New at this...calcinosis cutis

[Suekwilson]

After 5 months of telling our primary vet that "something is wrong", much bloodwork, 3 more vets, many more tests, x-rays, ultrasound, and much $$$ - our 8 yr. old French Bulldog (20 lbs.) was finally diagnosed with Cushings last week with an LDDT. I am concerned that the veterinarian profession doesn't know that much about this horrible disease. Trixie has been clinically symptomatic for several months; but all her tests have come back "close to normal". So, nothing was done, and she just keeps getting worse. Last week, we were told to give her 60 ml Trilostane once a day. After doing my own research, I suggested that 30 ml - twice a day might be better. I was also not told to medicate with food. I worry that I can find better information on google than from the trained medical professional.
She has calcinosis cutis on her stomach, legs, and face.
I am very worried about her; she acts like a very old lady. She was a puppy mill breeder for 5 years and had a very terrible life. We would like her remaining years to be happy, but right now she just sleeps. It is very sad. I am feeding her Honest Kitchen and home cooked chicken or hamburg. (High protein, low fat) Any suggestions? We can't stand to see her like this... thanks :(

[labblab]

Hello and welcome to you and your little girl! I have only a moment to post right now, but I want to quickly warn you that a total of 60 mg. daily is three times the initial starting dose that is currently recommended by Dechra (manufacturer of brandname Vetoryl), as well as the vast majority of specialists now working with Cushing's dogs. In the early years of trilostane treatment, the dosing levels were higher and these higher dosing levels are still reflected in published charts and product inserts. However, subsequent years of experience with the drug have established that higher initial doses are associated with more frequent and serious side effects. As you will see, Dechra's most recent recommendation (released just six months ago) recommends that dosing is started at a formula no higher than 1 mg. per pound (or 2 mg. per kg.).

http://www.vetsonline.com/news/product-news/140722-new-lower-starting-dose-for-vetoryl.html

Since your girl weighs only 20 pounds, even one 30 mg. capsule daily exceeds this recommended formula. But at least it would be a far safer choice than doubling that dose. Since Vetoryl comes in 10 mg. capsules, it would actually be possible for you to exactly match the 1 mg. per pound recommendation at the outset, and reserve the 30 mg. capsules that you have on hand for a future time in the event that subsequent monitoring testing indicates that a dosing increase is appropriate.

I know other folks will soon be by to welcome you and ask you for other specifics re: your girl's situation. But as I say, I did not want to waste any time in giving you this warning about the risk of overdosing! Calcinosis cutis is definitely a brutal symptom of the disease, and I know you are anxious to gain rapid control of it. But the safer route truly is to begin at a lower dosage level and work upwards if appropriate, rather than to start with a dose that is too high and risk an early crash on the medication.

Marianne

[Dixie'sMom]

Hi and welcome! I'm so sorry your baby is feeling so poorly. Hopefully we can help to get her to feeling better soon.

I think you will find that all of us agree with Marianne on the "start low" dosing for Vetoryl. These are very strong medicines and too much can harm your baby. You are correct in stating that many of the vets are not very knowledgeable about Cushings, so you as a Cushpup parent will need to educate yourself in order to protect your pup and make sure she gets the best care possible. So please.... please do not start your pup at 60 mg per day. Start with 20 mg which is 1mg per pound of body weight. After 14 days have an ACTH stim test done to check her levels. Know that the levels can continue to drop for 30 days. At the 30-40 day mark have another ACTH stim test and if an increase is indicated at that time, then increase the dosage in small increments. Continue this regimen until you get to the proper dose for your pup and her cortisol is properly controlled.

Others on the forum have experience with CCutis so they will be along to help you with that. I do know from reading other posts that the cortisol needs to be in the lower ranges to gain good control of the hair and skin issues, but you NEVER want to start with such a large dose. It is just to dangerous.

Also, the experts here will want to see your pups testing and lab results so if you do not have copies of those, please request them from your vet. They will want to see any abnormalities of blood, urine and tests specific to Cushing's (LDDS, ACTH stim, ultrasound) with their reference ranges. If you do not have copies of these tests, please request them from your vet.

