Jesse just diagnosed with Cushings

[frijole]

Re: Jesse just diagnosed with Cushings

Patti,

Trust me there are many many success stories and you are so organized and willing to research and learn that I just know Jesse will do just fine. Yes and No - Lysodren seems to work better for dogs with adrenal. It works equally effective as trilostane for pituitary. It is usually the vet's preference that has dictated lysodren vs trilostane selection. Lysodren has been on the market far longer. The toughest part is loading but it is totally manageable and we will hold your hand throughout so don't you worry a bit.

I remember you saying you walk Jesse alot and his hind legs have gotten weak. This is very common and the shaking/weakness does take some time to go away... seems like it was between 30 and 60 days for my dog. So it isn't overnight but it does start making them feel better pretty quickly.

We have so many wonderful stories on the other forum... but we promise to continue to share our experiences with you. My dog Haley has been on lysodren for 3 years now. No one even knows she has cushings. Shes just getting old is all.

Hugs
Kim

[Patricia ann Wh]

Re: Jesse just diagnosed with Cushings

Kim - thank you so much for that.
Big Hugs Right Back Atcha !!

[Lulusmom]

Re: Jesse just diagnosed with Cushings

Hey Patti,

Holy cow, that is outrageously expensive. I'm not sure that even if additional studies showed good results, that many vets would consider it as their first line of treatment as the vast majority of their patients could not afford it. Retinoic acid must be one of those things that is extracted from some rare plant that only sprouts on the river banks of the Amazon every five years but only for five minutes on a full moon and when all the stars are aligned. That would certainly explain the huge price tag.

I see you called Ackerman's office to make sure she was still treating dogs with Dogtor RX but did you ask if she did acth stimulation tests to determine if it actually reduces the cortisol? That is so key and something that is never divulged in the adds for these types of supplements. I did however do a bit of research on Dogtor RX and the main ingredient is extract of fertilized eggs. It looks like Mount Sinai Hospital in Canada did some human clinical trials that showed some significant decrease in depression. Not sure that has anything to do with adrenal hormones but I was thinking of myself actually. It also appears that the only real adverse effect noted was an allergy to egg whites. I've provided a link for that study below.

http://clinicaltrials.gov/ct2/show/NCT00446719

When you say that Jesse seems to improve with Dogtor RX, what symptoms are improved and which ones haven't? I'm asking because quite frankly, if my dog were very senior like Jesse and I found a benign alternative treatment that greatly improved his quality of life by significantly reducing the symptoms common in cushing's, I would definitely think twice before deciding to treat with Lysodren or Trilostane.

I had no idea that Dr. Mark Peterson was Dechra's spokesperson and man, you would certainly think that he would have prescribed it to more than a few dogs. Dr. Edward Feldman, another world reknown expert, said that he thinks Trilostane is an excellent treatment; however, he still prefers Lysodren because he knows the drug, is comfortable with it and has prescribed it to his patients for over 35 years. I wonder if Dr. Peterson doesn't share his feelings??

Hang in there, Patti. This is the worst phase of the disease....out there twisting in the wind, trying to make decisions that you can't really make until you know what you are dealing with so aaarrrggghhh!

Glynda

[ventilate]

Re: Jesse just diagnosed with Cushings

I can see Glenda is as concerned as I about using treatments other than the tried and proven medications. My concern with using these meds is that it reduces the symptoms but not the cotisol level. Be sure you mention to the vet that you are using these supplements as it can potentially complicate loading, if you are using lysodren or just watching for the signs of the dog having to much trilostane. When we begin treatment we watch for lethargy, not eating , a decrease in water consumption just to name a few to tell us the levels are getting close to getting to low. The supplements you are giving you say have reduced the symptoms of cushings so it will be very difficult to tell when you dog has had enough or to much of the cushings medications, the levels may be dangerously low before any signs or symptoms show.
I am glad you have found something to keep your dog comfortable but please believe if is to good to be true it usually is. Sitting here with you waiting to hear from Dr Peterson....
Sharon

[jrepac]

Re: Jesse just diagnosed with Cushings

I'm still wrapping my head around the "fertilized eggs" thing...how does that help, I have to wonder? I had looked at Dogtor RX before as well. Yet, there are success stories...like folks who have used supraglan, cushex, etc., etc.

I'll add that to the list with dandelions, daisies, arsenic, sulphur and happy thoughts!

Relieving symptoms is not all that bad, quite honestly. If the cortisol is not sky-high, the symptoms are a big part of the battle. As many know, higher than normal cortisol actually helps with other problems like arthritis...

