of having his cortisol drop too low, and he may actually benefit from a dosing increase in the future.

However, since you are seeing improvements in his symptoms and he is suffering from the not-yet-well-understood combo of SARDS and Cushing's, I probably would be tempted to leave things status quo for another month or so myself.

And by the way, I just now noticed that your wife is giving him Adrenal Harmony. In Googling it, I discovered that it is a new name given to an old product with which we are sadly familiar: Supraglan :o. This product is marketed as a miracle cure, but again, there are no research studies or genuine evidence to substantiate any of the claims. One of our Administrators even wrote directly to the company asking for substantiation of the claims, and received no satisfactory reply. Since Peppy is now taking the trilostane, if it were me, I would discontinue the Supraglan. There is no solid evidence that it is helpful, and I would not want to run the risk that any of the ingredients might be interacting negatively with the trilostane.

Marianne

[Peppy]

I am not sure why the 2 draws. In discussing with my wife, she said our Vet is 99% sure Peppy has Cushings. Yes, I am from Canada.

Thank you for the SARDS blog. Yes I have read that one. I am skeptical of doctors who offer alternative treatments without peer reviewed and studied protocols. I believe if it truly worked, it would get out there and eventually become peer reviewed, studied and documented. But I sincerely appreciate your efforts. It's just that there are so many charlatans out there trying to make a buck off those of us who are suffering.

[molly muffin]

Hi, yes, I didn't realize that site was another of the "self promotion" ones. Marianne caught it for us though. :( I am exactly with you. I want some scientific studies, lab results confirmed via testing if I am going to use it on my pet.
I too am from Canada and it looks like we use a different agent for the ACTH test here or perhaps it is just what our vets are taught in University to do. Not really sure why either.
I wonder if any of the Universities of Vet Med would have any ideas on SARS issue. Guelph in Ontario and there are others in the other provinces. It might be worth contacting them about the Sards/cushings combo and see if they have any insight to treatment, confirmation of results for cushings vs SARDS.

My vet was sure my Molly has cushings too and it could be that in time she will prove this so. A high ACTH test, but then a completely normal LDDS test so we have not treated yet. This is how I came to be on this forum in fact, it was just so confusing. I've since learned that this is the nature of Cushings. So many other things can mimic the same results. SARDS, Thyroid, etc

Sharlene

[molly muffin]

Ahhh Haaa! Found it! There is an article by Dr. Peterson, who discusses the ACTH test and the agent used to conduct the test. I'll retype the pertinent part to those of us here in Canada that seem to always have a base, 1 hour and two hour draw.


Alternatively, compounded forms of ACTH can be purchased from several veterinary pharmacies. It should be noted, however, that the bio availability and reproducibility of all of these compounded formulations have yet to be carefully evaluated. A recent study in dogs evaluated four compounded ACTH preparations and compared their cortisol responses to that of cosyntropin. The data of that study showed that injection of the four compounded forms of ACTH increased serum cortisol concentrations to a similar magnitude as cosyntropin in samples collected 30 and 60 minutes after ACTH administration. However, serum cortisol concentrations at 90 and 120 minutes post-ACTH varied considerably, depending on the preparation of the ACTH injected, with two compounded forms of ACTH producing much lower serum cortisol concentrations. Based on such variability in cortisol responses between compounded forms of ACTH, these investigators recommended determining serum cortisol concentrations at both 1 and 2 hours after ACTH administration when using a compounded preparation. overall, the determination of a third cortisol concentration would likely offset any presumed cost-saving derived from using a compounded ACTH product. In addition, because the potential for lot-to-lot variability in compounded ACTH formulations has not been evaluated, one should consider assessing the activity of each new vial by performing an ACTH stimulation test on a normal dog.

So, we end up with 1 hr and 2 hr, because the vet is using a compounded ACTH for the testing. I have no idea if this is Canada wide, why it is more prevalent here and not seem in other places world wide, but at least we know why.

