Duke-5 1/2 year old male Vizsla newly diagnosed

[Duke's Mom]

Hi group—this is a VERY long first post sorry…

I’m the mom and breeder of Duke a 5 ½ year old intact male vizsla. We are in the early stages of diagnosing HAC and trying to identify pituitary origin (which I believe he has) vs adrenal vs atypical vs stress induced….all different things the vet generalist or the vet radiologist that did the u/s have hypothesized.

So her is Duke’s lengthy background that lead up to my deciding he had Cushing’s Disease (HAC) and asking for him to be tested….I’m a RN and a very good diagnostician.

10+ months ago Duke developed a non-healing irritated area on his hip surrounded by hair loss in the area, he was seen by the vet and it was thought to be insignificant. The hair loss was blamed on licking the area, something we had never seen him do but accepted the explanation. When it had not resolved after 4 months , including treatment x1 with systemic antibiotics, the area remained inflamed but not tender and the hair breakage/loss remained we decided it was time to have the irritated hard bump removed – January 2017. Prior to removal, Duke had pre-op blood work and his rabies and DPT boosters done 2 weeks apart from each other and both before the surgery- I feel the immunizations may have has a role in starting his HAC. The bump and irritation was only in the skin and the pathology came back as “comedones”. Post removal of the irritated area Duke healed very poorly and developed a wound infection, reacted to the absorbable stitches and removed then himself (now it did itch and bother him) reopening the wound. It was sutured closed again with a less reactive material, was treated with two different antibiotics for the wound infection and took over 3 months to heal from a small excision in the skin. Data points…comedones, delayed wound healing, compromised immune system/infection not responsive to normal treatment. While healing from his excision Duke started to lose LOTS of hair. First around his neck and fore-chest, then in front of his ears, we thought this was from the inflatable donuts rubbing his hair off. He also started to drink LOTS of water, we thought this was because the inflatable donuts (2 of them) made him warm. The hair loss continued and we thought he was having an allergic reaction to his collar now that he did not have hair around his neck.
Jump ahead a few months....the polydipsia, polyuria continued and progressed even after getting out of the donuts, the hair loss also progressed and Duke had a bald belly, chest, and very thin hair around his neck and in front of his ears, any areas where he had lost hair remained patchy or bald with no regrowth. 3/2017 Duke’s dog mom died from hemangiosarcoma and the dog dynamics changed. Duke is a VERY sensitive dog, as are most vizslas are. 4/2017 Duke’s polyuria and polydipsia increased within a month of his mom dying, the hair loss continued, he started to have diarrhea and occasionally frank blood in his stool, developed insomnia waking multiple time to drink and pee at night, we saw behavioral changes with increased aggitation and he was always starving. Duke was treated x2 with flagyl for the diarrhea and the vets (every time we went in a different vet in the practice saw him so there was no continuity of care) seemed unconcerned.
The polydipsia, polyuria, polyphagia and insomnia continued and we now were not getting any sleep x 6 weeks. Duke also developed a thick hard non-tender , thickly crusted area between his shoulders that I decided was a calcinosis cutis and swollen glands in his neck. I put together a detailed history and summary of my findings and presented it to one of the vets and said I wanted him tested for HAC with a LDDT. I also said that I needed one vet to step up and take charge of Duke's case because the lack of continuity of care had prevented them from seeing what I was presenting in his clinical case summary…..
So on the test results…

1/17/17 pre-op panel—everything WNL
Key values
ALT 66 (12-118)
Alk Phos 59 (5-131)
BUN 15 (6-31)
Crt 0.7 (0.5-1.6)
Glucose 96 (70-138)
WBC 6.8 (4.0-15.5)
Neturophils 78%
Plt 229 (170-400)

5/19/2017—Cushing’s testing , and other requested blood work—listing mostly the abnormal values.. He had a complete chem panel, thyroid, UA, CBC, & LDDT
Chem and CBC:
ALT 144 H (12-118)
GGT 14 H (1-12)
Alk Phos 108 (5-131)
Bun 13 (6-31)
Glucose 104 (70-138)
Cholesterol 263 (92-324)
Precision PSL 92 (24-140)
WBC 10.6 (4.0-15.5)
Neutrophils 81%
Plt 373 (170-400)

Thyroid
Total T4 1.2 ( 0.8-3.5)
Free T4 26.2 (8-40)

UA
SG 1.002 L (1.015-1.050)
PH 8.0 H (5.5-7.0)
Struvite crystals 0-1
Fat Droplets 4-10
Other Sperm
Everything else neg

LDDT Cortisol Serial 3 (8 hour test)
Sample 1 5.3 H (1.0-5.0)
Sample 2 Dex 1.6 H (0.0-1.4) 4 hr post
Sample 3 Dex 2.6 H (0.0-1.4) 8 hr post

The vet called these “border line values” and said possibly adrenal. She suggested a HDDT and IMS consult. I told her from my reading I felt quite sure these values were consistent with PDH and wanted to start treating now as such. The insominia and thus our not sleeping was impacting all of us and we could not continue this was much longer.

5/20/17-- Duke was started on Vetorly 1mg/lb dosage—70 mg I decided to give the medication at night with his third meal since we were given no guidance (and my research regarding the peak effect made sense regarding helping the insomnia). 4-5 days in we saw a decline in the polyuria and polydipsia , although still not down to normal, there was no noticeable change however in the insomnia or hunger. Duke was also started on Baytril x 2 weeks for an unknown infection d/t the swollen lymph nodes/glands in his neck.

14 days after starting treatment Duke had his first ACTH stim test (we moved his medication to AM x 6 days before the test) and then in the afternoon AFTER the test he had an ultrasound. Below are the results. He also developed and eye infection and was started on Tobramycin for that.

6/1/17 ACTH stim test on Vetoryl
Sample 1 4.5 (1.0-5.0)
Sample 2 9.0 (8.0-17.0)

The vet said levels were fine no change needed. I sited the Vetoryl drugs dosage guidelines regarding ACTH stim test and a dog still showing multiple symptoms of Cushing’s (poly x3 + insomnia)… this seemed to be new info for the vet. She said to increase him from 70 mg to 90 mg/day, dogs weight is 70 lbs.

6/1/17 Ultrasound
Comments : edited
there are bilaterally enlarged nodular shaped adrenal glands. The left adrenal measures .86 cm and the right adrenal gland measures .87 cm and normal adrenal glands measure up to .74 cm in thickness..
Diagnosis/differentials:
The changes in the liver could be most consistent with a mild vacuolar hepatopathy with biliary stasis and r/o cholangiohepatitis and there is gastroenteritis and mild pancreatitis most likely due to dietary causes and r/o inflammatory bowel disease with bacterial overgrowth/dysbiosis. The adrenal findings are most consistent with Cushing's disease (pituitary dependent) and r/o stress hypertrophy.

Current Treatment
Vetoryl 90 mg QD-at night with food 1-2 hours before bed, melatonin 6 mg BID, Omega 3-6-9 FA 2 caps BID, probiotic (Vet’ Best Gas Buster) BID, D-Mannose 500 mg BID- bladder and renal flushing and support, Acetylator 2 caps BID-GI and bowel support supplement, Cell Advance 800 2 caps BID-immune support supplement, Theanine 100 mg TID.

So here is what I know….my dog most likely has PDH and IBD, as I suspected. There is a question the vets are bring up if this is really Cushing’s or stress induced HAC. They also discussed atypical before the u/s report came in and because he is not neutered, I’m ignoring most of this. Duke is not currently managed symptom wise.

Next step is IMS consult and holistic vet consult. I do not plan on using the Royal Canine Hydrolyzed Protein Diet that was suggested but will explore other high quality diets including raw. Right now he eats Wild Calling White Fish and rotates through a few other of their exotics—he also eats lots of fresh fruit he picks from our trees- citrus, figs, stone fruit…and lots of people food my husband shares with him. So far we are over $2000.00 into getting this disease under control with no vet insurance.

