Ebon Progress and ongoing stuff

[MiamiThom]

Hey everyone. So glad to find this site/group. :)
I have a 10 year old cocker spaniel named Ebon.
After two years of endless vet visits treating skin conditions, hypothyroidism, horrible hair losses, excessive panting - our son has been diagnosed with Cushing's and related to the pituitary. I did my crying for like an hour and not sure why, but a friend suggested I come and find a group online for others who have gone through this before. So, glad I found a "tribe" to hang with here.

I think right now my biggest concern is the impact of the drug we will start him on next week. We will be starting him on Trilostane. I just want to make sure he will be oka, as I read online that often the side effects are worse than the disease. Is that true!

I just want him to be itch free and his skin and hair renewed to make him comfortable.

We have been giving him Cushex drops too and we have seen his energy and alertness increase, but vet says these are supplements, not a treatment for the disease.

Thanks for letting me be part of the group. I will read previous posts over the coming days.

Thom

[labblab]

Hello, and wecome to you and Ebon. We are so glad you've found us! :)

I have only a moment to post right now, but I do want to direct you to a thread on our Resources forum that contains a lot of helpful info about trilostane (Vetoryl). Since you already know that you will be starting treatment next week, I especially encourage you to scroll down to the second post in the thread -- the one that discusses revised lower dosing recommendations. You will see that the most generally accepted current protocol is to begin dosing at an amount that does not exceed 1 mg/lb (or 2mg/kg.). Probably one of the most important things you can do to try to prevent unwanted side effects or an unproductive experience is to avoid overdosing your dog with the medication. Here is that link:

http://www.k9cushings.com/forum/showthread.php?t=185

It will be great if you care to share any more specifics re: Ebon's overall health situation, as well as the actual diagnostics that confirmed the Cushing's.

Thanks so much in advance, and good luck next week!
Marianne

[SoggyDoggy]

Hi Thom,

I'm not really active on the board anymore having lost my boy (to cancer) more than 18 months ago. But I did want to say to you that you have probably found the best resource around for researching Cushings in dogs (our kids). The people here are truly amazing in their knowledge and support and will be with you all the way through this confusing and somewhat scary journey (only scary because we love our dogs so much and hate the idea that they may be sick). The trick is to ask questions, read up as much as you can, provide information about Ebon and know that you will get some great advice and help. Work with your vets, learn and you will hopefully see great progress. Cushings can't be cured in most cases (unless surgery is an option for some) but it can be successfully treated and life can return to almost normal when you hit the right balance.

I found over our journey that I became closer to my boy as I was watching him so carefully to learn his signs, I knew when things weren't right with him and that's an important thing. You will know Ebon better than your vets so it is important that you become his voice, and no matter how silly you might think it is, know that no question can ever be too dumb or too obvious. Chances are if you're wondering, someone else might be too. Also don't be afraid to question your vet if something doesn't make sense to you.

One of the most valuable things I learned was to ask for copies of all test results. Keep them together in a file and learn for yourself how to read those results. Should something happen after hours, it's a good thing to have copies of latest test results on hand if you need to visit another vet for any reason. It also means you have a copy to refer to for when/if you want to post results here for comment and further advice. Remember that the mods here have been dealing with this disease for a long time, some many years over many dogs, and they can and will help if they can.

And last piece of info, know that you CAN stop trilostane suddenly should you want or need to. It is quick to leave the system with a short half life, so in that part there is a degree of safety in it. Only if the levels drop too low should you need to worry, but if you work with your vets, monitor closely and test on schedule (be warned, it can be quite expensive) you shouldn't have any worries, be sure to keep some emergency pred on hand though just in case. Your vet will walk you through all this I should think.

Anyhow, good luck, start slow and work your way up. It's not a quick process but it can be a very effective one when you hit the right balance. (Were it me, I would abandon the cushex drops, it's like a bandaid). Post some further info on Ebon like weight, previous test results etc and start your reading.
Take care!