This is the article link by Dr. Peterson: http://www.2ndchance.info/cushingspeterson2007.pdf

Sharlene --> (in Ontario, apparently using a compound testing agent for ACTH)

[Peppy]

My wife just asked me to post that Peppy is also on a liver supplement from the Vet called zentonil plus (s-adenosylmethonine) 200 mg per day, $70 per month. Forever supposedly.

[molly muffin]

That shouldn't be a problem. However, just so you know, Zentonil Plus 200 mg, 30 Tablets, at amazon.ca is 39.41. I pay about the same for Hepeto support supplements 90 day supply from my vet.

Sharlene

[Peppy]

Thanks so much Sharlene.? We will order it from amazon from now on. I wish there were more members with blind dogs on this forum as this place is very helpfull and supportive. I have posted on a blind dog forum but there is little to no activity there.

My wife is having a hard time coping with a blind cushings dog.

[molly muffin]

Well of course she is. I cannot imagine the devastation to be felt from going to a happy, playful seeing dog, to cushings, to blindness, all in a matter of months. I am sure that it is horrible.

We are actually a very supportive and active forum. I don't know if you have had the time or inclination to go through the various threads that are updated daily, but if so it can give you some idea of what others on here are going through at any given time. You can find the cushings threads here if you want to browse them: http://www.k9cushings.com/forum/forumdisplay.php?f=9

Some days are more active than others, as on any forum. I think that SARDS, is not very common or frequent but it is certainly devastating.

Unfortunately our most active member with a blind dog (completely blind) is currently taking a bit of a break after losing one of her beloved pets, but I'm sure she will be back eventually so don't give up hope on that.

You can also try searching on SARDS, Blind, etc at the top in our search box and perhaps find threads that might be relevant to your situation.

Sharlene

[Peppy]

I forgot to mention here that The opthamologist said Peppy has dry eyes and sold us some eye drops for $70. He said they compounded the drops themselves therefore the higher quality and hire price.

His whites of his eyes are reddish. The drops do not seem to do much in regard to the redness.

We were wondering if anyone knows if the dry eyes are a side effect of Cushings and or the Vetoryl medication he is on or if it is a symptom of SARDS and why is this all happening at once?
Are they anyway connected?

[molly muffin]

Some dogs with cushings develop dry eye syndrome. This is an an article about it:
http://www.gopetsamerica.com/dog-health/dry-eye-syndrome.aspx

When it rains it pours and your Peppy has certainly been through so much lately. The drops will probably be needed for the rest of his life to keep the cornea moist. Some type of eye drops I should say. Perhaps not the special mixed one will always be needed and once the current situation is under control you can move to a moistening eye drop. They are probably very concerned about infection at this time and getting this under some sort of control.

Eye issues can be difficult to treat at the best of times since the drops need to be administered quite frequently (we've had several members going through eye issues, ulcers, etc) I don't know the relationship to SARDS, but since there is already eye damage that is probably an aggravating factor, just as the cushings is.

Did you receive your vest yet? If so how is that working out for Peppy and your family?

Sharlene and Molly Muffin

[lulusmom]

I forgot to mention here that The opthamologist said Peppy has dry eyes and sold us some eye drops for $70. He said they compounded the drops themselves therefore the higher quality and hire price.

I am pretty sure your opthamologist is compounded cyclosporine and I'm also pretty sure s/he is handing you a line of hooey about their making a higher quality product. I've had two dogs on cyclosporin drops and their opthamologist didn't mind giving me a prescription so I could order directly from Diamondback Drugs, the compounding pharmacy I use for all of my pets' medications. I was blown away that I got a much larger amount for less than half the price of what my opthamologist was charging. Specialists always charge a lot more for drugs and I don't believe it's because their staff pharmacist makes superior product. Cushing's is an expensive disease to diagnose and treat so your eye vet should be willing to work with you on this and not hold you hostage to their pharmacy. If I were you, I'd do some price checking and ask your opthamologist to either give you a script or give you the product for the lowest price you found in your price checking.

