Roxy the Boston Terrier starting Lysodren today (CC)

[Lauren B]

Hello,
I first became suspicious that my 10 year old girl had Cushing's in December, when she began drinking excessively and having accidents in the house. She also had black head like spots on her belly and a belly so distended that she was snoring even while awake if she sat down. The first vet I took her to said she was just getting old. So, I did some research on natural ways to help a dog with Cushing's and started a low purine, low fat raw diet. Within two weeks, her symptoms improved and she began to lose weight. A large lipoma on her side even disappeared. Fast forward to about 1 1/2 months ago when hardening of the skin started in large patches on her sides and neck. We saw two vets who didn't really know what the condition was. I asked on a dermatology page and the vet said it looked like Calcinosis Cutis. The third vet we went to immediately said CC when he looked at Roxy and began explaining Cushing's and the tests required. He checked her thyroid and did the ACTH with confirmed the diagnosis. I was given a prescription for Lysodren and one for Prednisone. I began the meds today. I am so appreciative for all of the effort people are willing to put into helping dogs they do not even know. Thank you!

[Harley PoMMom]

Hi and welcome to you and Roxy!

Unfortunately right now I don't have much time to welcome you both properly :o so please forgive me as I am going right on with some questions. ;)

Does Roxy have the adrenal or pituitary form of Cushing's? How much does Roxy weigh? What is the Lysodren dose the vet has prescribed? The general protocol for Lysodren is that there is a loading phase and then a maintenance regimen is followed. With the loading phase the Lysodren is given twice a day with some fat and only after the dog has eaten their meal. The main reason to give it after the meal is because any slight pause in eating could mean that the dog is loaded and therefore no more Lysodren should be given. Was the CC diagnosed via a biopsy?

I'm including a link from our Helpful Resource forum to information regarding Lysodren, please do read it and if you have any questions do not hesitate to ask them: Lysodren loading Instructions and related tips (http://www.k9cushings.com/forum/showthread.php?t=181)

Again, I apologize for my short post :o but hopefully soon the others will be by to welcome you and share their experiences, knowledge and advice. Remember we are here for you both and to help in any way we can.

Hugs, Lori

[Lauren B]

Hi, Thank you for the quick reply. Roxy weight 20.6 lbs. I was given 500 mg Lysodren and told to give 1/2 two times daily. I was also told to give one Prednisone once daily for 7 days. The CC was not biopsied. I was directed to the loading information on this site, and it all fits, besides the Prednisone the vet told me to give during the loading phase.

[dsbailey]

Hi Lauren, Glad to see that you've made it over to the Big Leagues. As I stated in the Facebook group and also pointed out by Glynda, the instruction by your vet for the loading phase to simultaneously use prednisone and to load by days and not specifically clinical signs.
Someone will be along shortly with more information and hands-on experience. Best of Luck

Darrell and Lolita

[Lauren B]

Thanks, Darrell. Glynda asked me to start a thread here and to check in every day. So, here I am! I look forward to hearing the tips everyone has for me.

[DoxieMama]

Hi Lauren and welcome from me, too. I'm sure others with Lyso experience will be by to offer their suggestions, but Lyso and Prednisone at the same time? That's odd and doesn't make any sense to me. The link Lori provided should get you and Roxy off to a good start. I look forward to learning more about her!

Shana

[labblab]

Hello Lauren, I'm really glad you've joined us here! I'm especially glad that Glynda is already familiar with Roxy's situation since Glynda is definitely one of our resident Lysodren experts. ;)

I have never used Lysodren personally, but from sharing the experiences of others on the forum, this is my chief concern about giving prednisone simultaneously alongside Lysodren: you stand a greater risk of overdosing with the Lysodren which can result in longterm (even permanent) adrenal oversuppression.

There is no "set" predictable number of days that it will take for any specific dog to achieve a full Lysodren load. We've had dogs here who fully loaded within just 2-3 days; a few who have literally taken weeks. Because of the individualistic response, it's supremely important for the owner to be able to monitor their dog for changes in behavior, most importantly thirst and even slight changes in appetite. At that point, on whatever day it happens, the Lysodren should be discontinued until ACTH blood testing lets you know whether the dog is loaded or whether the dosing should be resumed.