I’m very open to thought and ideas regarding treatment, diet and how to manage the insomnia the hardest problem to live with.

[labblab]

Hello and welcome, although I'm surely sorry about Duke's ongoing issues. Thank you so much for giving us such a complete summary of his health history and current status. I'm afraid I must give a briefer reply than I'd like (I must soon head off for some dental work -- YUCK!). But here are a few "first" thoughts in kind of a jumbled fashion.

You are correct that Duke's LDDS result was consistent with PDH, as are his bilaterally enlarged adrenal glands. However, one concern with both those results are that other physical ailments can result in "false positives," as well. If the body is stressed by some condition other than Cushing's, the adrenals may be prodded into working overtime and produce those same results. It is true that Duke exhibits certain symptoms of Cushing's. However, it is quite unusual for his ALKP to fall within normal range. And the fact that he had a number of ongoing issues at the time of testing (inflammatory bowel, possible pancreatitis, possible liver/gallbladder abnormalities, enlarged lymph nodes, etc.) makes the overall diagnosis more worrisome to me. So I am guessing this is why your vets are still puzzling over things, and I have to agree that question marks remain for me, as well.

However, since you've already started Vetoryl, here are some thoughts about that. You are correct in your understanding that a post-ACTH of 9 ug/dL is still too high if symptoms remain uncontrolled. However, that is the case after a dog has been treated for a full month. As I understand it, Duke was first tested (as recommended) after two weeks of treatment. Dechra's current recommendation is not to make any dosing increases until the first thirty days have passed. This is because cortisol levels typically continue to drift downward during the first month, even on an unchanged dose. So I actually would not have increased his dose, either. Duke will be due for another ACTH at that thirty-day mark, and it will be important to see how much further his cortisol has dropped on the higher dose.

Also, in terms of long-term treatment, it would likely be better either to switch to morning dosing or to twice-daily dosing (in which case you divide the daily dosing in half). I understand that the insomnia is an issue for you, but by dosing only once daily at night, it may well be the case that the drug's effectiveness has worn off by the next morning, so Duke's cortisol level is rebounding again all throughout the waking day. If that's the case, he will remain symptomatic. Also, you will always have to jockey his dosing schedule in advance of ACTH testing. Twice daily dosing would seem to be the better option in his situation.

Last but not least, if it were me, I would definitely give the Royal Canin a try. I know the ingredients sound awful and I wouldn't necessarily want to feed it long-term. But given Duke's intestinal issues, I would want to try to settle his inflammation ASAP. The Royal Canin is specifically recommended as an initial elimination diet, and that's where I'd start. Given the range of what he is eating now, there's no telling whether his condition is being worsened by an allergic food reaction or an inability to properly process something he's scavaging. And as far as your husband -- I would tell him in no uncertain terms to lay off the people food! You may not be able to totally monitor Duke's fruit intake in the yard, but your husband can certainly stop contributing to Duke's digestive woes! ;)

Last but not least, I think consultation with an IMS would be a very good idea. I think there are enough question marks about Duke's overall picture that you'd benefit from having a specialist take a look.

Marianne

[DoxieMama]

Hello and welcome from me, too, though I apparently have less time before I must head out so my reply will be even shorter than Marianne's. Besides, she covered all the jumbled thoughts my pre-caffeinated brain has this morning anyway. ;) I sure hope you can get Duke's digestive issues under control, and look forward to learning more about him.

Shana

[Joan2517]

Wow! Welcome from me, too. A very informative post! I am pretty sure that my Gable is part Vizsla and he has stomach issues as well. He is also very sensitive, takes things very much to heart. He's my big baby...

I just wanted to say hello and to welcome you to the forum.

[Duke's Mom]

My poor boy we can’t seem to find the right vet to get him on a good treatment plan and feeling better.:(

After initially starting on the Vetoryl in May and having the ACTH stim test 2 weeks later to check treatment response and a ultrasound that showed many things including enlarged adrenal glands we were sent to (the wrong) IMS. The IMS said she did not feel Duke has Cushing’s despite the lab results, and all his symptoms. She did a battery of test – all normal- malabsorption, more extensive liver test, bile acid test, fecal for ova / parasites, urine culture….. B/P and even repeated part of the ultrasound exam. She said she felt the Vet Radiologist that did the ultrasound “over calls things”, the IMS said she considers adrenal glands normal up to 0.9 CM so using her definition of normal he no longer has enlarged adrenal glands. What is the normal size for a medium-large dog? She wanted to do many more tests but at over $1500 for the first visit and everything being “normal” things were not making sense. She was pushing hard to do a CT scan (they have one there) but I said if needed, I’d prefer a MRI which I feel is better for soft tissue (but they can’t bill and collect for that since they don’t have one), she suggested that could be done after the CT--- we did neither. She had me stop the Vetorly, start on a strict “hypoallergenic hydrolyzed protein diet” and start Panacure x10 days event though stool was clear and put him on Tramadol for pain. She said she felt Duke has IBS and “you cannot have inflammation with Cushing’s” so the fact that she sees signs of intestinal inflammation means he does NOT have Cushing’s. (Not sure I agreed or believe clinically with this statement but I did go along with her POC) What experience do other have regarding GI problems in Dogs with Cushing’s- untreated—can such absolute statement ever be made?

We followed her orders--stopped treating the Cushing’s and started on a hydrolyzed chicken hypoallergenic food and treats (he is chicken sensitive but I was told he would tolerate this). Within one week after transitioning fully to the new food he was much worse, passing red jelly mucous, strainging with hind legs shaking when he would go to the bathroom, again and again. We switched to a hypoallergenic vegetarian hydrolyzed soy food next and this too he did not tolerate—no need for details . Mean time the skin lesion on his back has spread and grown 4 fold in 1 month, insomnia continues, as do all his other symptoms. Duke was started on Flagyl following the Panacure and the IMS wants him on the Flagyl x30 days “to reset his system”. The IMS said she wanted to do 6-8 punch biopsies including of normal skin to see what is going on with his skin lesion, that she felt was a lipid condition not CC. At this point I canceled that appointment and knew it was time to find as new specialist. I also cooked Duke ground lean turkey-oatmeal-rice-and butternut squash--- stool and tummy is much better!

Over the weekend Duke had a spontaneous rupture of a back foot toe tendon- no associated trauma as a cause—is this Cusings related?. Today we saw a Veterinary Dermatologist (figuring from there I could get referred to a new IMS). She reviewed his records, test results looked at him, his skin, hair loss and back lesions and said “He has Cushing’s” and the lesions on his back are calcinosis cutis I don’t need a biopsy to tell you what they are. She also indicated that when she does do a punch biopsy only one small sample from the lesion is needed not 6-8 biopsies but with his history of suture reactions and delayed healing she did not want to disturb his skin. She said the lesions can also be diagnosed (when they become large like these are) by x-ray where the calcium deposits will show-up. She said to get DMSO gel and apply it daily and most importantly we were referred to a new IMS who we will see in 2 days. She said he showed no signs of allergies (which I knew). I’m hoping this will be the right IMS and feeling like we also need to get a new vet generalist since so far nothing has gone right and I don’t think they have the comfort or experience with Cushing’s and from the start I had to ask for him to even be tested and even with the positive tests they still could not recognize the disease. Very frustrating and disappointing.

The really sad part of this is I know Duke is in pain. I did not know Cushing’s disease was painful, but 2 weeks ago I was speaking with a human endocrinologist about my dog and his probably Cushing’s diagnosis. She said when people get Cushing’s it almost instantly ages them 10 years- skeletal and organ wise and is very painful. Duke is and has clearly been in pain.