In addition to my own cushdog, we have had other members report that their cushdogs had chronic dry eye. Dry eye is a very common problem in otherwise healthy dogs and there is no evidence that it is symptom associated with cushing's. Cushing's and SARDS do tend to have a common thread, being hyperadrenal activity however unlike typical cushing's, adrenal function normalizes for most dogs with SARDS within a year of diagnosis. Only a small number of dogs with SARDS really do have a pituitary tumor, which is the most common cause of typical cushing's.

Glynda

[molly muffin]

Glynda is much more knowledgeable and experienced than myself and so based upon what she has said, I would be having a chat with that ophthalmologist vet about what the compound they sold you actually is. I don't know if Diamondback can ship medicines to Canada, but there should be a compounding pharmacy that would be cheaper than the $70. within Canada if not.

Glynda, a question, since seldom does a dog with SARDS, really have cushings, should they be treating for cushings? Actually I think reading the thread, that cushings was diagnosed first, treatment began and then SARDS occurred. Correct me if I'm wrong Peppy's dad.

Sharlene and Molly Muffin

[Peppy]

Thank you Sharlene and Glynda.

Yes, first came the Cushings diagnosis, (associated with it were all the typical symptoms), then we noticed his vision deteriorating, our vet thought it was cataracts. As his vision rapidly deteriorated to blindness, we asked to be recommended to an opthamologist.

About 2 1/2 weeks ago he was diagnosed with SARDS and dry eyes.

[Peppy]

Just checked. The eye drops are called Tacrolimus 0.20%. 10 ml bottle.

[labblab]

Glynda, a question, since seldom does a dog with SARDS, really have cushings, should they be treating for cushings? Actually I think reading the thread, that cushings was diagnosed first, treatment began and then SARDS occurred. Correct me if I'm wrong Peppy's dad.

Sharlene and Molly Muffin
Glynda may have some alternative thoughts about this, but the info on our Resources forum suggests that, even though uncommon, some dogs do suffer from both SARDS and Cushing's.


A routine blood and urine work up in these patient may reveal changes which are suggestive of hyperadrenocorticism (Cushing's Syndrome). If these tests are followed up with specific testing for Cushing's (low dose dexamethasone suppression test, ACTH stimulation test) some cases will be confirmed as Cushingoid. These patients should be treated for their Cushing's syndrome, but this will not restore vision. The relationship between Cushing's syndrome and SARDS is not known.

http://www.eyevet.ca/sards.html

Since Peppy did test "positive" on an ACTH and his symptoms are improving since beginning the trilostane treatment, I would think this lends reason to believe that the Cushing's diagnosis is indeed accurate in his case and that he will benefit from continuing treatment.


Peppy's symptoms have improved. He seems to be drinking less, panting less, eating less and possibly losing a little weight but we have not yet weighed him on an accurate scale.

[Peppy]

We also noticed Peppy making funny sound when he kies down to sleep with us at night. It's sounds like a kind of snoring.

[molly muffin]

Could it be snoring? Like he's sleeping more deeply?

Molly makes horrid noises sometimes, (most of the time) when she is sleeping these days. I thought she was in mortal pain yesterday and when my husband went to check on her, she was really deeply asleep and perhaps dreaming.

Hopefully that is all it is.

Sharlene

[Peppy]

Maybe it is snoring, Sharlene. That leads me to my next question I have been meaning to ask. Peppy is zonked by the end of the day. Exhausted! Drained. Goes to sleep faster and earlier. And He sleeps like a rock. Doesn't move an inch. He almost seems dead. Is this part of the Cushings or do you think he is drained because of SARDS and being blind trying to find his way around. He never slept so deeply before all this happened. He actually doesn't want to get up in the mornings. He sleeps longer and much much deeper than what is normal for him.