Did the vet tell you whether he thought she had pituitary or adrenal Cushings?

Kudos to you for seeking out information on your own before starting the medicines. I am so glad you found us. Again, welcome and I look forward to getting to know you and your baby girl.

What is her name?

[Suekwilson]

Her name is Trixie. Since she was a puppy mill breeder for 5 years, we thought that name sounded like a hooker. LOL She's a little cutie!
Thanks for your help. It is really sad that the medical profession is not UTD on this disease.

[ShibaMom]

Welcome to you and Trixie!
I'm new here as well. So sorry your baby is suffering so much, and how wonderful that you saved her from that awful life.
LOL about the hooker comment!

To give you some other comparison for dosing - my Zanya, who is 18.3lbs, was just started on 10mg trilostane per day.
These drugs are really potent, and we want to be careful not to have them swing the other way - of TOO low cortisol.

Hope to hear good things for Trixie soon!
Samantha

[Harley PoMMom]

Hi and welcome to you and Trixie!

I've taken the liberty of adding calcinosis cutis to your thread title so that it will be more likely to catch the eye of our other members that are going through this with their own dog.

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


Last week, we were told to give her 60 ml Trilostane once a day. After doing my own research, I suggested that 30 ml - twice a day might be better. I was also not told to medicate with food.

Is Trixie's Trilostane in capsule form or a liquid suspension? If the Trilostane is in a liquid form could you tell us what the mg per ml it is?

I agree with the others in that the starting dose being recommended is too high. As was mentioned before if you could get copies of all the tests that were done on Trixie and post the abnormal values that are listed that would be a great help to us in providing you with more meaningful feedback. We are especially interested in the results of the diagnostic tests that were performed in diagnosing the Cushing's.

Could you tell us what symptoms Trixie is displaying that led you to ask the vet to test for Cushing's? Is Trixie taking any other herb/supplements/medications? Does she have any other health issues?

Also, Trilostane is a fat-soluble drug and has to be given with food to be properly absorbed. Dechra, the makers of brand name Vetoryl (which Trilostane is the active ingredient), state in their product insert that the Vetoryl should be administered with food.

Here is a link to their product insert where you will find this information and more:http://www.dechra-us.com/files/dechraUSA/downloads/Product%20inserts/Vetoryl.pdf


I worry that I can find better information on google than from the trained medical professional.

Unfortunately many vets are clueless when it comes to canine Cushing's and the treatment protocols. I will provide you with a handy link to our Resource thread that has a wealth of information regarding canine Cushing's: Helpful Resources for Owners of Cushing's Dogs (http://www.k9cushings.com/forum/forumdisplay.php?f=10)



She has calcinosis cutis on her stomach, legs, and face.

Was the calcinosis cutis diagnosed with a biopsy or skin scraping?

We do have members that are dealing with calcinosis cutis and I am sure they will be along soon to share their knowledge and experience in treating the calcinosis cutis.

I just want you to be aware that it can be very difficult to get the calcinosis cutis under control and it's tough to watch the discomfort your pup is experiencing.

Please know that we are here for you and Trixie, and please do ask all the questions you want.

Hugs, Lori

[labblab]

Last week, we were told to give her 60 ml Trilostane once a day. After doing my own research, I suggested that 30 ml - twice a day might be better. I was also not told to medicate with food.

Oh Lori, I am so glad you caught this -- that the dosing info is in units of ml rather than mg! I was reading so hurriedly that I did not notice this difference. So yes, if the trilostane is in a liquid suspension, it is possible that the amount being given is OK. We do need to know how many mg of medication is in each dose, however, to know for certain. So please do tell us more about that.

