Ok, I just got off the phone with my vet.  I am not sure what to think.  I would love it if Dr. Kellon could take a look at these results AND at what my vet is recommending. I like my vet but he has nowhere near the experience with PPID that Dr. Kellon does!

Monte is on 2mg of Prascend, given once daily.  Our vet is cautious about raising the dose, and in fact wants to lower the dose. His reasoning is that there are only so many mg of pergolide that you can give and once it stops working well there is nothing more to be done.  He would like us to lower Monte's dose to 1.5 mg daily. I asked him about the super low Insulin and Glucose numbers. His thinking is that pergolide/Prascend CAN also lower those levels and that APF can also lower those levels. Monte is on 6cc of APF daily. He would like us to keep him at that dose. We will recheck blood levels in 2 months.

I am concerned.  If Monte is already at PPID levels of ACTH, then aren't we putting him at risk for negative effects of Cushings by reducing his levels? Is there any truth to the idea that lowering his Prascend levels but keeping his APF the same can lower his ACTH levels over time? Our vet also stated that since Cushings is terminal we are just prolonging the inevitable at this point and at some point we will no longer be able to manage it as the Prascend will no longer be effective and there isn't anything else.

Monte's main visible symptoms of PPID are coarse and thin hair coat, occasional swollen sheath, reoccurring thrush and abscesses, soft tissue issues with hip, and lack of strength in his jaw. His weight is good. Monte is 28.

HELP?!

ACTH   63 pg/mL
Glucose 61 mg/dL
Insulin   9   uU/mL


--
-Chris
May, 2019  Big Bear Lake, California
https://ecir.groups.io/g/CaseHistory/files/Chris%20and%20Monte 
https://ecir.groups.io/g/CaseHistory/album?id=95892  

Hi Chris
I'm not Dr Kellon, but I've been a member of this group for over a decade and speaking from what I have learned here . . .  with all due respect to your vet, he's wrong. There are so many horses on this group who are happy and living long, productive (whether ridden or retired) lives on much greater doses of pergolide than 2mg. My mare, for example, is on 4mg of pergolide and I will continue to raise her dose should her symptoms and blood test suggest the need. 
Our well-controlled PPID horses do of course die eventually--but they usually die WITH Cushings, not FROM it. PPID is a progressive disease; it does not have to be "terminal". 
Please ask your vet to provide proof for the assertion that pergolide eventually stops working (spoiler alert, there is none). 

If Monte were mine, and his ACTH was at 63 in what should be the lowest time of the year, plus he has clear symptoms, I would not hesitate for one millisecond to increase his dose, APF or no APF. Also, do you have the lab reference ranges? I'm wondering if the glucose is a bit low--which can possibly indicate mishandling/degradation of the sample. 

Sorry if I sound a bit militant, but it's something I feel strongly about as I have seen horses genuinely die from uncontrolled Cushings due to owners following misguided veterinary advice, and I want to try to help prevent that ever happening again. 
--
Maxine and Indy (PPID) and Dangles (PPID)

Canberra, Australia 2010
ECIR Primary Response

https://ecir.groups.io/g/CaseHistory/files/Maxine%20and%20Indy%20and%20Dangles 
https://ecir.groups.io/g/CaseHistory/album?id=933

 

As I've said before, the only correct dose of pergolide is the one that controls the ACTH - whether it's 1 mg or 10 mg, or more.  In the rare instance where pergolide is not working you can go to cabergoline (injection every 7 to 10 days) but again the dose is what corrects ACTH.

Your vet may be thinking that because APF is an adaptogen it will control ACTH. All adaptogens can modulate the normal ACTH - cortisol axis, some by lowering ACTH, some by substituting for ACTH but PPID is NOT a normal situation and doesn't respond in the same way as the normal axis. Adaptogens don't take months to work. They begin to have measurable effects virtually immediately.

The most difficult PPID horses to control are those that have advanced disease before treatment is started. Monte was showing weight and shedding issues as long ago as 2016, started pergolide in 2019 but with some long periods of also getting Chastetree berry which could block pergolide effects. My opinion would be to get after him aggressively with the pergolide dose - and have the blood sent to Cornell and processed as they describe. I don't trust your results.
--
Eleanor in PA

www.drkellon.com 
EC Owner 2001

Thank you all very much.   Now to figure out how to help my vet to the same conclusions.  I don't want to alienate him as he's the only one who will still make farm calls. (and he will advise me by phone in emergencies!) But I can't/won't jeopardize Monte's health either!
--
-Chris
May, 2019  Big Bear Lake, California
https://ecir.groups.io/g/CaseHistory/files/Chris%20and%20Monte 
https://ecir.groups.io/g/CaseHistory/album?id=95892  