[Joan2517]

Poor Duke, but this Dermatologist sounds like she knows what she's talking about...maybe now he will get some relief. I hope the visit with the new IMS gives you more confidence in Duke's treatment.

[Carole Alexander]

Hi and welcome. Duke's case is very complicated and you are doing a superb job as his advocate. I can offer little by way of informed thinking about his situation except that you have to find an IMS in whom you have confidence and who can begin to pull all of the pieces together to form a treatment plan. There is however, excellent information on this forum about treating CC and many owners have effectively treated it. My best to you and Duke.

[molly muffin]

Hello and welcome from me too.

CC is a definite sign of high cortisol, causing calcium deposits and very hard to get rid of. All those calcium deposits that are there already need to pop through and can look much worse before they get better.
One of the keys we have found with cc involved is that the post ACTH test needs to be down to under 5.0ug to get control of the cc.

High cortisol over a period of time causes the weakening in tendon and ligament and can result in tears occuring. We see this quite often with an ACL tear for example.

Poppycock that you cannot have IBD and Cushings together. One of our very long term cushing furbabies Zoe who has now passed on, had both and we've had others. Pancreatis is also quite common with cushings.

I'd do the twice a day dosing of cushing meds, (as marianne suggested earlier where the total dose is split into two doses like 45mg am and 45mg pm for instance) and to try and get control of the stomach issue, a bland diet, small meals of mushy chicken and rice or beef and rice. You want to boil the rice till it's a mushy consistency and then feed several small meals a day till you can get that flare up down. This is often what is recommended for pancreatis which his pancrease was showing some inflammation so this could help both.

A good probiotic which I think you are already giving.

[Duke's Mom]

Saw the new IMS specialist today and I think she is very good! She had reviewed all of the records and tests we had done (I dropped them off yesterday) and said that the first LDDT done back in May was diagnostic for pituitary dependent HAC. She was puzzles (as have I been) why all the clear clinical signs were being ignored and the dog not being treated. They did an ACTH stim test today to see how bad his cortisol levels are and based on this will decide which drug to start him on—Lysodren if level are very bad since that should bring the disease under control faster, or Vetorly BID dosing if levels are not that bad. She asked if I wanted them to do an xray to see the calcium deposits in the skin lesions so that a conclusive diagnosis of CC could be made. We did the xray and the deposits were there—no trauma, no infection risk- yet the other IMS never suggested this—wow. She said that unless we were wanting to consider treatment options such as radiation therapy for the pituitary tumor at some point, there was no need or point in doing any imaging to see the tumor; it did not change the treatment plan and so it was not needed. We already had the U/S showing the enlarged adrenal glands as well. There was some discussion about due to his young age at disease onset, the prognosis long term is not as good because the tumor has more years to grow and he may develop other neurologic symptoms at some point. He still has normal B/P (this specialist does not charge an additional $57 to check the BP). She was fine with my continuing on the home cooked diet since he is doing much better on it. She mentioned a supplement called Balance-IT that completes the vitamin and mineral needs for dogs on home cooked diets, but suggested waiting another week or so before making any changes or additives. Hope to have test results tomorrow and be starting treatment and moving towards our boy feeling better. I will be asking her for a referral to a new vet generalist in short time that she can work with assuming things continue on this positive track. It was a 100% different experience and I’m kicking myself that I did not make a change or do something sooner when things seemed off and odd!

[Joan2517]

Great! It's such a relief when you find a vet you can trust and work with. Not having faith in your vet is stressful and nerve-wracking...and Cushing's is stressful enough.

[Duke's Mom]

Call first thing this AM from the new IMS vet

ACTH Stim test results back

CORTISOL SAMPLE 1 7.6 ug/dL (1.0-5.0) HIGH
CORTISOL SAMPLE 2 27.2 ug/dL (8.0-17.0) HIGH

Definitely Cushings and given the results are only with him less than 20 day off Vetrol which he was on for 18 days, she feels if we waited longer the number may go up higher. She wanted to start induction treatment now with Lysodren given the severity of his symptoms and hopes we will see him feeling better in 1-2 weeks.

I was able to get the med at Costco for about $6.58 per 500 mg tab. If people know of better pricing for this drug I'd love that info .

His induction tx is going to cost $140-$280 for meds alone. The IMS wants to do a repeat ACTH stim 5-6 days after starting induction and of course has given us an RX for Dexamethasone if needed for emergencies. I'm feeling much more comfortable with the treatment plan and approach but in sticker shock on the drug cost!! Maybe if I had not blown $1700 in useless tests and consultations with the first IMS I would not be in sticker shock but we are up to OVER $4000 in vet , tests and drug cost and sill a very sick dog, cushings our of control and NO vet insurance. I feel awful even making this statement but it is the reality we are dealing with.

[DoxieMama]

Hi, I'm not experienced with the use of Lysodren so can only share what I've learned here. Having only 20 days between the Vetoryl and beginning Lysodren is a little concerning to me, but might be okay given his symptoms and ACTH results. My question about that is if his cortisol levels would be higher if you waited the full 30 days... then he'd probably need more Lysodren to load, right? And if that's the case, then the maintenance dose would be identified as perhaps a little higher? So... by not waiting, is it possible that he'll load sooner (and with a lower dose), and you'd start a maintenance dose that is too low (and then need to go through induction again to raise it)? Again, I don't know... just sharing my thoughts and questions. :)

I'm also curious if the IMS gave you instructions about what to look for during loading, and when to stop giving the meds, since you mentioned doing another test after a specified number of days. Typically, you do that test when you believe the dog is loaded based on their behavior not time. Lysodren loading instructions (http://www.k9cushings.com/forum/showthread.php?t=181) are posted here.

In any event, please let us know how loading goes. Posting daily is not uncommon while loading. ;)

[Duke's Mom]

The dose to start with Lysodren is very standardized based on mg/kg not on lab values so waiting longer would not affect the starting dose to load. The load period is also very individualized based on the dogs response and can be between 3-14 days I was told.

I have no idea if starting before a full 30 day washout with such a short period of time treating with the Vetoryl will adversely impact things. The IMS was more concerned with getting him started on appropriate treatment to bring his sever symptoms under control. The two drugs act very differently so I truly doubt the Vetoryl will impact his load on Lysodren, but I don't really know and have to put my faith and dogs well being in the hands and mind of this IMS who seems very competent, knowledgeable and concerned with Duke's well being.

The vet did give me detailed instruction regarding stopping the loading at the first signs of a pause in his eating and or significant decreased water intake -harder to assess since I have multiple dogs and he also drinks from the pool. She also included the GI symptoms...with instructions that when any of these occur to stop the load and bring him in for an ACTH stim. She practices in an emergency facility so I have vet access 24/7/365 even to do the ACTH stim test. Her treatment protocol however is that in the event the dog has not shown the physical signs to stop the load (can take 3-14 days she said) she repeats the ACTH stim test on day 5 or 6 of the load to see where things are at for safety. She also used Dexamethasone as the emergency rescue steroid to have on hand since giving it does not affect the ACTH stim test.

This all makes sense to me and although may be a bit conservative and may mean an extra $400 test, I like the safety.

She also put him on trazodone for sleep. First night no change in the insomnia, last night he (and I) slept for 4 1/2 hours straight the longest we have slept in 3 1/2- 4 months.

Dukes tummy/ stool issues seem to be 99% better since he has been on home cooked x 8 days now - no gas, no frequency, normal stool in every way. He is still lethargic/depressed and not playful but did pick two tangerines from the tree today and bring them to me to peel for him to eat-- this was a nice return to a normal behavior for him too

[DoxieMama]

Thanks for the additional info. I agree with you and my concerns are alleviated 100%!