The big problem with simultaneously administering prednisone is that the supplemental steroid may mask the behavioral signs that otherwise would have manifested from the lowering of cortisol. So the danger is that you continue giving the Lysodren and you further erode the adrenal cortex beyond the point of health and safety. By the time you finally do test on an arbitrary day (in your case, it sounds as though it will be at the seven-day mark), your dog's natural adrenal function may be way oversuppressed.

Some years ago, it was more common for us to see vets simultaneously load while also giving prednisone. We seldom experience it anymore. I'm guessing that vets perhaps thought they were making the loading process gentler in some way. But in reality, I'm fearful that it is more likely to complicate the loading process and muddy the waters. The biggest risk from unintentional oversuppression is creating a permanently Addisonian condition whereby the dog has to remain on prednisone for life. Unfortunately, we have seen that very thing happen.

If it were me, I'd want to ask my vet for the reasoning behind the prednisone (actually, I'd want to discontinue it). But at a minimum, I'd want to discuss the worries that I've expressed above: while taking the prednisone, how will you be able to judge whether Roxy is fully loaded earlier than at the end of seven days?

Marianne

[Lauren B]

Hi Marianne,
I appreciate your feedback and share your concerns. I have the Prednisone yesterday out of fear of going against the vet's wishes. Today, I decided to go with my gut and only give the Lysodren. The vet explained that the speed was a way to balance things out as the cortisol drops. I agree with you that it doesn't make sense and gives me less clues to when my dog is finished loading. One thing we didn't discuss is the completion of loading. I assume I just stop the meds and call for a blood test? Does it matter how many days go by between losing and starting maintenance?

[Lauren B]

Thank you for the warm welcome. I agree about the Prednisone.



Hi Lauren and welcome from me, too. I'm sure others with Lyso experience will be by to offer their suggestions, but Lyso and Prednisone at the same time? That's odd and doesn't make any sense to me. The link Lori provided should get you and Roxy off to a good start. I look forward to learning more about her!

Shana

[dsbailey]

Hi All (Been a while),

One thing Lauren mentioned to me in the Facebook group was the dog wasn't presenting strong clinical signs of hunger or thirst. Lauren, please elaborate a bit on that.

Darrell

[Lauren B]

She showed typical signs of Cushing's at one point, but no longer does. At this point, the symptoms are eating quickly, Calcinosis Cutis and back leg weakness. She does not have excessive thirst or urination and her urine sample was not diluted.




Hi All (Been a while),

One thing Lauren mentioned to me in the Facebook group was the dog wasn't presenting strong clinical signs of hunger or thirst. Lauren, please elaborate a bit on that.

Darrell

[labblab]

Hmmmm... Aside from the possible calcinosis cutis and hind end weakness, Roxy really does not fit the profile of a typical Cushing's patient. This is worrisome on two fronts. First, since the lesions have not been biopsied, they may not actually be CC. Even if so, there can be causes other than Cushing's even though Cushing's seems to be the most common cause. However, the literature says there are occasionally infectious or other systemic underlying illnesses that can result in CC deposits.

So is the Cushing's diagnosis really accurate in Roxy's case? The fact that her earlier symptoms disappeared within two weeks of a dietary change is not consistent with Cushing's at all. It would be nice if it were true, but Cushing's cannot be cured simply by changing food. So an accurate diagnosis is the first question. Can you find out the exact numbers for Roxy's ACTH test?

The second problem is that, even if she does have Cushing's, Roxy's lack of overt behavioral abnormalities will make it much harder to judge the completion of the load. Normally, you are watching for changes in the abnormally elevated water and food consumption. In the absence of those signals, it will be much harder to judge whether the endpoint of loading has been reached. (In answer to your earlier question, yes, as soon as you suspect that loading has been completed, you call to schedule a monitoring ACTH test. How quickly you start maintenance and the size of the maintenance dose will depend upon the ACTH result, how quickly the load was achieved, and the loading dose that was used.)

I am really sorry to interject so many questions for you :o. But in good conscience, I feel I need to bring them up. Lysodren is a serious medication, and if you have any doubts at all about this situation, you can always temporarily cease the load altogether until any remaining questions are sorted out. If you do decide to proceed, however, I think you need to be upfront with your vet about your decision to withhold the prednisone. We are not vets ourselves, and it is important that your own vet be aware of any medication changes. If your vet mistakenly thinks you are continuing to give the prednisone when you are not, this may have an unforeseen domino effect on other treatment instructions or test interpretations. So it's best to openly discuss this decision with your vet.