[molly muffin]

Hi, I think as long as you start at the appropriate dosage that Marianne mentioned 1mg/1lb, then Ebon should be fine on vetroyl.

You mentioned itching..does Ebon have allergies? Have you tried some benadryl for that?

[Barb]

Hi and welcome. You have found the best "tribe" in the world.

I would not give the Cushex drops. I don't think they help.

Once you get the proper amount of correct medicine from the vet you will see a big difference. Just make sure they don't start him out a too high of a dose.

My cush girl passed in 2008 age 16 and she was on selegine for 6 years with no problems. I know this drug is not used much any longer.

There are much more knowledge people on here than me and I'm sure they will be chiming in soon.

[MiamiThom]

Marianne:

Thanks for the information and the additional link. I have printed a bit of it to remind me of what I need to know and to allow me to track the results of the medication with the lab work we will be doing. Ebon weighs 46.5 lbs and he has been started on 30mg initially. We will be doing blood work next Saturday to test the effectiveness thus far and determine where to head from there. And, as Naomi mentioned... it is costly. It is costing us $240 for the test and another $68 for the thyroid test we need to also do.

Thanks again and I will keep checking back.

[MiamiThom]

Naomi:

Thank you for all the wonderful suggestions and heads up. I also want to say I am sorry for your loss and so touched that you're still so active in responding in light of the loss. That means a lot. We will make sure to have the lab work on hand and that we are understanding and asking questions, regardless of how foolish we may feel.

I am waiting for the other half to send me the lab results, but the low dose Dex test came back inconclusive for the cause of Cushing's (i.e. adrenal tumor versus pituitary). The high dose test came back and signified it was coming from the pituitary gland. As mentioned previously he weighs 46.5 lbs, has hypothyroidism, and he also has hip dysplasia.

Will give more info as it all becomes available. Thanks for sharing and pointing us in the right direction.

[MiamiThom]

Sharlene:

Ebon has severe seborrhea that they think is secondary to the hypothyroidism or Cushing's. They want to get his levels right with these two issues and see what resolves with the skin before doing allergy testing. The Dermatologist says she wants to isolate the various aspects so we know what we're really dealing with, which I can appreciate (as well as my wallet).

[MiamiThom]

So, really cute story and then I am done for the day...

Last night we bathed Ebon and he was content like usual. Then, as we washed his sister he came busting in the bathroom and into the shower WITH her to see what she was up to. he gave her a few kisses and then ran back out and did this a couple of times during her bath. So funny! He has never done this - ever! After they were both out she went to pick up a ball and he actually ran around with her trying to get the ball from her. Again, not normal energy for him.

While I know the dosage of 30mg is probably not even close to being enough for his 46.5 lb body - this was really amusing and funny. Had to share.

[Harley PoMMom]

AAAWWW! I bet that was so funny to see!! And ya never know, 30mg just might be an adequate dose for Ebon. Glad to hear his treatment is going well and that he is feeling better...keep us updated!! ;)

Hugs, Lori

[molly muffin]

You never know what the best dosage will be, every dog can respond differently, so you start and see. Now the first test should be around day 12 - 14 optimally of the first dose. Keep in mind that on the same dose, the cortisol will continue to drop for usually at least 30 days, some even longer. So, you want to use your tests and money wisely and not schedule too soon or too long out.

That is so funny. Ebon has found his inner energizer bunny!!

[MiamiThom]

So, today is around day 9 of the 30 mg of Vetoryl. I am curious about others experience of it. Ebon's energy is a little waned, not greatly. But... His water consumption is greater than it was before he went on the medication. His panting has increased, instead of decreased, and he has very loose stools more than 4-5 times a day now for the last 4 days.

Trying to be a overly concerned, reactive parent, but I know the literature that comes with Vetoryl says to call the vet with side effects such as diarrhea, etc.

Any thoughts or wisdom?