Marianne

[Suekwilson]

Thank you all for responding. It's so nice to know "I am not alone"...
Trixie's Trilostane is 30 mg caps - 2 times a day.
Her LDDS numbers are 3.3, 5.7, 3.8
She has all clinical symptoms: increased drinking, urinating; increased appetite (although that is hard to tell with a bulldog!); pot belly; lethargy; red, raised bumps the size of quarters, dark areas on her belly; and last came the hair loss on legs and face.
She is on no other medication. Her CBC/Superchem came back with nothing remarkable. A T-4 test did not suspect hypothroidism. An ultra sound showed one enlarged adrenal (9.1 mm), all else within normal range.
I tried, this morning, to get an appointment with an internal medicine vet - first opening is in a week. Took latest info on trilostane dosage to regular vet this morning, waiting for his call. It is so uncomfortable to realize the doctor that we trust, is giving bad advice. She has been on 30 mg, twice a day since last Wednesday. I have dropped her to one 30 mg/day, beginning yesterday.
She is just sleeping all the time, getting up to eat and pee. That is no "quality of life". It is all so distressing....

[Harley PoMMom]

Trixie's Trilostane is 30 mg caps - 2 times a day.
Her LDDS numbers are 3.3, 5.7, 3.8
She has all clinical symptoms: increased drinking, urinating; increased appetite (although that is hard to tell with a bulldog!); pot belly; lethargy; red, raised bumps the size of quarters, dark areas on her belly; and last came the hair loss on legs and face.

For Trixie's weight of 20lbs that 30mg BID is a hefty starting dose. The lethargy you are seeing could be that her cortisol has dropped too low or that she is going through cortisol withdrawal syndrome, either way I am relieved to see that you have decreased her dose to 30 mg once a day.

Other symptoms associated to a dog's cortisol dropping too low are: vomiting, diarrhea, inappetence, or she just is not acting her normal self. If any one of those signs are seen than the Trilostane should be stopped and an ACTH stimulation test may be needed.



An ultra sound showed one enlarged adrenal (9.1 mm), all else within normal range.
I have dropped her to one 30 mg/day, beginning yesterday.
She is just sleeping all the time, getting up to eat and pee. That is no "quality of life". It is all so distressing....

With those LDDS results along with one adrenal gland being enlarged, this points to the adrenal form of Cushing's. When a dog does have the adrenal type of Cushing's, the cure is an adrenalectomy. However, this is a very serious surgery so this requires a skilled and experienced board certified surgeon.

You are not alone, we are here and will walk along side you on this Cushing's journey.

Hugs, Lori

[Renee]

Hello and welcome. I am one of the pet parents actively managing the dreaded CC.

The legs, stomach, and face are not common places for CC to occur. How was the CC diagnosed? Some vets are comfortable diagnosing CC by sight (although I do believe that to be questionable). The best and surest way is to have a punch biopsy done or see an IMS / derm vet that has experience and knowledge of CC.

There are many options for helping to relieve the discomfort of CC, but no cure other than getting the cortisol into the proper range and keeping it there for an extended amount of time.

I do hope you'll be able to see an IMS, and especially discuss pursuing an adrenalectomy, should it be confirmed that ADH is what Trixie has.

[Suekwilson]

Could someone please tell me the correct procedure for applying DMSO for CC - how much, how often, etc. thank you.

[Harley PoMMom]

I have taken the liberty and merged your post regarding DMSO intoTrixie's original thread. We normally like to keep all posts about each pup in a single thread as it makes it easier for members to refer back to the pup's history when needed. Thanks!

If you do a search on the forum there are many post that come up for DMSO.

I did find this article:
Marked relief from the pruritus was obtained only after topical dimethyl sulfoxide (DMSO) and betamethasone were applied to the affected areas' margins in the evening after the second hydrotherapy. The DMSO and betamethasone were applied once a day for three weeks and then every other day for three weeks. An Elizabethan collar was not used because the owner did not permit it. The dog's pruritus decreased markedly over the next six weeks, and a marked decrease in the calcinosis cutis was noted. Complete resolution of the calcinosis cutis took six months, and after the initial six weeks of DMSO and betamethasone therapy, the owner used the mixture intermittently when lesions became pruritic.

http://veterinarymedicine.dvm360.com/dermatology-challege-severe-facial-pruritus-boston-terrier

Hope this helps :o

Hugs, Lori