Marianne

[Lauren B]

She also has the thin skin and black head like dots on her belly. We started at one vet who looked at a piece of skin under the microscope, guessed at the skin infection and gave her a shot of Convenia, when that did not work, ten days later, he gave her a steroid shot. I then tried another vet, who ran the cortisol urine test and standard blood work, when I mentioned Cushing's. The urine test came back high and labs showed high liver enzymes. Particularly the ALKP. This vet said he could not rule out Cushing's and suggested we see a Dermatologist. I then asked on a local Facebook page for recommendations for a vet experienced with the condition and made an appointment with the third vet. As soon as he walked in, he said her skin looked like Calcinosis Cutis and he began explaining Cushing's and the testing involved. He also talked about how the thyroid is often off in these dogs, so that test was run too. Her thyroid came back fine but the ACTH was high. The pre was 1.2 and post was 23.4. The vet said she definitely has Cushing's. When I asked about the original symptoms disappearing, he said he wouldn't be surprised if she was teetering on diabetes and when she lost weight, that was controlled, so the symptoms improved. Although no infections seem to be making the skin raw, the skin is horrific at this point. Its hard little lumps and very tough skin with hair falling out on both sides and part of her neck. Fortunately, she does not seem at all miserable. Just a bit itchy.


Hmmmm... Aside from the possible calcinosis cutis and hind end weakness, Roxy really does not fit the profile of a typical Cushing's patient. This is worrisome on two fronts. First, since the lesions have not been biopsied, they may not actually be CC. Even if so, there can be causes other than Cushing's even though Cushing's seems to be the most common cause. However, the literature says there are occasionally infectious or other systemic underlying illnesses that can result in CC deposits.

So is the Cushing's diagnosis really accurate in Roxy's case? The fact that her earlier symptoms disappeared within two weeks of a dietary change is not consistent with Cushing's at all. It would be nice if it were true, but Cushing's cannot be cured simply by changing food. So an accurate diagnosis is the first question. Can you find out the exact numbers for Roxy's ACTH test?

The second problem is that, even if she does have Cushing's, Roxy's lack of overt behavioral abnormalities will make it much harder to judge the completion of the load. Normally, you are watching for changes in the abnormally elevated water and food consumption. In the absence of those signals, it will be much harder to judge whether the endpoint of loading has been reached. (In answer to your earlier question, yes, as soon as you suspect that loading has been completed, you call to schedule a monitoring ACTH test. How quickly you start maintenance and the size of the maintenance dose will depend upon the ACTH result, how quickly the load was achieved, and the loading dose that was used.)

I am really sorry to interject so many questions for you :o. But in good conscience, I feel I need to bring them up. Lysodren is a serious medication, and if you have any doubts at all about this situation, you can always temporarily cease the load altogether until any remaining questions are sorted out. If you do decide to proceed, however, I think you need to be upfront with your vet about your decision to withhold the prednisone. We are not vets ourselves, and it is important that your own vet be aware of any medication changes. If your vet mistakenly thinks you are continuing to give the prednisone when you are not, this may have an unforeseen domino effect on other treatment instructions or test interpretations. So it's best to openly discuss this decision with your vet.

Marianne

[Lauren B]

I forgot to mention that I found a document written by Feldman that spoke to the way of treating dogs who are not polydipsic. It bases the load on how the dog's appetite is. So, that is the method I was planning to go with.

[labblab]

Lauren, by any chance can you take a digital photo of Roxy's skin lesions and upload it to your photo album here? I'm just curious to take a look, as well.

In order to create a photo album, after you log on to the site, just click on the "User CP" button at the upper left-hand side of any page. Once in your Control Panel, you'll see an option for creating a personal photo album. If you choose the public viewing option, registered members will be able to view your photos, but anybody who is not registered here cannot. ;)

Marianne

[Lauren B]

Hi,

I created an album. I am not sure how to share it with you though.