[MiamiThom]

Marianne:

Here are Ebon's test results:

April 21 2015 - Low Dose Dex Test
Time 1 9.8 ug/dL
Time 2 3.4 ug/dL
Time 3 6.5 ug/dL

May 3, 2015 - High Dose Dex
Time 1 7.8 ug/dL
Time 2 1.6 ug/dL
Time 3 1.0 ug/dL

He is scheduled for the ATCH test on the 14 day mark post Vetoryl start

[MiamiThom]

And, moments ago I found that he had peed on the bed. He hasn't done that in many years. Incidentally, he hasn't peed in the house in forever ... and perhaps it is coincidental that all these things are showing up list Vetoryl start?

[MiamiThom]

So today Ebon is a bit more alert, and the panting is starting to subside a bit. Stools are still loose and he lingers trying to push out more, but only liquid comes out. Last evening and today a couple drops of water with blood came out. Wondering if this is really just due to his straining. Wondering if there is anything to bulk up his poop a bit. :confused:

[molly muffin]

This is day 10? He shouldn't be having diarrhea. That can be a sign of cortisol going too low. Can I suggest you move the ACTH test up? How is he with the eating drinking and peeing?

[MiamiThom]

Sharlene:

Thanks so much! I will call the vet tomorrow and see what they can do. He is easting fine and has been drinking quite a bit. As for peeing, normal, but he did have an accident this past weekend (First in a long time). He was pooping in the bathroom during the nights for about 4 days (up until yesterday) and last night was uneventful. It's like his first bowel movement of the day is a bit more "organized" shall we say .. then followed by more loose.

Also, I posted the test results you guys asked me to post prior to this posting on this same thread.

[molly muffin]

What did the vet say today?

Well, the longer the poop is in the colon, the more "organized" it will be. The less time there, the loser it will be.

I wonder if he is having a touch of colitis. If so a bit of metronidazole might help out and it might not be related to the cortisol treatment.

Mention this to the vet too. Also I'd add in a probiotic for a bit, sprinkled on top of his food. I use florifora, but there are others.

[MiamiThom]

Up Down Up Down Up Down Up

That feels like the song I should be singing ... :)

Ebon went in this morning for his ACTH Stimulation test so we will be looking forward to the results early next week.

Ebon's stool is a little loose, but not the diarrhea he was experiencing last week. The hubby said this morning's poop was solid (yay)!!!

His energy seems to be getting better and he is playing a bit with his sister and with toys. When he was a puppy I would put my hand under the sheet of the bed and play with him and he would attack and play with my hand. Guess what? Out of nowhere yesterday he began doing it again (I wasn't intentionally trying to play). So, we have started those games again.

Water intake has decreased a bit, he is still panting a bit, and we are seeing some slight signs on regrowth of hair (and skin improvement) in some of the areas where there is no hair.

He hates going to the vet and shakes every time we leave the house to go (he knows when he is going because his sister isn't with us). So, I expect him to be a little impacted by the 4 hours he will spend over there today.

Thanks for everyone's support. I look forward to coming here for your support and reading others journeys.

[molly muffin]

Glad to hear his poops are a bit more solid. Even a bit helps.

[MiamiThom]

Hi everyone. I wanted to start a new thread because my initial one said "introduction", and well we are past that stage now.

Ebon had his first ACTH test now that he had been on Vetoryl for 14 days. Let me see if I can get this right from what the doctor told me. The actual results will post to the online record in a couple of days. He is on 30mg once a day.

First blood draw was 15.5 (Range 1-5)
Second draw was 7.9 (Range 8-17)

The vet stated that they want to keep him on 30mg in the a.m., but in the p.m. they want to give him 10mg for two weeks and then up it to 20mg in the p.m. starting week 3.

They want me to call them after week 2 and give them a status of how he is doing and if doing well, move him to the 20mg in the p.m.

They will do another ACTH test on week 4.

Does this make sense?

Ebon also has hypothyroidism and we have been working on that for about 4 months too. Well, it is now stable and the levels are right where the doctor wants them. So, we are so happy about getting this one thing in check and can now focus solely on the Cushing's treatment.

