Daisy was just diagnosed with Cushings

[TPott]

Hello. My 8.5 year old Golden Retriever was just diagnosed with Cushings. My wife and I are obviously worried and have a bunch of questions. Just to give you a brief summary of her symptoms and test results:

Daisy drinks excessive amounts of water and needs to urinate more often than normal. She also pants a lot and is lethargic. She is hesitant to go for walks some nights. We also noticed that the whites of her eyes are bloodshot all the time. From what I understand, this could be caused by high blood pressure caused by Cushings? Her coat is starting to thin out, especially on her back. There is no sign of a pot belly yet or weight gain.

As for testing, I don't have exact numbers, but I can give you an idea of what was done. She first had bloodwork done and they noticed that her thyroid was low at 13.5. She was put on thyroid meds for five months and we noticed the above symptoms start to really kick in. We thought that it was just the thyroid meds, but when she was taken off for 5 weeks, the symptoms were still present. The vet then ordered a urine test which was sent away to be checked out. The vet said that her levels were in the mid 80's and she was leaning toward Cushings. They just did the 8hr low dose dex tests and told me that the results were conclusive that it was Cushings. They have recommended that we put her on Vetoryl (Trilostane). It sounds like with her being a 68lb dog, the cost will be $160 - $190 a month(Canadian). We are so torn as it is going to hurt us quite bad financially. She's our baby though and we want to do what's best for her.

So our questions for any of you who may be able to answer are as follows:

1. Are most of the cases of Cushings caused from tumours? If so, what are the odds that the tumour is benign vs cancerous and how will we know?

2. If we ever needed to stop the Vetoryl, can this be done without harming Daisy?

3. How long does the drug take to start to work?

4. What are the main side effects?

5. Does she take one pill a day or twice a day?

6. If Daisy were to live another 3, 4 or 5 years, we are looking at $10,000+ in meds alone, without any more vet visits, tests etc. Is there anything out there where we can get some sort of financial support or reimbursement? Almost like a co-pay card for humans.. where a company steps in and pays for a portion of the drugs.

We are really concerned with everything and hope that Daisy can still lead a "normal" life once she is on the meds. Any answers you can give us would be very much appreciated!

Sorry for such a long post. :(

[labblab]

Hello and welcome to you, your wife, and Daisy! We surely understand how worried you are feeling right now, but we hope that we can help arm you with information that will make things easier and also ease your minds a bit. We have witnessed many success stories here throughout the years, and there is no reason why Daisy shouldn't also be one. :)

I am going to address your questions one-by-one:


1. Are most of the cases of Cushings caused from tumours? If so, what are the odds that the tumour is benign vs cancerous and how will we know?

All cases of Cushing's are caused by tumors. By far the most common are benign, microscopic tumors in the pituitary gland in the head. The remainder are tumors of the adrenal glands, and they may be either benign or cancerous. Daisy's LDDS results may point to a pituitary tumor. If those results are inconclusive as to tumor type, there are further diagnostics that can be performed.


2. If we ever needed to stop the Vetoryl, can this be done without harming Daisy?

If you end up stopping the Vetoryl, the only result will be a return of the Cushing's symptoms and any damage that the chronic cortisol elevation is causing.


3. How long does the drug take to start to work?

Once the drug reaches a therapeutic level in the bloodstream, improvement in obvious symptoms such as thirst, urination, and hunger can be swift -- a matter of days. Other symptoms such as hair loss and muscle weakness can take several weeks to a couple of months. The key, though, is a therapeutic drug level, and this can take some time and dosage tweaking.


4. What are the main side effects?

Here's a link to a publication that will give you tons of helpful info, including possible side effects:

http://www.dechra-us.com/Files/dechraUSA/downloads/Client%20Literature/Treatment%20and%20Monitoring%20of%20Hyperadrenocor ticism.pdf


5. Does she take one pill a day or twice a day?

Clinicians seem to be split in their preference in this regard. However, Vetoryl's maker (Dechra) still recommends starting first with once daily dosing and only switching if symptoms are not suitably controlled throughout a 24-hour time period. This would also likely be the cheaper route, so that's the way in which you may ask to begin treatment.