Lauren, by any chance can you take a digital photo of Roxy's skin lesions and upload it to your photo album here? I'm just curious to take a look, as well.

In order to create a photo album, after you log on to the site, just click on the "User CP" button at the upper left-hand side of any page. Once in your Control Panel, you'll see an option for creating a personal photo album. If you choose the public viewing option, registered members will be able to view your photos, but anybody who is not registered here cannot. ;)

Marianne

[Harley PoMMom]

Although I'm definitely not an expert on CC it sure looks like CC to me. I'll supply the link, here, to Roxy's album :) : http://www.k9cushings.com/forum/album.php?albumid=1183

One our members, Renee, has an album with various stages of CC on her Tobey, here's a link to her album in case you are interested: http://www.k9cushings.com/forum/album.php?albumid=805

I'm also including a link to her thread as well: http://www.k9cushings.com/forum/showthread.php?t=5908&page=83

And for Roxy's weight of 20.6 lbs the Lysodren dose would be 468 mg, the recommended dose is 50 mg per kg of the dog's weight, so the 500 mg is just a tad over but should be ok. Just really observe her when you place her meal on the floor, you want to look for any hesitation or pausing in eating, even if she just would look away for a second, if this happens you withhold the Lysodren and get an ACTH stimulation test done. Some symptoms of a dog that may be over loaded are diarrhea, vomiting or lethargy, so no Lysodren if these symptoms are seen and in this case prednisone may be needed to supplement the cortisol that the adrenal glands aren't producing.

Lori

[labblab]

Thanks so much for those photos -- yup, looks like CC to me, too :o. I'm going to add "CC" to your thread title so that other members who are also dealing with calcinosis cutis will be more likely to stop by.

As Lori says, Renee's thread has a lot of helpful info. Unfortunately, though, Renee does not post very often any more. So here are links to two threads of members dealing with CC who are currently quite active:

http://www.k9cushings.com/forum/showthread.php?t=8597

http://www.k9cushings.com/forum/showthread.php?t=8606

In the cases of these two dogs, the CC resulted from longterm supplemental oral steroids as opposed to elevated cortisol. But the manifestation and treatment of the CC remains the same.

Marianne

[Lauren B]

I appreciate your help with sharing the link and your advice!


Although I'm definitely not an expert on CC it sure looks like CC to me. I'll supply the link, here, to Roxy's album :) : http://www.k9cushings.com/forum/album.php?albumid=1183

One our members, Renee, has an album with various stages of CC on her Tobey, here's a link to her album in case you are interested: http://www.k9cushings.com/forum/album.php?albumid=805

I'm also including a link to her thread as well: http://www.k9cushings.com/forum/showthread.php?t=5908&page=83

And for Roxy's weight of 20.6 lbs the Lysodren dose would be 468 mg, the recommended dose is 50 mg per kg of the dog's weight, so the 500 mg is just a tad over but should be ok. Just really observe her when you place her meal on the floor, you want to look for any hesitation or pausing in eating, even if she just would look away for a second, if this happens you withhold the Lysodren and get an ACTH stimulation test done. Some symptoms of a dog that may be over loaded are diarrhea, vomiting or lethargy, so no Lysodren if these symptoms are seen and in this case prednisone may be needed to supplement the cortisol that the adrenal glands aren't producing.

Lori

[Lauren B]

Thanks for sharing the links. From what I've been reading, the CC is a tough condition to treat. I sure hope we can manage to get it under control. Right now, her skin in some spots is really hard and there is a crusty, almost salt textured feeling to her skin. Nothing is oozing or infected anymore though, thank goodness. So far, the only real change I see in her is that she's sleeping more soundly. She has also been asking to sit outside, and jumping up on the small wicker couch outside to lay in the sun. She hasn't really done that for about a year. In fact, she had pretty much stopped jumping up onto things all together. I hope this is a good sign.


Thanks so much for those photos -- yup, looks like CC to me, too :o. I'm going to add "CC" to your thread title so that other members who are also dealing with calcinosis cutis will be more likely to stop by.

As Lori says, Renee's thread has a lot of helpful info. Unfortunately, though, Renee does not post very often any more. So here are links to two threads of members dealing with CC who are currently quite active:

http://www.k9cushings.com/forum/showthread.php?t=8597

http://www.k9cushings.com/forum/showthread.php?t=8606

In the cases of these two dogs, the CC resulted from longterm supplemental oral steroids as opposed to elevated cortisol. But the manifestation and treatment of the CC remains the same.