On a good note, he continues to have renewed energy for an almost 11 year old man. He chases birds in the dog park, is very alert, plays with his sister even more than he ever has, and last night was wrestling with the ball and running around the living room. It makes us smile so much to see him this way. It's been over 5 years since we have seen this much energy.

And, I am so glad I found you all. It makes me feel like I am not going through this alone, because none of my friends understand this thing ...

Thanks so much for your ongoing support!

Thom (and Ebon)

[Harley PoMMom]

I've merged your new post into your original thread about Ebon. This way, we will be able to keep track of his entire health and treatment history all in one place. I also, took the liberty and changed your thread title to the one you mentioned, and I'd be happy to change it to anything that you would rather have. :)

According to Dechra, the makers of Vetoryl, the therapeutic ranges for a dog on treatment with Vetoryl are 1.5 ug/dl - 5.5 ug/dl and that post number can go as high as 9.1 ug/dl if clinical symptoms are controlled. So, how are Ebon's symptoms? Adjustments upward can not be solely based on those ACTH stim numbers, how the dog is feeling/acting has to be taken in consideration too. Another thing that I don't agree with is increasing the dose without an ACTH stimulation test being done. Symptom control along with the results of an ACTH test, both of these are needed to effectively and safely adjust the dose. We have seen dogs on the forum act perfectly fine but their ACTH stimulation results showed that their cortisol had dropped too low. If Ebon's symptoms are controlled then I would recommend that his dosage stay the same at 30 mg once a day. I am glad that he is doing well, that is really a good note ;)

Hugs, Lori

[labblab]

Ebon had his first ACTH test now that he had been on Vetoryl for 14 days. Let me see if I can get this right from what the doctor told me. The actual results will post to the online record in a couple of days. He is on 30mg once a day.

First blood draw was 15.5 (Range 1-5)
Second draw was 7.9 (Range 8-17)

The vet stated that they want to keep him on 30mg in the a.m., but in the p.m. they want to give him 10mg for two weeks and then up it to 20mg in the p.m. starting week 3.

They want me to call them after week 2 and give them a status of how he is doing and if doing well, move him to the 20mg in the p.m.

They will do another ACTH test on week 4.
Hi again, Thom. I'm afraid I do not feel good about your vet's plan, either. Unless a dog's "post" ACTH result is too low, or it is higher than 9.1 and little/no behavioral improvement is seen, Dechra's official recommendation is simply to leave the initial dose unchanged until you reach the 30-day mark. At that point, assessment is made re: the advisability of an increase. The reason why you wait is because even while on the same dose, cortisol levels tend to continue to drift downward during the first month of so of treatment. So if you increase the dose prior to that, you are increasing prematurely and risking driving the cortisol level too low.

These recommendations are contained in Dechra's Treatment and Monitoring Flowchart for Vetoryl (hint: print the flowchart out on paper and it will be much easier to read and follow!). As Lori has already noted, a "post" ACTH value up to 9.1 is acceptable as long as symptoms are resolved. After only two weeks, Ebon's "post" value is already lower than that. So actually I am additionally confused as to why your vet is wanting to increase the dose so early in the treatment process.

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

One peculiarity to Ebon's results are the fact that his "pre" value (15.5) was so much higher than his "post" value (7.9). Typically, the second, stimulated value should be higher than the initial baseline value. Previously, we had been told that a result such as this one was probably the result of an error: either the samples were mistakenly reversed or the stimulating agent was ineffective. However, just this week, we have been told by a Cushing's expert that results such as this -- higher "pre" than "post" -- are not necessarily a mistake and perhaps occur more common than previously thought. At any rate, it will be interesting to make sure that the written results do correspond to the results that have been verbally reported to you.

Bottom line: I would print out Dechra's published monitoring recommendations and then talk to your vet and discuss holding up on the dosing increase for the time being. Given these test results and the improvement in Ebon's behavior, I would not want to consider any dosing increase at all until at least one month has passed and the second monitoring ACTH test has been performed at that time.