[Carole Alexander]

Hi, just a note to say I am totally empathetic about the dollars and also to say you are not alone. Many of us here have spent thousands of dollars on tests and treatment, only to find out, oh, but no it's this other thing. Had Skippy had an MRI before starting treatment but after I told them about his neurological symptoms that the vets attributed to Cushing's, I would be two or three k ahead. But, you can't look back as you are where you are and at least you have an accurate diagnosis and his Cushing's is treatable. My best to you and Duke going forward!

[molly muffin]

Yes lysodren dosage is based on weight of dog solely and with a higher ACTH showing already then we have seen vets not wait for the full 30 day wash out. Some have gone sooner like 2 weeks, but this is Only safe to do with the confirming ACTH which you have.

Costco seems to have some of the better pricing for lysodren but could check with diamondback (online pharmacy many here use) to see what their pricing is.

The good thing with lysodren is that once the load is finished, the cost and testing goes down compared to vetroyl.

[Duke's Mom]

Question that I hope never to need to act upon the answer to...

What is the emergency rescue dose/protocol when using Dexamethasone?
For the emergency rescue I was given Dexamethasone 1 mg tabs #30. The instructions say to take one tablet (1 mg) if dog is in crisis. This seems like a very low dose for a 32kg/70lb dog. I was also told to call and bring the dog in 24/ 7 if he is in crisis for immediate testing and the emergency vet will contact the IMS--- but this is in an ideal world and in reality this may not happen for may different reasons so key thing is I need to know the rescue protocol. The IMS vet is not back in till Wed 7/5 and this is something that I can call and ask then.

[Harley PoMMom]

Prednisone is the usual medicine given, in an emergency, to replace cortisol. Dexamethasone is so much stronger than prednisone, so just to clarify, do you have dexamethasone or prednsione?

[Duke's Mom]

I was given Dexamethasone 1 mg tablets for emergency rescue. The IMS said she uses this instead of prednisone because it does not impact ACTH stim testing as much if given, so this is her preferred rescue drug. I assumed the bottle would have rescue doing instructions and it kind of does-- it says to give 1 tab (1 mg) in event of crisis. I will call Wednesday and get more detailed instructions but maybe that is all I need to know. Has anyone else be given Dexamethasone to use for emergency rescue? She was very clear about this and her reason to not use prednisone.

[labblab]

Your vet's reasoning about the dexamethasone makes a great deal of sense, and to be honest, I'm not certain as to why Dex is not always the preferred rescue steroid for the very reason she's given to you. If there is a danger that a dog's cortisol has dropped too low, it's really helpful to be able to perform an accurate ACTH immediately. When prednisone is given, the test must be delayed for 24-48 hours.

As far as the dosing, it'll be good to clear up the specifics tomorrow. But I'm guessing the info on the bottle is accurate. It really does not take very much supplemental steroid at all to replace the amount that is lacking should an Addisonian condition occur. The dosing is much, much smaller than is the case for treatment of an inflammatory condition, for instance.

Good luck, and keep us updated!

Marianne

[Duke's Mom]

Well yesterday afternoon-- just to be safe-- Duke had an ACTH stim test done on day 6 of his Lysodren induction treatment. Thus far he has showed no signs of being done- no change in appetite- enthusiasm and speed of eating, no decrease in excessive drinking/peeing, and since on home cooked x 2 weeks his stool and tummy have been fine. He has had increased hair loss and more erupting and crowing CC lesions on his back. I was not told to stop the medication yet based on his clinical signs still all being present.

First thing this AM I got a call from the IMS vet that we had gone too far, stop the Lysodren (he had 2 doses since his stim test) and start him now on the rescue Dexamethasone 1 mg AM and 0.5 mg PM. His ACTH stim test came back with NO stim and undetectable cortisol levels-- we went too far :(
Sample 1 & 2 both < 0.2

So Dex given, Lysodren stopped, dog seems 100% fine (vet said there can be a 72 hour delay in symptoms and blood levels) so although there is no stim from the ACTH test he may still have enough cortisol in his body/cells that he is not showing any signs. Hopefully the 2 additional doses after the blood test did not push him so far into over correction that he now will have Addison's disease. Vet wants to do a repeat stim on Wednesday -- that will only be 4 1/2 days after his last dose of Lysodren which was at 6 AM today. I'm to hold his AM dex on the day he goes in for his test. If it weren't for the fact that right now the dog seems happier and to be acting and feeling better than he has for months I'd be more worried-- but maybe that will change in a day or two.

I have not started treating his CC skin lesions yet with the DMSO. I spoke with the vet derm yesterday (who also thought the dog seemed to be doing great) and explained that I was waiting till after his induction treatment was done in case the DMSO made him nauseous and I did not want to mistake one drug side effect for another. This week I'll start the DMSO- just need to find a cute vest or t-shirt for a 70 lb dog to keep the other dogs from licking it and it getting on our furniture....

Has anyone had the Lysodren induction treatment go too far with no stim showing 6 days into treatment and the dog is still fine once the drug is stopped for a period of time? Should I expect to have a very sick dog in a few days?

[molly muffin]

Oh my goodness. No not usually within 6 days, but we have had dogs go too low

Hopefully he isn't permanently Addison, but he might not have to worry about being cushings any more either. As depends on if the adrenal glands grow back enough and how much.

[labblab]

Hello again from me. I'm afraid that only time will tell as to whether, or how quickly, Duke's natural adrenal function will rebound. Lysodren loading is a highly variable experience: some dogs fully load in only 2-3 days, others may take 2-3 weeks. So the number of days that it took Duke to load is really not a good prognostic indicator as to what the future will hold. It will all come down to the results of subsequent blood testing, both ACTH stimulation tests and also basic blood chemistries. When dogs are overdosed with Lysodren, not only can natural cortisol production be suppressed, but aldosterone (another adrenal hormone) may also be underproduced. Aldosterone controls the balance of sodium and potassium in the body, and it may need supplementation as well as the cortisol. A med in addition to the dexamethasone is needed for that. So I'm assuming your vet will also test Duke's blood chemistries on Wednesday, along with the ACTH.

You have asked whether Duke will become very ill in a few days. Your vet ought to keep that from ever happening by continuing to prescribe supplemental steroids (to replace both the lost cortisol and lost aldosterone if it's needed) for as long as the oversuppression continues. This may be for a short time if the tissue of his adrenal cortex rebounds; it may be for the rest of his life if it does not. Addison's is indeed treatable, but also requires vigilance and periodic monitoring just as does Cushing's.

So we'll be very anxious to hear how Duke is feeling, and also how the testing turns out on Wednesday. Please do keep us updated!

Marianne

[Duke's Mom]

Update on Duke...
Last week Duke had a repeat ACTH stim test and blood chemistry+electrolytes done. Electrolytes and chemistry were all normal so the drug has not eroded into the Adrenal cortex. He is still showing no stim and no measurable cortisol so we continue with the dexamethasone-- dose reduced to 1 mg a day now and retest in 2 weeks.

Duke seems to be doing and feeling great! He is finally happy and playful again (he is a young dog - only 5 1/2). His poly x3 have definitely gotten much better and we can even see a pale yellow color now when he pees. He is continuing on home cooked food for now and overall doing much better from a GI standpoint. It is very clear that his cortisol level impacts his bowel in a negative way and we even have a single soft stool daily about 3 hrs after he gets his dexamethasone. One week ago his insomnia returned :(. We are going to increase the dose of Trazadone tonight as suggested by the IMS and hope he starts sleeping again. Duke is starting to grow a bit of hair and has not had any new CC lesions pop out and the existing ones seen smaller and less angry. Overall he is doing great as we wait for his levels to come back up.

[Carole Alexander]

That is terrific news, I think. I am sure his age is working in his favor. Let us hope that he sails thru this setback and you can start him on a maintenance dose in the future. And, that he starts sleeping at night - have you tried melatonin?