I just wish there was an ez test to monitor cortisol levels daily (like a urine test strip). At least we would know where things stand, particularly if one is not using lyso or trilo, the proven cortisol lowering agents. It is frustrating when the pup appears to be doing well, but other signs (or tests other than ACTH or Low Dose Dex) may suggest cortisol is high...but you don't know exactly how high it is. Don't want to have to do ACTH or LDDS tests all the time...they are too stressful and expensive.

[Patricia ann Wh]

Re: Jesse just diagnosed with Cushings

Glynda,

That is the first time I have laughed in a long time.!!!!
Thank you so much. That was really funny.
I'm sure Peterson is a lyso man too. Its understandable. We'll see tomorrow.
Yes, you're right about the supplements changing the dosage, thats important.
That's why I stopped in the first place (because of the blood work)
No - the supplements do not stop the disease, I think they help - well - they do help - but I would not tell anyone to rely only on supplements

I'm hanging in by a tiny little thread Glynda, I don't know how you've done it - you are a terrific mom. And you are a terrific spokesperson for cush puppies.
You are a blessing . Thank you, Patti and Jesse

[frijole]

Re: Jesse just diagnosed with Cushings

Yeah Patti, Glynda is "special".

But we love her anyway.
Kim

[Lulusmom]

Re: Jesse just diagnosed with Cushings

I'm hanging in by a tiny little thread Glynda, I don't know how you've done it - you are a terrific mom. And you are a terrific spokesperson for cush puppies.

Like Kim said, I'm special. Seriously, Patti, we've all been hanging from that same tiny little thread in the beginning. I still remember how totally terrified I was when Lulu was diagnosed. I was addled and had knots in my stomach for weeks and bigger than usual bags under my eyes from crying. Once we got passed all the testing, the sticker shock and the lysodren loading, it was like a huge weight was lifted from my shoulders; however, I wasn't totally comfortable with things until I was able to wrap my arms around the disease and the treatment. My arms were never long enough until I found these fine folks who helped me stretch them a bit and gather up a lot more knowledge. It has been a humbling experience to say the least.

We're all here now so you and mom don't have to do this alone. Hugs to all three of yous guys and keep the updates coming.

Glynda

[Patricia ann Wh]

Re: Jesse just diagnosed with Cushings

This is from cslabs.co.uk AT HOME TESTING

Urine Cortisol:Creatinine Ratio & Dexamethasone Suppression Test
When Cushing's disease is strongly suspected, this is a test that can be used when the dog is easily stressed as all the sampling is done at home by the owner and samples sent on to the lab together.

1. Day 1, collect a first morning urine sample.

2. Mix the urine and half fill Sample Tube 1, place in the fridge until dispatch.

3. Day 2, collect a first morning urine sample.

4. Mix the urine and half fill Sample Tube 2, place in the fridge until dispatch.

5. Immediately after urine collection, note the time and give the dog the required number of Dexamethasone tablets (dose = 0.1mg/kg).

6. 8 hours later give the dog the 2nd set of Dexamethasone tablets.

7. 16 hours later give the dog the 3rd set of Dexamethasone tablets.

8. Day 3, collect a first morning urine sample.

9. Mix the urine and half fill Sample Tube 3, place in the fridge until dispatch.

10. Send all 3 urine samples straight to the laboratory for UCCR test.

Interpretation
HAC is suspected if the UCCR is greater than 30 x 10-6 in two consecutive morning urine samples.

If the UCCR in the 3rd urine sample is depressed by 50% of the mean UCCR of the first two samples, PDH is the likely diagnosis.

If the suppression is less than 50%, an endogenous ACTH is suggested to confirm an adrenal tumour.

Normal dogs will have a UCCR less than 10 x 10-6. PDH or ADH dogs usually have a UCCR greater than 30 x 10-6.

Canine Hypoadrenocorticism - Addision's Disease
Addision's Disease - Primary hypoadrenocorticism results when more than 90% of both adrenal cortices are destroyed and this leads to a clinical deficiency of all adrenal hormones.

The ACTH stimulation test will provide confirmation of Addision's. It is also useful to measure the Sodium/Potassium ratio.

Interpretation
The basal cortisol will be low with little or no response after ACTH. A classic Addision's ACTH response test would be Pre cortisol = <20 nmol/L, Post cortisol = <20 nmol/L.