6. If Daisy were to live another 3, 4 or 5 years, we are looking at $10,000+ in meds alone, without any more vet visits, tests etc. Is there anything out there where we can get some sort of financial support or reimbursement? Almost like a co-pay card for humans.. where a company steps in and pays for a portion of the drugs.

I do not know whether Canadian vets have a similar system to the "Care Credit" program here in the U.S. But this is a program here that allows you to pay your vet bills over time without incurring interest. You might inquire. Unfortunately, I am unaware of any drug cost-sharing programs that apply to Vetoryl anywhere, and we know the drug is especially expensive in Canada. One option you might discuss with your vet is having the drug custom-prepared for Daisy by a compounding pharmacy. This is actually less expensive than Vetoryl. One of our Moderators, Sharlene, lives in Canada, and this is what she recently wrote to another member.


Hi, I'm the Canadian who also has a molly. Welcome to the forum.

I get compounded trilostane from ThePetPharmacy.ca at a cheaper price. There are actually several compound pharmacies that the vets use, but this one I've found to be a better price and they will mail to my door. You can send them an email and inquire about the price and they will respond. They can't do 60mg, as that is a patented amount by the makers of vetroyl, but they can do 59 or 61mg. Keep in mind too that some dogs respond better to vetroy than to trilostane (trilostane is the main ingredient in vetroyl). Your vet has to call in the prescription.

I know this is a very long answer, so I'll stop for now. But we're really glad you've found us, and we look forward to seeing Daisy's actual LDDS test result. As I say, that may shed light on the type of tumor that is causing her Cushing's.

Marianne

[molly muffin]

Welcome to the forum.

I am the one in Canada who uses thepetpharmacy.ca You can email them at customer.service@thepetpharmacy.ca to find out what they would charge for 59mg or 61mg of trilostane compounded and also ask about 29mg or 31mg for 60 pills per month. The price should be better than what you would currently be paying.

As far as financial help in Canada there is in Ontario
Farley Foundation - http://farleyfoundation.org/

In Alberta - http://tailsofhelp.ca/vets/

There is one coming in British Columbia or maybe already going
http://balfoursfriendsfoundation.webs.com/

This a good site that gives a round up of the various options it says credit cards but that isn't what the pet financing portion is about:

http://canada.creditcards.com/credit-card-news/pet-financing-options-1264.php



Something like care credit here is the Pet Card https://www.petcard.ca/

[TPott]

Hi Guys,

Thanks for the info so far. I was able to get the results from Daisy's Low Dose Dex Test and I have attached a link here: http://s20.postimg.org/slzcdb8ql/Daisy_LDD_Test_Results.jpg. I hope this helps.

I just came from the vet and now have the Vetoryl capsules in hand. Daisy is 68lbs and they gave me 120mg capsules to be taken once per day. I have some questions before I start her on the meds, as I am very nervous and concerned about Vetoryl.

1. What are the main side effects to watch for and could they start right away?

2. We have heard that this pill can be quite serious and cause death. I would never forgive myself for giving her the pill, especially if there was something more safe that I could have tried.

3. My vet and other websites have mentioned that most dogs only live two years or less after being diagnosed with Cushings. Is this true and if so, is this due to the Vetoryl or the Cushings? Daisy is only 8.5 years old and I was hoping with any luck at all that she could still live a "healthy" and long life. :(

4. With Christmas right around the corner and a lot of gatherings to go to, how safe is it going to be to leave her alone for hours at a time. How critical is it to be there to monitor her every hour on the hour?

I did get some prednisone tablets to keep on hand, but not sure how to know when I would ever give them to her should her levels drop too low?

Looking forward to hearing from some members to help explain and ease our minds.