Carole

[Duke's Mom]

Before going to the hard stuff (Trazadone) for Duke's insomina we tried and are still using melatonin-- 6 mg BID, he has been on that for 3+ months, doing nothing for sleep but he is starting to regrow hair a bit :D. He also has been getting the amino acid L-Theanine 100 mg TID - both meals and before bed-- this he has been on for just shy of 2 months with the original vet thinking it may help his insomnia-- it has not. The Trazadone worked for 2 weeks- the first week when he was also getting the Lysodren induction treatment and the first week after that, since then the insomnia is back but not as bad as before he started treatment. He will sleep about 3-4 hours now at night always waking between 3:30 and 4:30 AM. Hoping that as he stabilizes and get on maintenance therapy the insomnia will again go away. We have been not sleeping for about 5 months now so it was wonderful to have 2 weeks of regular sleep, even now with him sleeping till for a good 4-5 hours is a relief and improvement.

[molly muffin]

Ugh, we all need our sleep, us and them. So I hope he can make an adjustment with that.

You won't be doing maintenance until his adrenals can start to make and store some cortisol, so might not want to wait for that, as it's unknown how long it can take for adrenals to rebound. Excellent that his electolytes weren't affected. So that is a plus and him doing so well on the Dex is good too.

[Duke's Mom]

Duke update
Adrenals starting to regrow but not ready for maintenance yet
ACTH stim
Pre less than 0.2
Post 0.5
Dexamethasone decreased to 0.25 mg/day retest in 2 weeks

Duke continues to be doing and feeling great in this non cushings induced period. Hair is starting to grow back, polyuria and polydypsia are gone, polyphagia continues but this may just be Duke, he likes food. CC lesions are staring to flatten and soften and no new ones erupting.

All the GI problems are stable as well! He completed a 30 day coarse of Flagyl and is still a on home cooked diet. It is seems that his IBS was linked to elevated cortisol level-- opposite of what you'd think and expect. As Dukes cortisol dropped his GI issues and stool normalized, with the increased cortisol things were not good, this carried over to how his stool is affected by the dexamethasone-- too much and he has mushy stool, right amount and he is normal!

[molly muffin]

The nice thing is that you have a definite tell of when he is over producing cortisol.

The current ACTH shows way too low of levels still.

[Duke's Mom]

Insomnia help????:eek:

Duke's insomnia has been back for a month now and seems to be getting worse nightly. We had about a 2-3 week improvement in the insomnia when Duke first started induction treatment with Lysodren and was also started on Trazodone for sleep. There was a dramatic improvement that happened over a 3-4 day period and we both were sleeping for up to 6 hours for the first time in over 6 months. Over the past 4 weeks there has been a back slide and the insomnia is getting worse each night again.

Here is what we are currently using to try and help Duke sleep:
Trazodone 200mg at 10 pm
Melatonin 6 mg 2x day with meals
L-theanine 100 mg 3x day- with meals and at 10 pm

The previous IMS who was no good tried him on Tramadol 100 mg for sleep and it had no effect.

Duke is not having polyuria or polydypsia so this is not why he can't sleep. He is VERY hungry all the time and we have tried giving him a third meal at 10 PM and even feeding him at 3 or 4 AM when he starts with the nighttime crying, neither have made a difference or helped the insomnia. Some nights he seems sleepy but will not settle back to sleep and just cries, others nights he is up happy wanting to play and wanting to eat. I really could use some suggestions to try and get more than 3 hours of sleep a night.

[Harley PoMMom]

With a post of .5 ug/dl why did the vet decrease his Dexamethasone dose from 1 mg/day to .25 mg/day? Also, the days that he is active does it seem that these are the nights he cries and has the insomnia?

I'm thinking that since the dex. was decreased maybe the days he is active are a bit taxing on him and his body just can not produce enough cortisol to compensate for the increased activity which could make him feel really yucky and be the cause of his crying and the insomnia??

Lori

[Duke's Mom]

Duke has had insomnia since before he ever started treatment for crushing's as part of his disease symptoms- onset March 2017. We only got a brief break from the insomnia - 5-6 hours sleep when he did his Lysodren induction treatment. The insomnia seems to be caused by cortisol in his body. Since dexamethasone is a long acting steroid and much more potent then prednisone the IMS had been tapering it back as his adrenals grow back and just giving him enough to make-up the difference. There is no difference in his insomnia regarding his activity level but there are may other bad differences when we give him too much additional steroid. Dex has a half life of 48-56 hours more than twice that of prednisone and the potency is also much higher 0.75 mg dex = 5 mg pred, but then it builds in the body due to the long half life. So I do think that clinically we are right on track at 0.25 mg/day (which really is like 0.5 mg because of the long hale life). I wish the solution was as simple as giving him more dex.

[molly muffin]

How is Duke doing now? any change with the insomnia and crying? Poor guy, he just isn't having an easy time of it and neither are you with the lack of sleep.

[Duke's Mom]

Duke went in for another ACTH stim test today. IMS put Dex on hold till we get results and thinks we are done with it. She increased his Melatonin to 9 mg BID and we are going to try Prozac 40 mg at night for sleep instead of the trazodone since that is no longer working and he is up all night. We are going to give the second dose of melatonin before bed rather than with dinner. I may also experiment with decreasing his daytime melatonin to 3 mg if this does not work so he gets more of a nighttime boost . Hope it helps and that his levels come back that his is ready to start Lysodren maintenance treatment.

[labblab]

We'll certainly all be anxious to find out those ACTH results. In the meantime, I'm really scratching my head about Duke's recurrent insomnia. One question for you: I'm wondering why the vet is instructing you to give a morning dose of melatonin at all. As I understand it, the main benefit of melatonin as a sleep aid is to reset the body's natural circadian rhythm, meaning you would want to give it prior to the time you'd want to induce sleepiness -- not in the morning when you're wanting to be awake and alert. By giving it in the morning, it seems as though you'd be messing up the natural circadian cycle rather than restoring it. :confused:

For what it's worth, here's an article I recently read about the perhaps questionable practice of using melatonin to treat general insomnia in humans. Perhaps increasing Duke's melatonin may not really be a help. And again, I question why you'd be dosing in the morning at all. Just a thought to throw out there for your consideration.

http://www.huffingtonpost.com/entry/melatonin-dosage-and-risks_us_56deff8ce4b03a40567a1e1e

Marianne

[molly muffin]

I used melatonin before storms and found to my surprise that other behaviors I put down to habits, where eliminated also when she had the melatonin.

I'd stop daytime and go for evening only about 30 minutes before bed.

[Duke's Mom]

Last weeks ACTH stim test
pre 1.2
Post 2.3
Duke is starting maintenance Lysodern at 50% his induction dose since his post was less than 3. So 250 mg M, W, F and recheck his ACTH stim in one month.

He was tried on Prozac for sleep x 2 nights with disastrous results. The first night he was given 40 mg and was up most of the night. The next night the dose was increased to 60 mg with instructions to give and additional 20 mg if he woke up. I had an agitated and awake dog all night so Prozac was not the right drug to help Duke sleep. After the 2 sleepless disastrous nights the IMS reviewed everything again and here is when we came up with: Melatonin at night only 12 mg , L-theanine 100 mg at night only, and Trazodone 300 mg at night. First night on this he slept 4 hours woke to pee and went back to sleep for 30 min and then was up. Second night he slept about the same 4- 4.5 hours and back down for another 2 hours after getting up to pee so we are making improvement in the insomnia. I think that being back on the Lysodren may help with all this too. At least the agitation is over from trying the Prozac and we are both sleeping for 4 hour stretches now at night.

[Harley PoMMom]

I just quickly skimmed your thread trying to find his original Lysodren loading dose with no luck, could you tell me what it was? Thanks!

[molly muffin]

I think the melatonin only at night might help too.