[molly muffin]

I don't know why he would be sleeping more and deeper other than there is alot going on and when they don't feel well, they sleep. (the dry eye, SARDS, cushings, all takes it's toll) If however, you notice anything like, not eating, no drinking, lethargic, then you know to with hold the Trilostane dose and get an ACTH check to see if his cortisol has gone to low. So far, it doesn't sound like that, just something to remember in general though.
Actually I have noticed over the past year that Molly too, sleeps very deeply and snores like I think she is in pain but it's just her snoring. I wondered if her hearing was starting to go a bit or something the way she can sleep so deeply and not move at things she use to jump right up about.
Sharlene

[Peppy]

Here is the latest. Our vet has been brainstorming with other vets professors. ( Apparently the best of the best. ). Our vet did not want Peppy to remain on medication if he was suffering from SARDS symptoms and not the cushings. He said not all the bloodwork was conclusive of cushings. They all recommended we stop the medication and observe the symptoms.

It seems that his increased hunger and thirst are returning, along with his lethargy. This morning he really seems to be down in energy and spirits. It's all too soon to tell since we stopped the Vetoryl 1 week ago. I'll keep you all posted.

[labblab]

Please do keep us posted! I think the proof will be in the pudding. Since Peppy did test "positive" on the ACTH and his symptoms seemed to improve while taking the trilostane, he may indeed be one of the dogs who suffers from both conditions. But if so, you'll discover that upon a full return of the symptoms while off the medication. So I can't fault your vet for this trial run, and it will be interesting for us (and of course, really important for you guys) to see how things develop.

Marianne

[molly muffin]

How is Peppy?

It's good that you have a vet who will work with others and who wants to figure this out for you and for Peppy.
I think it's a case of taking a step back and trying to see what is really what and if what they thought to begin with is correct. We'll all be very interested to see what happens and your journey may help others along the way. SARDS is not common and every bit of information gathered adds to the collective knowledge for those who will follow.
Hope that makes sense.

Sharlene and Molly Muffin

[Peppy]

Help!
We took Peppy off Vetoryl 1 week ago and The last 2 days Peppy has had zero appetite. Not interested in food. Not drinking either. On top of that, he seems very lethargic, lazy, just wanting to lie around the house.

I thought Cushings increased appetite and thirst?

[lulusmom]

Cushing's does usually increase the appetite but low cortisol and even pancreatitis will kill the appetite. Peppy needs to be seen by your vet to determine what is going on. Remember that only a minority of dogs with SARDS have cushing's. Hyperadrenal activity, including transient elevations is cortisol, usually resolves within months of the onset of blindness. Therefore, Peppy's cortisol could be too low or there is also the possibility that the pancreas is involved. Here is a direct quote from Dr. Grozdanic at ISU regarding dogs with SARDS.


We are more concerned about hypothyroidism and potential pancreas abnormalities, rather than clinical sign of hyperadrenocroticism, since in majority of patients, clinical signs of Cushing’s disease spontaneously resolve on their own.”

While the majority of dogs with SARDS do not have cushing's, results of a UTK study showed that most have elevated cortisol and sex hormones. Summary of UTK study is below:


The majority (11 of 13) of SARDS cases were found to have elevations in one or more sex hormones. Of these elevations, the most common were in 17-OH progesterone and progesterone. Additionally, cortisol was elevated in nine of 13 dogs. All of the dogs with increased cortisol had increased poststimulation values. Importantly, stimulated values (basal versus feedback) give the most information in regard to adrenal activity.23 The majority (nine of 11) of dogs demonstrated an increase in both cortisol and sex hormones. A minority (three of 13) of dogs exhibited only an increase in adrenal sex hormones, and these dogs would not be identified on routine HAC screening. Clinical signs of HAC were associated with abnormal stimulation values in 92% of cases. Only one dog was found to have clinical signs of HAC with normal ACTH stimulation results.

[molly muffin]

Just stopping in to wish you, your wife and Peppy a Merry Christmas and a safe and wonderful holiday
season.
How is Peppy doing now?

Hugs,
Sharlene and Molly Muffin

[molly muffin]

Hi. Checking in on you to see how Peppy is adjusting and how the cushings is.

We've had a couple new dogs on here diagnosed with SARDS. Amazing how I had never even heard of that until this forum. There is always so much that it seems we don't know.

Anyway, I hope that all is well with your family and peppy.