Some people have gotten around their vet's resistance by offering to sign a release form stating the vet will not be held responsible for any consequences of increasing the dose. Others might respond better to knowing the recommended ceiling for Prascend in the UK is 5 mg, not the 2 mg here, and the 2 mg was probably to placate the FDA's paranoia about pergolide.  There are also reports in the literature of horses getting a 5 mg dose.
--
Eleanor in PA

www.drkellon.com 
EC Owner 2001

Thank you. I've also been reading through the files and finding ones that I think might help convince him its the right thing to do.
--
-Chris
May, 2019  Big Bear Lake, California
https://ecir.groups.io/g/CaseHistory/files/Chris%20and%20Monte 
https://ecir.groups.io/g/CaseHistory/album?id=95892  

Hi Chris,
I had Logo on a very high dose of pergolide, such that If I posted it you might think I’d misplaced the decimal point.  He had been responding to an increase in dose for years and I decided that when the economics were favorable, I would switch to cabergoline.  Before that, it became obvious that the dose increases had stopped working so I made the switch then.  While I was giving it more frequently than recommended, I felt as though I could see the years melt off of him, even at 31.  He succumbed to a colic within months so my experiment was not long lived.  My feeling with these older guys is that it’s worth being a little adventurous in their care, within reason, of course.  If you increase his pergolide and find that it’s not beneficial, you can return to the earlier dose.  It’s weird because when Logo was on cabergoline and looking fantastic, his ACTH was higher than it had ever been while on pergolide.  Just a reminder that ACTH isn’t the only hormone involved, just the only one we have access to testing.
-- 

If you need me to dig something up you think would be helpful just let me know.

It's important to note we don't just make this stuff up. The vast majority of what we recommend is directly based on published research. There are also modifications based on our two decades of experience and we make every effort to differentiate between the two.

If your vet has only ever used 1 or 2 mg of pergolide and found that over time it stopped working that's not entirely incorrect but it's because the pituitary growth has continued, gotten larger and the dopaminergic neurons keep dying off so the horse needs a higher dose over time. It's not really that it stopped working - just wasn't a high enough dose. As mentioned already, there are also rare situations where pergolide does not work well and in that case you can go to cabergoline. Bottom line though, as others have said, we never have horses dying of PPID.
--
Eleanor in PA

www.drkellon.com 
EC Owner 2001

Update:  I wrote our vet an email just laying out the reasoning for my desire to increase his dose and cited a couple of the resources in the files. I was careful to let him know that we trust him and depend on him but that it's also up to us as the caretakers to become the experts on this as much as possible. He just called me. It was a very good phone call. He stated that his concern is not that he is concerned about refractory issues, but more that he is concerned about the possibility of side affects from higher doses of pergolide in older horses- ie lameness, diarrhea, inappetance, lethargy, and so on.

So we have agreed to increase Monte to 3mg Prascend daily and retest in 2-3 months. We will keep a good eye on him during this time for any potential side affects. We aren't expecting any but we'll keep watch.

Dr. Kellon- we would both like to ask you for clarification. You mentioned that you did not think Monte's PPID had been well controlled prior to this. His ACTH levels in Sept of 2019 were 77 pg/mL  (PPID indicative at over 100), in April 2021 they were 45 (PPID indicative over 50), and then last week they were 63 (PPID indicative over 50). What are my vet and I missing in 2019 and 2021? We  had been thinking that he was relatively well controlled until the most recent blood test. We'd both like to make sure we are reading and interpreting things correctly!

Thank  you everyone for your help!
--
-Chris
May, 2019  Big Bear Lake, California
https://ecir.groups.io/g/CaseHistory/files/Chris%20and%20Monte 
https://ecir.groups.io/g/CaseHistory/album?id=95892  

Thank you. So although every lab sends their own normal levels should we not pay any attention to them? Should we not be including lab normals on our Case Histories either? Definitely according to these levels Monte's PPID isn't controlled.
--
-Chris
May, 2019  Big Bear Lake, California
https://ecir.groups.io/g/CaseHistory/files/Chris%20and%20Monte 
https://ecir.groups.io/g/CaseHistory/album?id=95892  

Hi Chris
Good on you for tackling this difficult conversation with your vet, and kudos to your vet for listening. Im so glad you’ve been able to find a way forward.

I just wanted to add that even if you take your lab normals as appropriate, your case history shows that Monte has had continued symptoms—so based on that, a trial of more pergolide would be a logical step. The numbers are only part of the picture. It sure would be handy if blood test results and symptoms correlated neatly in every horse, but unfortunately that’s not the case. 

--
Maxine and Indy (PPID) and Dangles (PPID)

Canberra, Australia 2010
ECIR Primary Response

https://ecir.groups.io/g/CaseHistory/files/Maxine%20and%20Indy%20and%20Dangles 
https://ecir.groups.io/g/CaseHistory/album?id=933

 

Chris ,

I think you got the answer to your question already but just in case, and long story short, the "normals" given are much too high IMO.

Labs either use established ranges or make their own by testing "normal" horses which in this case would be horses without classical signs of PPID. If they tested a lot of older horses that looked normal they could easily have included horses that actually did have it.

--
Eleanor in PA

www.drkellon.com 
EC Owner 2001