[Duke's Mom]

Dukes Lysodren original induction load was 1500 mg a day (750mg BID) he did a 7 day load starting 7/1/17 which was a bit too long since he showed no stim on his first ACTH check and went on dexamethasone while we waited for his adrenals to regrow. He showed no signs of toxicity or being done with his induction until the day after his first ACTH stim check. Duke weighed 70 lbs at the time he started on treatment

8/11/17 (5 week after the load finished) he started his maintenance at 50% the loading dose since his post stim was less than 3. So for this month he is getting 750 mg a week as 250 mg M, W, F. He has has gained a bit of weight :( and is right now 74 lbs but I hope that we can get that off and then some over the next few months as he continues to stabilize. Next ACTH stim will be 4 week from the start of his maintance dose.

Since starting treatment on 7/1/17 Duke's CC have gotten better and are about 75% flatter and softer and healing. His hair is growing back, his polyuria and polydypsia are resolved and he is happy again and playful to the point of being creatively naught (it is a Vizsla thing). Duke has had no diarrhea, abdominal discomfort, or other GI problems-IBS- for almost a month now! Strange as it sounds for Duke his GI problems and IBS symptoms are directly tied to elevated cortisol level, and as soon as the levels came down they started to resolve. When he was initially put on the Dexamethasone rescue and the dose was a bit too high we had a bit of soft stool again, as soon as the dose was adjusted down his stool were fine again. The only problems we are still struggling with are insomnia, heat and activity intolerance and he still is VERY hungry -- but this is an animal that LOVES food.

[Harley PoMMom]

Glad to hear that the GI issues have resolved and that the CC has improved!! Hopefully his maintenance dosing regimen will keep the cortisol under control. You are doing such a wonderful job! Keep us updated, please. ;)

Lori

[molly muffin]

It really sounds like things are going very well, other than the insominia. Hopefully you'll find something that works for that too.

Crossing fingers

[Duke's Mom]

Insomnia Help Please!!!!

I'm desperate, it has been over 6 months since Duke and I have slept for more than 3-4 hours max and the last 2-3 weeks we are back down to less than 3 hours. Dukes restlessness and insomnia are getting worse although other symptoms seem to be improving. We have tried melatonin, Trazodone, Prozac and last night Xanax. Duke seems to be agitated and anxious and just can not settle down, the Prozac caused more agitation and anxious behavior with the dog panting, pacing, barking, pawing at me and crying. Last night was the first try with Xanax and while not as bad with the Prozac he slept less than 2 hours and was unbelievably agitated and anxious all night and morning, pacing, crying, pawing at me. I tried feeding him extra food around 12:30 AM when he would not settle down to go to sleep (full belly) and again fed him at 3:30 AM (cooked sweet potato and some canned food) hoping that the carbs and food would help him settle down-- no luck. I've tried the extra food before and even feeding dinner later or splitting his dinner into 2 meals hoping that a full belly would help with sleep but is has not. So far the only thing that has helped a bit has been the Trazadone at 300 mg and that has only allowed us to get 3-4 hours sleep AND does not seem to cause agitation. When he did his induction treatment with Lysodren we had a 2 week improvement in the insomnia (he was also started on Trazadone) with him sleeping 6 hours which felt like a miracle! The IMS seems stumped and I'm not sure knows what to do. It does seem like his days and nights are flipped since he is sleepy during the day and it is hard to keep him awake as he takes frequent naps. His worse hours regarding anxiety and agitation seem to be between 3 AM and 6 AM-- none of this makes any sense. I'm reaching the end of being able to continue much longer and can not function with no sleep as this problem is getting worse each night and we are getting less sleep each night .

[Squirt's Mom]

Just a thought - there are humans who react the exact opposite to some medications, like sedatives or narcotics. Instead of having a sedative or soporific effect they have the reverse effect and cause hyperactivity. A friend of mine and my daughter were that way. A pain pill would have them up chatting like magpies for hours and hours! Talk to the IMS about trying a mild stimulant and see what effect that has...but I would do that during the daylight. ;):D

[Harley PoMMom]

I wonder if Benadryl may help? Every now and than my boy, Marvin, gets these itchy spells which I give him Benadryl for and it makes him sleepy.

[molly muffin]

Actually what Leslie said is quite possible. We've seen dogs react to medications with hyper activity and anxiety.

Lori, has a good suggestion with the benadryl too, but I wouldn't do any of this together.
First I'd try taking him off of all the medication for prozac, xanax, etc. And have him off for a few days so you know it is all out of his system, then try the benadryl.
I know that this may mean less sleep during these couple days but the object is to make sure he is clear and see if the meds are having an adverse affect on him, then to try the benadryl.

[Duke's Mom]

Thank you so much for the suggestions and ideas. It is very clear to me that Duke reacts in a paradoxical way to may things including medication to help his insomnia. Luckily he only had 2 doses of Prozac and one dose of Xanax , when it was clear that this caused increased agitation he did not get them again. I also stopped the amino acid L-theanine and this seems to have helped too regarding less agitation so everything has an opposite effect. This too is the dog that get GI issues to the point of IBS when his cortisol is high and when it is normal his stool and GI status are fine.

I like the idea of stopping everything for the insomnia which right now is Melatonin and Trazadone and seeing what happens. I'm concerned that trying benadryl will also result in stimulation and agitation. Since removing the AM dose of Melatonin Duke seems even sleepier during the days. I'll have to talk with the IMS regarding trying a mild stimulant no idea if these are ever used on dogs. He loves coffee but I don't think it is safe beyond the taste he gets in the AM with us.

In humans there is a rare type of cushings called "cyclical cushings", bad insomnia is one of the clinical symptoms along with a pattern of regularly changing or cycling cortisol levels in a variety of patterns. It is usually caused by a pituitary tumor. There is no literature regarding this disease in dogs but that may be because the dogs can not describe their symptoms nor would anyone do the extensive hours of testing needed to document the cyclic pattern. That said Dukes symptoms and clinical presentation is so similar to that of people with this type of cushings, not that it would change anything regarding treatment. It would explain the insomnia however

[molly muffin]

That is interesting. I've never heard of cyclical cushings in dogs, but anything is possible.

Dr.Bruyette s the only one I see that even mentions cyclcal cushings in dogs as a possibility and he doesn't go into what it would mean.


he remaining nonclassic, less well-understood categories of Cushing’s syndrome etiologies include ectopic ACTH production by a tumor, meal- or food-induced Cushing’s disease, cyclical hyperadrenocorticism, occult hyperadrenocorticism and atypical hyperadrenocorticism, says Bruyette. http://veterinarymedicine.dvm360.com/meal-induced-hyperadrenocorticism-dogs-not-be-overlooked

[Duke's Mom]

Duke Update
After 3 weeks on maintenance Lysodren at 50% dosing (250 mg M-W-F), Duke started to show signs of Cushings again- poly x3 and hair (that was just starting to grown back) coming out in handfuls anytime we pet him:eek:, along with increasing insomnia and agitation ! I quickly scheduled an ACTH recheck (test #6 since 6.30.17) one week ahead of the planned time. No surprise it came back a bit high...
Pre 2.8
Post 6.7

So the IMS feels the 50% maintenance dose is not holding things in check and he has moved back into cushings with his adrenals regrowing too fast now. She is hesitant to move to 500 mg M-W-F (what his maintenance dose should be) and feels instead he needs the medication every other day. The current plan is to dose every other day alternating 250 mg and 500 mg as the dose given on the alternate days he gets the medications (dose equivalency of 375 mg QOD ~ 1312.5 mg/week). She hopes that more rapid dosing may slow the regrowth of the adrenals. Her concern is how fast he was induced and went too far and that he is just very sensitive. Recheck with Test #7 (slowly going broke) in 2 weeks.