Sharlene and Molly Muffin

[Peppy]

Unfortunately for Peppy, we are back. We stopped the Vetoryl because we needed to see if the SARDS/cushings symptoms would leave Peppy. Well they haven't and we are on Vetoryl again with confirmed Cushings.

He sleeps with us and it is very hard because he gets up at night panting heavily and needs to drink.

He has been on the Vetoryl for 2 weeks now. No improvement yet.

[Peppy]

Boy oh boy! Peppy kept us up last night. He was up panting and restless, needing to go out several times. Any suggestions?

[labblab]

Peppy may need a dosing adjustment. Can you remind us as to his weight, his dosing history, and the numerical results for all monitoring ACTH tests that have been performed?

Thanks so much in advance for this info,
Marianne

[Peppy]

Peppy has been on 30 mgs for approx 2 weeks now, under Vets supervision and testing. I do not have the testing results handy but will look into the most recent results for you. I know it takes time to control the cortisol, but is there any way to handle the restlessness and panting at night?

[Roxee's Dad]

Just a quick summary I gathered up....

Peppy is an 11 y.o. poodle weighing in at 17 pounds as of last December and was on 30 Mgs of Vetoryl

Last published testing results...

ACTH
Oct 18, 2012
base 2.56
1 hr 25.69
2 hr 37.44

ACTH
Nov 19, 2012 (after vetroyl treatment)
base 3.32
1 hr 14.89
2 hr 17.47

[frijole]

Peppy has been on 30 mgs for approx 2 weeks now, under Vets supervision and testing. I do not have the testing results handy but will look into the most recent results for you. I know it takes time to control the cortisol, but is there any way to handle the restlessness and panting at night?

Restlessness and panting at night are symptoms of the cushings. Lower the cortisol and it goes away. Kim

[labblab]

It is also a possibility that Peppy will do better if he receives a half-dose of the trilostane every 12 hours rather than the single dose once in the morning. Dogs vary as to how quickly they metabolize the drug, but for most dogs, it has completely left the system within 18 hours after dosing. Sometimes this means the Cushing's symptoms will rebound at night even when they are being controlled properly during the day. Peppy should be scheduled for a monitoring ACTH test right about now. Those results will give added guidance as to the desirability of perhaps splitting his daily dose.

Marianne

[Peppy]

Thank for the help. Yes he is going in soon for another test.
But, is there anything my wife and I can physically do to reduce the night disturbances so we can get some sleep?

Ie: a long walk before bedtime? Feeding him b4 bedtime? Etc.

[molly muffin]

It never hurts to give them a walk right before bedtime, and allow for plenty of time to make all the stops to get his bladder empty. I'd guess though that it is the uncontrolled cortisol levels that are causing it.

Sharlene and Molly Muffin

[Peppy]

I'm back. Peppy had his recent ACTH test in August. The vet recommended the Vetoryl dose be reduced to 10mgs.

He has been at that dose since September. Here is our concerns and what we noticed.

-He appears to still be gaining weight. Peppy has alway been a very fussy eater, very lean and healty until Cushings and SARDS and when we noticed he was blind last November.

- on the reduced dosage of 10mgs, Peppy still has the Cushings symptoms. Continuous ferocious appetite, almost will eat anything which is not in his nature. Drinks very often. Panting and restless every night. Since he sleeps on our bed, he gets us up almost every night with his panting, needing to go outside, and because he is now blind he does not know where the edge of the bed is anymore which makes us uneasy and sleepless.

The vet want to do the test every time we consider a dose adjustment. We are reluctant because we wonder if the test does harm and because it is getting expensive.

For the last week my wife has increased the does to 15 Mgs by splitting the capsules however the instructions say not to split the caps yet the Vetoryl is not available in 15 Mgs. What do we do?

I hate to see him getting so fat. He is not the same Peppy. He used to be so lean before the Cushings. He still goes for his daily walks but at a slower pace.

He also seems to be making funny sounds breathing at times. We assume its due to his weight gain.

Please help with the confusion. His symptoms do not seem to be going away.

[spdd]

I don't know where you are from but there are pharmacies that compound the medication. I had my dog on 58 mgs.