[labblab]

Hello again, and thanks for linking to those LDDS results. From what I am seeing, they are consistent with Cushing's, but they do not distinguish between a pituitary or an adrenal tumor. When dogs show suppression of cortisol to a specific level or less than 50% of the baseline at either the 4 or 8-hour marks, there is a high degree of confidence that a pituitary tumor is the cause. When this degree of suppression does not take place, as was true for Daisy, either a pituitary or adrenal tumor may be to blame. If you want to know more about the type of tumor, either an abdominal ultrasound or other diagnostic bloodwork would need to be performed. Trilostane is prescribed for Cushing's of either type. But some folks want to know more specifically what type of tumor is involved, especially if they wish to consider surgery to remove an adrenal tumor. This can offer a complete cure, but it is an expensive and risky undertaking.

Turning to dosing, I am disappointed that your vets have sent you home with 120 mg. capsules. When Vetoryl was first introduced, dosing regimens were higher. But within the past 1-2 years, research and clinical experience have both combined to lead most specialists and also Dechra, the manufacturer of Vetoryl, to recommend an initial dosing formula that does not exceed 1 mg. per pound. Vetoryl comes in 60 mg. capsules, so that would be the preferable dose to start Daisy on, especially in order to avoid unwanted side effects that can result from lowering cortisol levels too quickly. Here is a link to a reply on our Trilostane resource thread that discusses this recommendation.

http://www.k9cushings.com/forum/showthread.php?p=1251#post1251

Also, see Dechra's treatment and monitoring Flowchart here:

http://www.dechra-us.com/Files/dechraUSA/downloads/Client%20Literature/Treatment%20and%20Monitoring%20of%20Hyperadrenocor ticism.pdf

If it were me, I would not feel comfortable starting Daisy at the 120 mg. dose, especially during a holiday period when vets are harder to contact if things go wrong. I would ask your vets to exchange the capsules for the lower dose and first begin there. The dose can always be increased if subsequent monitoring shows insufficient improvement. But this is far preferable to generating unwanted side effects from overdosing such as vomiting, diarrhea, and extreme lethargy.

Marianne

[TPott]

Thanks Marianne!

I'm hoping that the vet will return the 120mg capsules and swap them out for 60mg. I know the vet did pop one of the capsules open from the foil pack to check and see if it was a tablet or capsule as he wasn't the one who had ordered them in. It will probably take a few days to order in 60's and with the upcoming holidays, we probably won't be able to get Daisy started on the pills until early next week. It is probably safer vs trying to rush into things and give her too high of a dose.

I'm still trying to figure out the best way to explain to them as to why I want to drop to the 60mg. I know that they don't deal with many Cushings cases and have only a select few dogs on the drug. Maybe they are still going by the old recommendations and I can try to explain to them that they have changed their recommendations but just haven't updated the paperwork?

Btw, I can't seem to get the one link to work that takes you directly to the manufactures page. Are you able to check it for me to make sure that it is working on your end?

Thanks so much!

Trevor

[labblab]

Hi again, Trevor. I'm not sure why that link is not working for you. I just double-checked and it does work for me. But I'll try to find an alternative "route" for you.

In the meantime, if you print out this page to show your vet, I think it should be self-explanatory. They can even contact Dechra directly in order to confirm this revised dosing recommendation. Just keep in mind that the 2.2 mg./kg. referenced in the article translates to 1 mg./lb.

http://www.vettimes.co.uk/news/new-lower-starting-dose-for-vetoryl/

And yes, I'm guessing your vets were relying on the older, often published dosing range of 1-3 mg. per pound (which still appears on the Product Insert). They probably figured that 120 mg. was good since it fell right in the middle of the range.

[labblab]

To get to Dechra's brochures re: Vetoryl, try just going here to our Trilostane resource thread. The flowchart I am talking about appears in the top link there: "Diagnosis, Treatment and Monitoring of Hyperadrenocorticism."

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

[TPott]

Hi Marianne.