Based on everything we both strongly suspect that Duke has a macroadenoma and possibly an ACTH secreting tumor- likely secreting in a cyclical nature. Brain imaging would only tell regarding tumor size but not if it is ACTH secreting; further neurological s/s that may emerge over time would also be strongly diagnostic. Knowing this would not change the plan of treatment and just add several additional thousand of $$ to the costs. We are over $6000 into this poor dogs care since starting this journey in late May 2017 with no end in sight to the continued testing as he is so difficult to stabilize :(.

The positives are his CC are 90% resolved, he has hair again- even if it is falling out, his GI issues are 99% resolved, he is happy and playful again.

[Carole Alexander]

I have followed your saga and efforts to treat Duke since May. I empathize with your struggle and know that this latest probable diagnosis must be incredibly frustrating and heartbreaking. You are an amazing mom to Duke and his inability to sleep at night, and thus your's, must feel like the proverbial bridge too far. I hope you can hold on to the good things and find hope and peace going forward.
Carole

[molly muffin]

Oh gosh, it certainly would have been better if he could have maintained on the lower maintenance dose. Let us know how he does on this alternative dosing regime.

How is his insomnia? Did you try the benadryl?

[Duke's Mom]

Thanks everyone for the support, suggestions and encouragement it truly helps. Somehow I thought once I figured out his diagnosis and he started treatment, he'd go on medication, quickly stabilize and there would just be periodic blood checks to be sure he was on the correct dosage. This has yet to happen but may someday I hope. I also never imagined I'd spend $6000 in medical care for a dog (no insurance) and still have a sick dog

Duke's insomnia continues with him waking between 3-4 AM every night, no change. He is having increasing late night agitation that starts around 9 PM and goes till 11-12 MN with him restless, barking at us, counter surfing, stealing anything he can get, pulling everything off the couches...while he is in this agitated state his pupils seem dilated- his eyes are darker (sounds weird I know), he is panting non-stop and when not looking for a way to be naughty, barking at us or pawing at me will pace. I try and settle him on the couch and gently pet him and he stands on me looking at me and just barks at me in my face, he will settle for a few moments then stand and bark at me. Sometimes chewing a bone or bullystick can refocus some of this nervous energy for about 15 minutes. We have started calling this "sun-downers" like you see in some people with dementia or brain injury where symptoms are worse at night-- that is Duke right now and was part of his behavior before he started treatment. Daytime there is almost none of this behavior or it come in very brief bursts 10-15 min and then he calms down, nighttime it can last for hours before bed :(. This symptom got dramatically better, resolved 90+% except insomnia when Duke started treatment the first week in July and while we were waiting for his adrenals to regrow. It's return matched the adrenal glands regrowth and now is back to an extreme level with him having too much cortisol in his body again.

Have not tried the Benadryl (yet), the IMS said it was fine to try but suspects it will not be strong enough and that he could also have a paradoxical reaction to this medication and be stimulated and more agitated after getting it. I was waiting for the weekend to try it and my husband to get back from a trip (so I can at least nap during the day if I'm up all night). So far everything we have tried other than the Trazodone + melatonin has been a disaster and made things worse.

I do wish he could talk and tell me what is wrong, if he is in pain, because I just have to guess.

[Joan2517]

Oh wow...what a nightmare for you. Not knowing what's wrong and not knowing what to do is the worst. I feel so bad for you, and poor Duke.

[Carole Alexander]

"Based on everything we both strongly suspect that Duke has a macroadenoma and possibly an ACTH secreting tumor- likely secreting in a cyclical nature. Brain imaging would only tell regarding tumor size but not if it is ACTH secreting; further neurological s/s that may emerge over time would also be strongly diagnostic. Knowing this would not change the plan of treatment and just add several additional thousand of $$ to the costs. We are over $6000 into this poor dogs care since starting this journey in late May 2017 with no end in sight to the continued testing as he is so difficult to stabilize."

I certainly understand your frustration about the cost of unsuccessful efforts to diagnose and treat Duke. If you and your IMS believe that Duke has a macro, I wonder why your IMS hasn't stopped the Lysodren? Is this treatment a 'just in case you might be wrong' approach?
Perhaps prednisone or a combination of similiar drugs would make Duke more comfortable, reduce swelling in his brain and offer some pallative relief. It doesn't sound as if you plan to treat if it is a macro and that is most understandable, but I'm pretty certain that continuing Lysodren won't help. My best to you and Duke going forward with this terrible disease.

[labblab]

I remain so sorry for all the challenges that keep facing you and Duke!! I wish there could be an easy answer. But I've just now taken the time once more to review your entire thread, and I'm reminded that poor Duke is an extremely complicated case, and obviously many question marks still remain.

To clarify, though, I'm a bit confused by you saying that the IMS is suspecting that Duke "may possibly have an ACTH-secreting" pituitary macrotumor. Since it is ACTH-secretion that results in the adrenal overproduction associated with pituitary Cushing's, is the vet back to questioning whether Duke's elevated cortisol is being caused by a pituitary tumor at all, as opposed to some other systemic stress on his body? Because in reviewing his entire history, he has had such a range of severe problems (and not all consistent with Cushing's) that it becomes difficult to determine what is the chicken vs. the egg. For instance, is the terrible insomnia the result of adrenal overproduction, or vice versa -- is there some other yet unknown cause for his cyclical disturbance that is stressing his entire endocrinological system and elevating his cortisol? Earlier on, I believe this very question was posed in conjunction with his ultrasound interpretation: is it Cushing's or instead stress-induced adrenal hypertrophy?

Knowing the expense associated with imaging of the head, I am usually not one to encourage it unless members feel as though invasive treatment of a pituitary tumor would be an option. I lost my own Cushpup to what I believe was an enlarging macrotumor, but I don't know for certain because I did not choose to proceed with imaging since, in our case, radiation treatment was not an option that I felt comfortable with. I know you've already spent a fortune and the additional cost of imaging may not be a possibility for you. But in Duke's case, there are so many "weirdnesses" about his presentation that if the cost was not an item, it would be nice to have a concrete answer as to whether or not a pituitary tumor is even present at all. But I repeat, I am surely not being flippant about the expense, because the cost barred me from committing to imaging with my own dog. But before heading further down the road of Cushing's treatment/testing, it would be so nice to have a concrete answer. If Duke doesn't actually have a pituitary tumor/Cushing's, then the diagnostic/treatment plan might indeed shift.

I suppose it's possible that the ACTH-secretion from a pituitary tumor could be pulsing. But would it be predictably cycling every single night? I dunno. It still seems to be that there may be a yet unknown factor at play. In the meantime, if Duke seems behaviorally better when his cortisol level is lower rather than higher, then I feel as though I understand the decision to maintain the cortisol-lowering medication. However, in Duke's situation, I must confess that I never truly understood the decision to abruptly shift from trilostane to Lysodren, since it is much easier to quickly tweak a trilostane dose than it is to alter the effects/dosing of a Lysodren protocol. Normally, I have no reason to not recommend Lysodren as a treatment alternative. But in Duke's complicated situation, I would have thought that the ability to alter dosing as quickly as possible, even on a daily basis, would have been a benefit.

So this is a lot of jabbering on my part, with not much to offer in terms of concrete support. I just want you to know, though, that I am so touched by your devotion to Duke under these incredibly trying circumstances. I just wish you guys could catch a break!!!!!!!!

Marianne

P.S. Just wanted to add that if a macrotumor is indeed present, then of course it may be putting increasing pressure on the hypothalamus which, in turn, I presume could lead to increasing disruption of the sleep cycle. In that event, the temporary improvement you saw earlier may not be duplicated regardless of cortisol level. :o

[molly muffin]

Marianne did a great job going over the immediate cortisol concerns and I don't know if there is anything I could possibly add to that.

i do want to send you some support though, as this is exhausting for all of you with the lack of sleep and the unknown of what to do now, or next or long term.