I am no expert and still don't have my dog diagnosed yet, but others on here will give you the advice you need. I just wanted to let you know that you can get it compounded.

[Squirt's Mom]

It would help us a great deal if you would get copies of the ACTH done in Sept. so we could see why the vet wants to lower the dose in the face of increasing signs. Based on the signs you are describing, it does sound as if the dose needs increasing, not decreasing, but until we see those test results, we are flying blind. ;)

DO NOT open those capsules to split them! :eek: You can get Vetoryl compounded into any dose size that isn't made by the manufacturer. In other words, you can't get 10mg compounded but you can get 9mg or 6mg or 1mg, etc. compounded. Your vet will have to provide a script for the compounding.

Your vet is absolutely correct in telling you that an ACTH MUST be done with every dose change. In fact, with every dose change the ACTH testing schedule starts all over. You will have an ACTH done at the 2 week mark, the 30 day mark, the 90 day mark and every 90 days after for life as long as Peppy is controlled. IF he's not controlled and the dose needs to change, you will go back and start the testing schedule all over with the 2 week testing. It is stressful for some pups to go to the vet period but the test itself is not harmful tho we sometimes see a bit of restlessness after. Vetoryl (Trilostane) often requires dose adjustments which tends to make this drug expensive to use. There is a way to save a little, tho. Here is a link to share with your vet -

How to Extend Your Supply of Cortrosyn and Lower the Cost of ACTH Stimulation Testing
http://endocrinevet.blogspot.com/2012/03/how-to-dilute-and-store-cortrosyn-for.html

I have two blind babies; one can sleep on the bed with me because I swear she has bat sonar! She rarely bumps into anything and will maneuver through things as if she sees them all. The other is my Pin Ball Boy - he bounces into everything! My house will never win the Good Housekeeping award because it is bubble wrapped for my boy's protection. He has no concept of depth or edges at all and will walk right off the bed so he sleeps in his little Box (plastic carry case).

It's good to hear from you again but wish things were going better for our sweet Peppy. Please do get those test results and we will be better equipped to help.

Hugs,
Leslie and the gang

[Peppy]

Thanks for the reply. We initially had a large supply of 30 mg caps left over after the recommendation of going to 10mgs. We feels our vet is very good but he probably has goofed on this one. He recommended we split the caps in half to 15 Mgs to use up the 30mgs we have. That is what we have been using.

We do not have the ACTH test. The vet has them.

One more thing. Peppy has been getting warts after his vaccine in the spring. Any knowledge on these warts would be appreciated.

He also seems to have a small lump on his belly. Too big for a wart.
We will have the vet look at the lump soon.

[molly muffin]

A compounding pharmacy can break up the capsules for you and redo them into the appropriate size. It's just that this isn't something you want to be handling yourself, which is why Dechra recommends against it.

My molly has warts too, and my vet had told me that this is something that occurs as they get older. She also has the fatty lumps, which I had checked out, they were lipomas (fatty). They can do a needle aspiration to check if you want that, but yes, always good to get them looked at to be sure. Most vets I think can tell by feel.

Sharlene and Molly Muffin

[Peppy]

Since 9:30 pm tonight (like every night) peppy is panting like crazy and very restless, pacing everywhere.

Why is this Vetoryl not fixing this? He doesn't seem to be getting better. He has been on Vetoryl for months.

[Roxee's Dad]

Is he on twice a day dosing? Maybe discuss the possibility with your vet. Trilo is only active in the system for about 12 hours.

[Roxee's Dad]

Please do get copies of Peppy's last ACTH test and post them so we have a better idea. It seems from your earlier post that his cushings is not controlled yet.

[Peppy]

Is he on twice a day dosing? Maybe discuss the possibility with your vet. Trilo is only active in the system for about 12 hours.

No, we are dosing in the morning only? If we split dose, what times should we use?