Marianne

[molly muffin]

Hello and welcome from me to. With cc and using lysodren, you will want a post ACTH of under 5.0ug when you load. This is what you want with lysodren and it is gives the best results for cc.

You might want a topical antibiotic like trichlor to make sure the skin doesnt get infected as they can be quite nasty looking when they open.
It gest worse before it gets better and the goal is for all those spots to come through and no new ones to develope once you have the cortisol under 5 ug

Yes, even a change of eating, like stopping and looking around when normally she would goble up the food nonstop can be a sign of load completion. Then you stop and call for the ACTH. There isn't a very big gap between completion and test. Then i can't remember off the top of my head if it is one or two weeks you wait before starting maintenance dose, once the load is confirmed.

[molly muffin]

Hello. Thought I'd check in and see how everything is going. Did you start lysodren with the prednisone? Are you still loading or complete?

[Lauren B]

Hi,
I did not use the Prednisone in combination with the Lysodren. I ended up loading for four days, at which point Eoxy started getting loose stools. I had a hard time getting a hold of the vet. When I did, he told me to begin the maintenance phase. We are scheduled for the 30 day ACTH next week. Overall, Roxy seems to be feeling good. She's more affectionate than usual, can now jump on the furniture to sit with me and is enjoying laying in the sun at times again. She is also very playful. Her skin has not shown much improvement. She does not currently seek to have any infected areas though, and I am thankful for that. Thanks for asking about her!

[Harley PoMMom]

I am very worried that the vet had Roxy start the maintenance dosing of Lysodren without performing an ACTH stimulation test. The ACTH test results are critical when deciding when the maintenance regimen begins and what dose is needs to be. If she was showing signs of being loaded, such as the loose stools, her cortisol could of dropped too low and in that case the Lysodren is stopped and prednisone is given until cortisol production has started back up, which is checked with an ACTH stimulation test. Is she eating and drinking/urinating normally?

Lori

[Lauren B]

I understand that the way the vet is handling this is not what is considered typical on this site. I did get 4 references from people who had Cushing's dogs treated by him and they were all happy. This was the third vet I tried in my area and I really cannnot afford to start over again. So, I'm going with what he says and hoping for the best. As of now, she is eating and drinking normally and her stools are fine. She seems to be feeling better overall. I guess next week will tell when we see what the ACTH test shows.

[Squirt's Mom]

I understand that the way the vet is handling this is not what is considered typical on this site.

I just want to make very clear that the long-established manner in which Lysodren should be use has nothing to do with "this site" but rather with what many learned veterinarians have shared over the decades....which we simply pass on to our member in an effort to help them give their dogs the very best life possible with Cushing's.

These are very, VERY powerful drugs and dangerous when misused. So when we see that misuse in play for one of our members, we speak up hoping to save the dog and thereby save the member a great deal of unnecessary expense and sadly too often pain when that misuse of the drug costs a life.

So for your growing knowledge and the knowledge of any who may read your thread in the future, I wanted to make it clear that these are NOT our protocols here at K9Cushing's but instead are set by the medical professionals and drug manufacturers. ;)

[Lauren B]

I was not doubting the advice given here. I was just trying to make sure everyone is clear on the fact that I am aware that the vet we are seeing is using his own method, and it does not match the information I learned here. I know this, and am just praying he has enough experience to know what he is doing.

[molly muffin]

you get the next ACTH test this week don't you? Or is it next week?

Just keep an eye on her and if anything looks the least bit off, get the test sooner

[Lauren B]

The test is scheduled for Monday.

[molly muffin]

Great. So it's not far off now. Just keep an eye out for anything that would signify a problem. Crossing fingers for a good result on the ACTH. :)

[Lauren B]

Thank you!

[Lauren B]

Roxy's ACTH results came back today. Her pre was 0.6 and post was 2.2. The vet said the numbers were "ideal" and wants me to continue 1/2 pill twice weekly. I do see a vast improvement in Roxy's quality of life. I hope her CC will clear soon. I appreciate all of the information this board offers.