I contacted my vet this morning and tried to explain to her about Dechra revising their dosing recommendations and that their current literature in the capsule box is still showing the outdated recommendations. She seemed to be a little short with me and said that she would have to make some phone calls and look into it further. With it being so close to Christmas, she figures that it won't be until next week before she is able to confirm anything. Now Daisy has to wait another week without meds and she seems to be getting more lethargic by the day. :(

She also told me that even though the package hasn't been opened, they will not take it back. I am not happy as I am now out a bunch more money, on top of all of the testing costs to this point.
I did write Dechra last night after we spoke here and asked them to confirm the recommended dose for Daisy. I was hoping to hear back from them so that I could forward the written info onto the vet, but I may not hear back from Dechra until next week now.

Trevor

[Harley PoMMom]

Hi Trevor,

Gosh I am sorry that you are having this difficulty getting a proper starting dose for Daisy and I am glad to see that you are not starting with the 120 mg Vetoryl capsules.

Unfortunately here in the states it is against the law to offer, buy, sell, or exchange any prescription or over the counter medications to other members so I'm afraid I had to edit your post that applied to that. :(

I'm not sure if a compounding pharmacy could use those Vetoryl capsules to make the strengths you need, hopefully someone here knows that answer.

Hugs, Lori

[labblab]

Hi Trevor, I'm sorry, too, that Daisy's treatment is temporarily at a standstill. Also, I'm really hoping that once your vet has had the chance to confirm the info we've been sharing with you, she'll be more receptive to working with you re: Vetoryl pricing. Right now, she is probably questioning the whole situation, but that may change once she has an opportunity to consult with others (and hopefully, Dechra themselves).

In the meantime, I'm glad Lori has explained our forum policy to you re: medication sales among members. And yes, it is possible that you may be able to find a local compounding pharmacy that will "repackage" the Vetoryl capsules for you. But if your vet won't take them back, one option may just be to hold on to them for the time being. It is possible that Daisy may indeed end up needing the higher dosage further down the road. After the first month on the 60 mg. capsules, you'll have a much better idea as to her genuine dosing needs based upon both symptom resolution and also monitoring blood testing. At that point, you can better assess the likelihood of her ever using the 120 mg. dose.

In closing, I do want to stress again that I am not a vet myself. So all I can offer you is my personal opinion as to what I would do if Daisy were my dog. If you and your vet jointly decide that you want to go ahead and start her on the 120 mg. dose right from the get-go rather than making her wait to start treatment, that is certainly up to you. But I know you are very worried about possible ill effects from the medication, especially during the holidays. So that is why I am advocating for a lower dose and a more conservative start to her treatment.

Marianne

[TPott]

Hi Lori and Marianne,

Thanks for clearing things up about the policy. I do apologize.

I'll let you know what ends up happening with my vet and Daisy's starting dose once I know more.

Thanks again for all your suggestions and help.

One last question that I wanted to ask was in regards to life expectancy with Cushings dogs. I have read online and heard directly from my vet that most dogs only live an average of two years after being diagnosed with the disease but I wasn't sure why? Is due to the medication or the disease itself? We just aren't sure what to expect but would like to prepare ourselves as much as possible.

Trevor

[labblab]

Hi again, Trevor. Re: that two-year life expectancy...I think a big part of the equation is the fact that many dogs are already "seniors" at the time they are diagnosed with the disease. As a result, it can be difficult to separate out the natural effects of aging from the consequences of Cushing's. Also, for the minority of Cushpups who suffer from aggressive adrenal tumors or rapidly enlarging pituitary tumors (of which my own dog was one), I do agree that the lifespan will be shortened without invasive intervention, and so that does affect the "averages." As we discussed above, right now I don't believe we yet know whether Daisy has a pituitary or an adrenal tumor since her LDDS test was inconclusive as to tumor type. It would take further diagnostics to sort that out if that is information you want to find out.