Handbook Index

Introduction
Canine Thyroid
Feline Thyroid
Equine Thyroid
Canine Adrenal

Hyperadrenocorticism
ACTH Stim Test
Low Dose Dex Test
High Dose Dex Test
Endogenous ACTH
Cortisol/Creat Ratio
Addisons
Feline Adrenal
Equine Adrenal
Adrenal Misc
Reproduction Male
Reproduction Female
Pregnancy
Gastrointestinal
Other tests
Therapeutics
Reference ranges
Research assays
Clinical trial assays
References
Sample required

[Patricia ann Wh]

Re: Jesse just diagnosed with Cushings

WOW - I just called my new vet that rushed Jesses ultrasound and acth stim test this week to talk to him - and - guess what - he's gone till next Thursday. !!!
He never said a word!!
(If you've read my saga you'll remember my last vet did the exact same thing, he went on vacation and told me the night before he left too.)
The plan was for him to talk to Dr. Peterson today!!!!
I just called Peterson's and his secretary was shocked too.
He saids Peterson was going to call my vet and go over the tests with him and decide what to do today.
Is this some kind of sign.
Roadblock after roadblock.

[frijole]

Re: Jesse just diagnosed with Cushings

Luckily that secretary already knows what you have been thru... I'd try to get the results straight from the expert and cut out the guy who bolted on vacation. That is unfair. You can't be expected to wait another week. I am confident you will get them to share the results. You are a great advocate for your dog Patti. hang in there and let us know what happens.

Kim

[Patricia ann Wh]

Re: Jesse just diagnosed with Cushings

I picked this up yesterday at the office of my new vet that flew the coop till next Thursday

Corisol Pre 5.9
Cortisol 2 26.7

Some other vet up there told me that the adrenals were both very slightly enlarged but that was indicitive of pituitary.

Peterson's secretary said that Peterson did look at Jesse's test but would call the first vet (that also flew the coop for a week without telling me)on Monday or Tuesday.

By the way, I wish you could have all been there - the stand in vet told me to go ahead with trilostane - not to ever use lysodern - he said they don't call it ODD for nothing - he said the DD stands for DEAD DOGS, in fact every dog he's treated with lysodern has died. !! (That is exactly what he told me)
I could start with 120 a day if I wanted - I mentiond davis' protocol and he said well - if I want - start at 60 a day, or 30 a day, he said to go with whatever I felt more comfortable with - he would leave 30's 60's and 120's all at the desk - take whatever you want he said.

Are you beginning to see why I called Peterson, not that he is panning out either now. The vet thats returning from his vacation on Monday has never treated a dog with trilostane and he also has lost 3 dogs to lysodern.
Can you see where my fear comes from now.
Remember, this all started (or didn't start) with the expert specialist endo. in west hartford that told me to NOT treat cushings!! the drugs would kill him before the disease he said, reading the forum (whherever that went) is the only thing that kept me searching, and watching my dog - lets just say getting sadder. God - I LOVE MY JESSE BOY.

[frijole]

Re: Jesse just diagnosed with Cushings

Patti,

I can totally understand your frustration as those comments about all of their dogs dying from lysodren is crazy - unless of course they are not following protocol and are over or under dosing all of them. But you are armed with knowledge.

The results you shared are from the acth test. The first number really doesn't matter. The 2nd number means the cortisol is elevated and could be cushings. You mentioned the adrenals were slightly enlarged (both). I believe that does indicate pituitary but I am hoping to get confirmation from others. Did they ever do the 8 hr test (LDDS)?

So what is the next step? Wait for your vet to return or did you leave with the trilo?

Hug Jesse for me!
Kim

[Patricia ann Wh]

Re: Jesse just diagnosed with Cushings

Hi Kim, Yes we did the 8 hour.

here is what I'm looking at.

Pre dex 7.6
post 4 hour 8.4
Post 8 hour 8.8

Does that mean anything to you??

Thank you , Thank You, for responding.
Did I tell you 2 ultrasounds and both vets didn't see a problems with adrenals
(adrenal cushings).

[Roxee'sDad]

Re: Jesse just diagnosed with Cushings

Hi Patti,
wow what a vet!!!!! Pretty much giving you the okay to use whatever dosage you want

As you know there are plenty of Lyso and Trilo success stories here

some do better on one than the other. I personally don't use Lyso but although I do see some improvements, I am contemplating depending on Roxee's next stim which I am also considering a UTK panel. I will be discussing future treatment soon with some of the other more experienced people here.

I caution you to not jump the gun here. As you know Cushings is not an immediate death sentance and it takes time to do it's damage. Be absolutely sure of the dx and the proper treatment with protocol followed correctly.

The stand in vet, well, I would mention your conversation to your regular vet as he is totally out place saying that and if all his dogs died from using lyso, I wouldn't let him check my pups heartbeat

Hang in there, I'm sure the others will chime in to help you sort this out. Your doing a fine job of learning and questioning everything. Knowledge is power (to save your pups life) and keep your sanity.

Wishing you and Jesse all the best. (Don't rush into anything)
John (Roxee's Dad)