[frijole]

Note do NOT split open the capsules. When people do split dosing it means they have capsules that are smaller in size that they give twice a day. You can't open up the capsules and pour it - per the manufacturer Kim

[labblab]

In addition to safety issues, the Vetoryl may not be metabolized properly if the capsule has been opened and the powder just poured onto food. The way in which a drug is packaged and "delivered" to the body can make a huge difference in the way it is absorbed and goes to work.

So right now we have three important issues with Peppy.

1) What were his September ACTH results -- was his dose rightfully lowered?

2) Would he do better with half the daily total given every 12 hours so that his cortisol level remains controlled more consistently?

3) The medication needs to be administered in intact capsules.

Please, please get us those ACTH results because they are key to all subsequent dosing decisions.

Marianne

[Peppy]

Thanks everyone. We will try to get the test results. Last night we gave him the Vetoryl at 6 pm instead of 9 am. We noticed a possible improvement in that he was very tired early. He actually crashed out on his bed in the kitchen while we were watching Tv in the family room.

Our question is, does the Vetoryl make him tired and lethargic.
We have noticed him sleeping and lazy in the mornings when we dosed him at 9 am. All he wanted to do is sleep in the mornings after a restless night and with the 9 am dosing. We attributed that to him not sleeping well. But after last night, we noticed he slept like a rock, with the 6 pm dosing. It was the first peacefull night sleep for us and him in a few months.

So is tiredness part of the symptoms of the drug?

[Harley PoMMom]

Lethargy is listed as one of the side effects of Vetoryl.


ADVERSE REACTIONS:
The most common adverse reactions reported are poor/reduced appetite, vomiting, lethargy/dullness, diarrhea, and weakness.

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

Hugs, Lori

[Peppy]

We are dosing Peppy at 6:00 pm. He seems to sleep a little better this way although he still gets up a couple of times panting so we give him a drink and this seems to cool him off.

At night, around 8pm, he still is very very disoriented pacing all over the house, panting like crazy bumping into everything. He seems to do this for about 1/2 an hour each night.

Any idea if this is the Cushings? Is the Vetoryl working ? It sure doesn't seem to be doing a darned thing. He still is hungry as a horse. He still drinks like crazy. He still seems to be gaining weight.

What's going on?

[frijole]

When was the last acth test and what were the results? Everything you mentioned from the restlessness, the pacing, the panting, the weight game are ALL signs of cushings which would mean the cortisol is still too high and it is not under control with the dose you are on.

The vetoryl has a short life in the body and it wears off. So the reason your dog is calm is because the cortisol goes down.

FYI I understand why you switched from morning to evening dosing but this will not work because when you do go in to have an acth test you must have the bloodwork done 4 to 6 hours after the last dose. That would mean you would have to have it done by 10 pm and most vets wouldn't be too keen on that. If you don't do the test within that timeframe the test results are not valid.

Assuming the test results will come back too high you have two choices - one is to increase the dosage and give it in the mornings and the second is to increase the dosage but to split it evenly and give 1/2 in morning and 1/2 in evenings. Note you cannot split the capsules so you would have to purchase small mg capsules and give one in the morning and one in the evening.

Looking forward to the last acth results. Trust me - your dog is normal for a cush dog that has high cortisol. Here's a link for reading up on it. Kim
http://www.k9cushings.com/forum/showthread.php?t=180

[Peppy]

Ok, off to the vet again. We will do another ACTH test. This Vetoryl seems to be doing nothing. His health appears to be declining. He keeps getting bigger. So sad and frustrating.

[frijole]

Before going to the vet please let us know what the last results were so we can discuss the current dosage. Hang in there - tweaking of doses is often necessary so don't get discouraged. Kim

[Squirt's Mom]

Please note what Kim told you -


FYI I understand why you switched from morning to evening dosing but this will not work because when you do go in to have an acth test you must have the bloodwork done 4 to 6 hours after the last dose. That would mean you would have to have it done by 10 pm and most vets wouldn't be too keen on that. If you don't do the test within that timeframe the test results are not valid.

So giving Peppy the Trilo last nite and having the ACTH this morning is useless - it will NOT give an accurate reflection of how well the drug is working. ;)