However, for younger dogs without aggressive tumors, one of the goals of treatment is to forestall the slow, progressive damage that consistently elevated cortisol levels can cause over time -- things like kidney damage from proteinuria, and all the problems that can result from high blood pressure. For younger dogs who are otherwise in good health, our experience here is that they can live far beyond that published two-year time period. That is one of the bittersweet aspects of our special memorial forum -- many dogs are with us for years, and therefore we jointly mourn as a family when they finally do pass away at the end of their natural lives. Whether in good or ill health, none of our furkids live anywhere near long enough. :o

But hopefully to put your mind at ease, you can regard that two-year prognosis as being an average viewed over a number of different situations. Daisy's situation may well be one that grants her full lifespan once her cortisol level is stabilized.

Marianne

[TPott]

Hi Marianne,

Thank you so much for taking the time to explain things. I'm really glad that I found this forum. .

You mentioned about high blood pressure. I noticed back about 6 or 7 months ago now (when most of the symptoms started) that the whites of Daisy's eyes were always red. I questioned it many times and the vet always said that it was because she was excited and worked up about being at the vet. I would explain that even when she was at ease in the comfort of our home, the red would never go away. They didn't seemed concerned and brushed it off every time that I brought it up.

I'm assuming that this is a sign of the high blood pressure that you were speaking about? Will Vetoryl bring that blood pressure down once it lowers the cortisol in her body?

I also wanted to ask about her thyroid. Daisy was tested back in the spring and her level was 13.5. We thought that this was why she was always lethargic, down, drinking excessively, panting, etc. so they put her on thyroid meds and retested her 5 weeks later. Her levels had come back up, so they kept her on the drug. After a few months and no sign of improvement in the symptoms, I asked to have her taken off the thyroid meds to see if that would eliminate the symptoms. She went off the meds for 5 weeks and still had all of the symptoms. That is how we came to discover that she had Cushings. So my question about her thyroid is can Cushings cause thyroid levels to drop like this? I just wasn't sure if she would have to be put back on thyroid meds once we get her cortisol levels stabilized?

I do apologize for asking so many questions, but I am quite worried and just want to understand what Daisy is going through.

Merry Christmas to you and everyone else in the forum!

[labblab]

Merry Christmas to your family, too, and you never have to apologize for asking questions! That's what we're here for! ;) :D

As for the thyroid, yes, Cushing's is a condition that can affect thyroid readings and it is possible that Daisy's thyroid profile may normalize again once her cortisol level is stabilized. Some dogs with Cushing's may also suffer from genuine low thyroid, however, and require lifelong treatment for both. So time will tell with that, although you might consider requesting a full thyroid blood profile to be performed. This gives you more info than just the basic T4 level that appears on general blood panels, and can sometimes help distinguish whether the abnormal thyroid readings are actually secondary to another condition such as Cushing's. But I know this would mean yet more expense and another blood draw for Daisy. But just something for you to be aware of as a possibility.

As for the blood pressure, again, I am puzzled as to why your vet would not take this concern seriously especially now that Daisy has been diagnosed with Cushing's. I apologize that I seem to be creating some issues between you and your vet, but I believe I would ask point-blank if she will please check her blood pressure for your own peace of mind. If Daisy's pressure is significantly elevated, Vetoryl treatment may not be sufficient and she may need to take some blood pressure medication in just the same way as a human does. We have other dogs here who do take blood pressure meds along with Vetoryl. Red eyes don't always mean hypertension -- my noncushpup Lab often has red eyes, presumably from allergies (which she does have) since we've tested her blood pressure and it is normal. But I don't understand why your vet is blowing off your concern, and I would press her on this. :o

Marianne

[TPott]

When I brought up the issue about her red eyes on our last visit, the vet did finally agree that it could be caused from the Cushings. She said that they had no BP cuff to test her blood pressure and there was no magic way to tell if her blood pressure was up. I thought that this was a little weird but didn't know what else to do. Is there a specific test that I can ask for then to check her BP?