Marianne

[MiamiThom]

Thanks for your response Lori. I spoke in the previous post about his energy and playfulness. His hair/skin are starting to improve slightly, but his panting, water intake and appetite have not decreased. They seem to be worse as we get past dinner time and into the night.

Perhaps the 10mg increase in the evening will be all he needs? I agree that I may not be totally comfortable with going to 20 mg in the pm on week 2 without an ACTH test to see how he is doing after the initial increase.

I thought I remember reading that ACTH should be performed after any increase (around 10-14 days out). :cool: I can feel my pocket getting lighter!

Thanks again! I am going to repost the figures of all the blood work when they post it, just in case.

[MiamiThom]

Maryanne, Thank you (and Lori) for your responses. It makes sense what you're saying. I will print out the information and discuss with the vet before we increase the dosage.

[molly muffin]

Instead of going with 30mg morning and 10 or 20mg evening, since he does still have some symptoms, then I think a small increase could be made, but why not go with a split dose? if you split you'd be doing 15mg am and 15mg pm? If you increased you could do 20mg/15mg or something small?

That is very strange about the much higher pre than post. No chance they got the pre and post blood draw mixed up?

[MiamiThom]

By the way everyone, she gave me the results reversed. The levels should have been reported as:

FIRST draw was 7.9 (Range 1-5)
SECOND blood draw was 15.5 (Range 8-17)

His baseline cortisol sample from 5/3 prior to the high dex test was 7.8 (if that matters)

Also, here are some of the other results that came back from the other panel(s) run on 5/29/2015 (I have only included those not in normal range):

LAB TEST RESULT LAB RANGE EVAL

Sodium 164.000 mmol/L 144.000 - 160.000 mmol/L ABOVE Normal

Platelet Count 563.000 10^3/μl 200.000 - 500.000 10^3/μl ABOVE Normal

Eosinophil, % 0.000% 2.000 - 10.000% BELOW Normal

Lymphocyte% 10.600% 12.000 - 30.000% BELOW Normal

Segs, Neutrophil 83.500% 50.000 - 77.000% ABOVE Normal

Alkaline Phosphatase 260.000 u/l 23.000-212.--- u/l ABOVE Normal

[MiamiThom]

Good evening everyone. It has been a while since I have posted. Mostly due to the fact we have been busy with the business and also that Ebon has (had) been doing significantly better.

He is currently on 30 mg Vetoryl in the morning and 20 mg in the evening. He is tolerating well and we have been seeing significant progress. We went in for the ACTH Stim test, blood panel and thyroid test on Friday. We started noticing at the beginning of last week that his jar trembling, panting and some skin crusting began coming back. Additionally, he got an ear infection (quite quickly) and has bene whining a bit more when we're not close to him or around him.

ACTH
Test 1 = 7.9
Test 2 = 8.6

In the research for twice daily dosing it mentions the goal should be a post test level of < 5.5. We are not there, and the panting and skin crusting with hair loss is beginning to come back.


He was on Soloxine for HYPOthryoidism and now, as of this test, he now has HYPERthyroidism

Range: .8 - 3.5
Test = 5.6

He is on .6 soloxine twice a day.

I am curious, would control on the Cushing's aspect impact the thyroid in that we would have to adjust his meds down on thyroid?

I am seeing some regression in his skin/hair and panting, and want to make sure this regression is most likely due to the thyroid issue and not Cushings. I also know that the info from Dechra states, " if results are >5.4 to 9.1 - EITHER: Continue on current dose if clinical signs are well controlled OR: Increase dose if clinical signs of hyperadrenocorticism are still evident

Thanks for your insights and I will post the full blood panel at the start of next week. I hope everyone is doing well and that you have a wonderful week ahead.

Thom

[labblab]

I am curious, would control on the Cushing's aspect impact the thyroid in that we would have to adjust his meds down on thyroid?

Hi Thom! Welcome back, and it's good to get this update. Yes, it's my understanding that control of the Cushing's can indeed affect thyroid levels. This is why some vets do not choose to start their Cushing's patients on thyroid supplementation until the cortisol level has become well-controlled -- they want to see whether the thyroid levels will also fall back into normal range, as well, so as to make supplementation unnecessary.