If it is a macro it is incredibly difficult to know what to do, especially considering excpense, however, if you go back through your ACTH result is that a level post that is better than the others as far as other symptoms are concerned?

It's not so easy to adjust up and down but maybe trying different strengths of maintenance dosing?

[Duke's Mom]

Latest update on Duke.... (long post sorry)

2 weeks after the increased maintenance dose of Lysodren with QOD dosing in hopes of slowing the adrenal gland regrowth, per the IMS, we did another ACTH stim. I knew based on symptoms the values would be higher still and was correct- Pre 3.6-- Post 9.7.

Dukes symptoms have been getting worse and worse again so this only confirmed what we already knew. It also confirmed that some of his non-typical symptoms that we have linked to increased cortisol levels in his body also seem to still correlate-- increased night time agitation, increased restlessness and irritability, resuming early signs of IBS with increased # of bowel movements-- up to 10/day and not as hard as they have been-- luckily not to the point of blood, and diarrhea, signs of GI discomfort with bowel movements. He is still poly x3, pants excessively and while his CC had almost completely cleared he is starting to form new ones now.

The IMS wanted to do a small bump again in his Lysodren and said she he may need to be re-induced if his values are up again in 2 weeks. We discussed the maintenance dosing options and agreed to a more substantial dose increase then she originally wanted to do (which was moving to 500 mg QOD), instead he is going to be dosed M-W-F with 1000 mg M- 500 mg W -1000 mg F--so 2500 mg/week. His original induction was with 1500 mg/day. The discussion dealt with wanting to get enough of a dose to slightly erode the adrenal and hopefully not have to re-induce. Retest in 2 weeks, or sooner if symptoms warrant.

I also asked the IMS if he might do better going back to Veteroyl which he was on for 1 month (May-June) before the first IMS stopped that medication. The current IMS said she feels Lysodren is a more powerful drug and given that he is so hard the stabilize on the Lysodren and showed little to no clinical symptom improvement in the month he was Veteroyl she said she did not think moving back to Veteroyl was the way to proceed. I asked if it was possible that he could have atypical cushings or the elevated cortisol was a stress reaction to something else going on in his body. She said that she does NOT think the cushings is from stress but rather that the cushings- elevated cortisol level is causing a stress response in his body - hair loss, skin lesions, GI upset, emotional instability/irritability, insomnia. She said there is noting clinically indicating atypical cushings and everything clearly supports a pituitary tumor. She did say that the only way to be 100% sure was with brain imaging. She also mentioned radiation therapy to reduce the tumor-- but this is not an option for us financially nor is it usually even a guaranteed long term cure (from what I have researched). She hopes if we can get him stabilized things will start to normalize again.

My sense is that Duke has her a bit stumped and likely is one of the more difficult Cushing's cases she has had to manage-- she is a younger specialist but is board certified in internal medicine and seems very smart and open. I find her often stating the standard or taught treatment protocols -- such as Lysodern maintenance dosing increases are done in 20% increments (yes we are doing way more than this with this dosage jump). I know she does not have years of experience with this disease to know when to step outside the standard protocol. My guess is even as an IMS some may never see and treat enough Cushing's dogs to know how and when to tweak a treatment protocol AND since the majority seem to stabilize with the standard approaches the need to do this becomes far and few.

So new Lysodren dose-- wait 2 weeks and retest

Recap of Lysodren Treatment
7/1/17 started induction 1500 mg /day-- dosed x 7 days-- no stim at ACTH test put on Dexamathasone rescue with gradual taper /as weeks progressed. ACTH stim every 2 weeks
8/11/17 ACTH stim 1.2/2.3--started maintenance at 50% dose Lydodern 250 mg M-W-F (750 mg wk) lower dose started since post was less than 3
8/30/17 ACTH stim 2.8/6.7-- maintenance dose increased to Lysodern QOD and alternating between giving 500 mg and 250 mg on days given. Dog showing all signs of Cushings again
9/13/17 ACTH stim 3.6/9.7-- maintenance dose increased to 1000 mg M, 500 mg W, 1000 mg F (2500 mg wk)

To date in vet, imaging(U/S Xray), lab and pharmacy charges we are $7589 in treatment cost , easily over $8k when I add in all the special vitamins and supplements. This is without having done an MRI or CT and all this charges have happened in a 4 month time span! I'm really starting to ask where is the quality of life for either of us???? I skipped a vacation this summer so I could work more, and I'm trying to pick up extra shifts even though I'm exhausted and have not slept more than 4 hours for over 6 months . I feel selfish but we are all miserable and will be digging out for some time financially trying to manage this...and still the dog is not stabilized, is not well and is crazy possessed at night :eek:

[Carole Alexander]

I truly empathize with you on multiple fronts: the expense is astronomical; the never ending efforts to accurately diagnose and treat are incredibly frustrating and the resultant lack of sleep must be maddening and exhausting. Skippy, who is a much older twelve, has experienced many illnesses and conditions over nearly a year since his diagnosis, peri anal adenoma, high blood pressure, possible lymphoma, Vetoryl overdose resulting in tremors, near seizures, pneumonia and finally a macroadenoma for which he was treated with radiation in July. He recently started Vetoryl again and his quality of life is still...maybe. As with Skippy, I wish I could say that there is a light at the end of the tunnel for Duke and you but, that's just not promised. What I do know is that we will all be here for you however you go forward. You are a wonderful mom to Duke and an informed and extraordinary advocate. You can vent your frustration here as long and as strong and we'll be here to listen. We'll support you as you go forward and only want what is best for you and Duke.

Carole

[DoxieMama]

No need to apologize for the long post. Sometimes that's the best thing you can do so share away!

I hope this additional increase will help... and soon.

Shana

[molly muffin]

I too hope that this new dose gives better control.

It's horrifying sometimes when you start to add up the cost long term for treatment, testing, etc. I never did add mine up as I just didn't want to know. :)
I figured I might have a heart attack if I knew and it would change nothing.

Big HUGS, you're doing great

[Tjhtygeverve]

I've just read your entire story. I hope all is well. I'm on yearc2 of tristolsne on my adorable warrior princess xena. Boston, jack Russell, & rat terrier, mishap. Gorgeous mix of terriers. The smartest(no training needed for complex instructions & actions) & the most loving animal I've ever known and probably will. I don't have thousands of dollars, just enough for regular ach testing, tristolsne, & creative eating initiatives for her as she gets "blah" 'ED out on same foods. Loves frozen bagged French cut green beans by the handfuls slightly ran under warm water until slightly chilled. Lives the crunch, flavor, & hydration. Vet recommended too.
Anyway, I hope all is well. I'm on year 2 of tristolsne and so far not bad. Getting bad with dementia actions, never comfortable, always barking, & sleepless nights & I work full time as a waiter at Disney in epcot in orlando. Just spent the entire weekend up 48 hours withvabout 2 hours of sleep xena had an outbreak of manic barking & inability to get comfortable. If I don't react to barking with food or water or go outside, she won't stop barking. It's happenedctwice in the pastv5 Friday-Saturday & she then sound asleep & calm on sunday morning (now).

I think it's dementia related as she's 14 & year 2 on tristolsne. I cannot afford above and beyond a huge levels quarterly. Otherwise, she's managing. She's my heart and soul & I hate to see her agitated for 48 hours maniacally barking, eating, drinking, inside, outside CONTINUALLY!
She looks at me with those big brown eyes for help & im stuck!
Anyway, everyone be strong and live your babies as long as they hold on and it's not an unhealthy treatment any longer. I'd NEVERCWANT MY BABY TO SUFFER FOR MY SELFUSHNESS!
I'm not implying anyone on here is, it's just I've done that before and the hindsight showed me via pics I should have been more assertive and let my previous pup relax forever!!!

I love my xena and will fight as long as it's right!!!