[labblab]

No, it would have to be tested with a cuff. I do know that not all vet practices have cuffs, which surprises me a bit since I would think that would be important info to have available. But it is what it is. So for the time being, I guess that will need to be a back-burner issue unless there is a specialty vet practice in your area where Daisy could be taken to have her pressure checked (but again, requiring more expense and probably also a referral). So for the moment, maybe we'll just stay focused on getting her started successfully on the Vetoryl, and then we can go from there.

[TPott]

That sounds like a good plan. I was reading an article online about the new dosing recommendations and this doctor also mentioned that he preferred giving the dose twice a day vs all at once. Does anyone have any experience with this? I just want to know before my vet orders 60mg capsules in case they need to switch it to 30mg capsules that I give twice daily.

[molly muffin]

My vet also doesn't have a BP cuff, so I take her to either the specialist or to a different vet who does have the cuff.

High blood pressure can cause retinal bleeds which leads to scaring in the eye. If the eyes are red then it is very important to get it checked, preferably by a specialist. My dog, did have the high BP (diagnosed by the specialist, not the vet), had the retinal bleeds and now has some focal point blindness and cataracts. (I assume the cataracts are age related) but it causes her eyes to be red especially when they are irritated and I have drops now for her to keep the irritation down. So I would definitely urge you to have that BP and her eyes checked out by a specialist.

Not sure your vet is really in tune with dogs eye conditions.

[TPott]

Happy New Year Everyone!

Just wanted to give an update on Daisy.

She started the Vetoryl 60mg capsules 5 days ago now. So far, she has not really shown any ill effects from the drug, except she seems a bit lethargic. It's hard to tell with her though as she is always this way. No diarrhea or vomiting yet which is good. We are monitoring her water intake and watching to see if her panting slows. It doesn't seem as though the water intake has slowed down yet, but there are some signs of her not going to the bowl as often.

One thing that I did want to ask about is her weight. From what I understand, most of the Cushings dogs gain some weight and could develop the pot bellied appearance/full face. Daisy seems to be losing some weight. I can really see it in her face and feel it in her spine. Does this sometimes happen with Cushings dogs and will that change once her cortisol levels drop? I keep worrying that the tumour is cancerous and that is why she seems to be losing the weight. I'm praying that this is not the case, but it is definitely weighing on my mind.

Lastly, I have been keeping a close eye on the redness in the whites of her eyes. I'm really hoping that this drug will also help bring down her BP, as we are quite concerned about that. Not sure how long it would take for this to happen?

Thanks,

Trevor

[molly muffin]

If she has high BP, there are BP meds that she can take to help with that but you need to find a vet with a cuff to do the testing. I have a separate vet who does the testing, as does my IMS (where she is generally tested for her BP). Amoldipine is probably what they would use for BP up here in Canada. It is what my dog is taking. There is also a supplement which I have found very helpful, called Ocu-glo It is danged expensive though but we've found it to be worth it as far as maintaining eye health.

I would want a vet who is familiar with cushings, high BP, and other issues that can come along with cushings to be seeing regularly and even get a primary IMS if that is possible, which it should be. I'm in Ontario and we have these available. I do find that I had to do some switching around with vets to get the one with the best care for my dog, who was well versed in cushings.

[TPott]

I wanted to give you all an update on Daisy. She has now been on Vetoryl for 3 months now. Her water intake has dropped from 14 cups a day to around 8 cups. Her panting has really calmed down as well. Her overall behaviour has not changed much. We were hoping that she would get a boost of energy, but nothing so far. Her coat is still quite rough on her back with a lot of scabs and thin fur. She just had another ACTH test done the other day and we are waiting for the results. She is currently on a 60mg capsule in the morning and 30mg in the evening.

We are quite concerned with the amount of muscle mass that she has lost on her back end. She seems to be get more unstable as the days go by. With her being almost 9 years old, will her muscle mass return?

Any input would be much appreciated.

[molly muffin]

Sometimes they regain muscle mass and sometimes they don't. There is no definite one way or the other unfortunately. Do you have a water therapy place near you for dogs? Sometimes water therapy can help with joints and regaining strength.