Some dogs do suffer from both primary hypothyroidism as well as Cushing's, and for them, thyroid supplementation is necessary independent of the Cushing's treatment. But for other dogs (and Ebon may be one), thyroid levels end up normalizing along with the Cushing's and supplementation is not needed.

So I agree with your plan at this point: see whether a reduction in the Soloxine results in resolution of the panting, etc..

Marianne

[MiamiThom]

Thanks Marianne. I have reached out to discuss reducing the thyroid meds.

I also received all of Ebon's labs and below are the abnormal ones. I have uploaded them to my photo album, as there were many abnormal results .. too many to copy and past to make look legible. :(

Here is the link to the Lab Results album. http://www.k9cushings.com/forum/album.php?albumid=1028

[molly muffin]

I am curious about the lab results saying 0.000 for the electrolytes like sodium potassium. Etc. Did they just not test those but still say a below normal?

The post can be up to 9.0ug on the ACTH if symptoms are controlled. I agree with Marianne about the thyroid. Once the medication is decreased you might see some of those symptoms resolve and the thyroid numbers be better overall now that you have better control of the Cushing's. Ebon does seem to be doing well on this split dosage.

[MiamiThom]

Sharlene:

I too am concerned, especially since so many of them showed as "below normal." I contacted the vet today and they stated, "We are surprised that these were not entered as well. But, you have the ones you need in the T4 and Cortisol levels. But, if you want to have the electrolytes re-run you can bring your pet back by and we can run them for you." HUH ????

Once I calm down I will call them back tomorrow. Is there anything out there that has the labs that should be routinely checked from time to time? I want to be able to show her what these are and why they're important. I am searching the Decra site, but having a hard time finding.

Tomorrow Ebon goes to the derm (she is the one who prescribed the thyroid meds) and we can then get him leveled out there again). I think that IF the panting (which has gotten worse) doesn't get controlled with the shift in the thyroid meds - we are going to have to look at whether the Vetoryl needs to be upped a bit. His level is higher than the 5.5 (he is 8.6) and perhaps that is having an impact as well.

I think I may suggest that the doctor also contact Decra and speak to them about what she needs to know.

Thoughts?

[molly muffin]

Contacting Dechra is never a bad idea if you have questions and need directions on treatment.

Well I don't know why they wouldn't just run the electrolytes no charge, since it is they and the lab that messed up with the empty results.

They should have contacted the lab right away and asked them to either print out the results again or run the electrolytes on the blood they had. sheezzzz

I'm hoping that if the thyroid medication can be decreased or maybe even gotten rid of, and the panting might have been due to that. if you do an increase of vetroyl, I'd only do a small one since Ebon doesn't need to come down a lot but maybe a bit more would help.

[labblab]

Hi Thom, here is a quote from Dechra's Technical Brochure on Cushing's that cites the monitoring tests that should be done after treatment with trilostane has been started:


The efficacy of treatment is assessed by
collectively monitoring:
• Clinical improvement
• Blood cortisol with an ACTH stimulation test
• Biochemistry profile (particularly electrolytes,
urea [BUN], and creatinine)

http://www.dechra-us.com/files//dechraUSA/downloads/Client%20Literature/38965_Technical_Brochure.pdf

The concern about the electrolytes especially focuses on the balance of sodium and potassium. This is because, in addition to lowering cortisol, trilostane can also affect another adrenal hormone called aldosterone. Aldosterone is responsible for maintaing proper levels of sodium and potassium in the body, so if those go out of whack, it can present a serious problem that needs to be addressed.

I assume that the focus on the urea (BUN in the U.S.) and creatinine is to make sure that kidney function remains within normal range. Impaired kidney function can affect the manner in which the trilostane is metabolized and excreted from the body.

Hope this info helps!
Marianne

[molly muffin]

Yay!!! Good find Marianne!