Stormy - need advice on perg. dose, please


Teri
 

Stormy (26yo mini -x mare. PPID/severe IR) continues to stump and confound me.  Needing advice.

Had ACTH drawn on Friday 8/8 because her appetite kept getting worse (her best/most reliable indicator) in spite of being on 20 mg Pergolide (compounded caps).   I was afraid to increase her dose any more w/o labs to confirm.  I was right...ACTH was 52.9!    Appetite got even worse over the weekend, so I am sure it has gone even higher since then!  (She does best when ACTH is under 20.)

I gave her an extra 1mg. yesterday and added another 1mg today.  ( For new people...I think because her dose is so high, I can increase her dose this quickly w/o her experiencing the veil. )  So she got 22mgs today! YIKES!   Her appetite had already improved this evening....not great, but better.      

After a real struggle, her ACTH was 17.3 on 14mgs perg last Nov.  Instead of going down in the spring, ACTH was 30.3 in May....still on 14mgs.   I have been chasing it ever since.   Like I said, once we got to 20, I got really nervous, did more labs and here I am...in very uncharted waters ...wanting to make sure I am doing the right thing.    Can I safely continue to go by her loss or increase in appetite to judge her increase in dose through the rise?  I would be shocked if she stabilizes this early in the season.  Is there an upper limit on the perg dose?  

I just now quickly updated her CH to include her labs and perg doses from this year.  There have been a few other minor changes (like adding Phyto-quench) but I really don't think they would affect her ACTH. 

She did show signs of anhydrosis/overheating earlier this summer.   She has been fine since I body clipped her, but she still does not seem to tolerate being out in the sun for very long.   I body clipped her for the 2nd time this year about a week ago.  Her feet continue to be tender in spite of great help/advice form Linda.  Trim is the best it has been in ages.  She is currently wearing Eponas.  

Thanks in advance for your help!

Teri and Stormy

IN 2012

groups.yahoo.com/neo/groups/ECHistory5/files/Teri%20Riley/Teri%20Riley%20-%20Indiana


Nancy C
 

Hi TeriIt absolutely can get scary. You seem to have a good handle on what you need to do though. I could not read your whole CH for some reason and got cut off in 2013 somewhere.Want to make sure you buying only 30 days of pergolide at a time and store in in the door of the fridge for maximum potency.  Also have a look at the pergolide dbase that LeeAnne hs put together.http://tinyurl.com/m6syzt4While much larger than Stormy, the first three listed are on higher doses.
You folks with these higher doses, addressing the symptoms and not seeing gross side effects, are blazing a trail for sure.  I've not seen any report of an upper limit for pergolide but would need Dr Kellon to comment any further. The fact that symptoms are abating as you increase the dose speaks volumes to me. Hope those in your territory will speak to their experiences as well. Hang in there. Keep breathing.Nancy C in NHECIR Moderator 2003Learn the facts about IR, PPID, equine nutrition, exercise and the foot.www.ECIRhorse.orgCheck out the FACTS on Facebookhttps://www.facebook.com/ECIRGroupSupport the ECIR Group Inc., the nonprofit arm of the ECIR GroupEquine Cushing's and Insulin Resistance Group Inc.

 

---In EquineCushings@..., <teririley@...> wrote :

Stormy (26yo mini -x mare. PPID/severe IR) continues to stump and confound me.  Needing advice.

She did show signs of anhydrosis/overheating earlier this summer.   She has been fine since I body clipped her, but she still does not seem to tolerate being out in the sun for very long.   I body clipped her for the 2nd time this year about a week ago.  Her feet continue to be tender in spite of great help/advice form Linda.  Trim is the best it has been in ages.  She is currently wearing Eponas.  

Thanks in advance for your help!

Teri and Stormy

IN 2012

groups.yahoo.com/neo/groups/ECHistory5/files/Teri%20Riley/Teri%20Riley%20-%20Indiana

 


Nancy C
 

Teri - I hope you can read my message.gotta love, love, love NEO.Nancy C in NHECIR Moderator 2003Learn the facts about IR, PPID, equine nutrition, exercise and the foot.www.ECIRhorse.orgCheck out the FACTS on Facebookhttps://www.facebook.com/ECIRGroupSupport the ECIR Group Inc., the nonprofit arm of the ECIR GroupEquine Cushing's and Insulin Resistance Group Inc.

 


Tina Martin
 

Hi Teri,
I know exactly how you feel!  My horse, Rio, is currently on 24mg per day.  He is 16 yrs old and also PPID plus IR and has been battling this for 4 years.  I think we are #2 on the database now (not a good place to be) and it helps to know that there is indeed a horse who gets a higher dose :)
Like you, I watch my horse like a hawk constantly checking for changes in behavior etc. but he seems to be doing fine on this high dose.  I fact, he is comfortable barefoot right now and I can ride him for over an hour on trails (walk/trot/canter).  Earlier in the spring and summert I rode him barefoot over gravel without problems but now he needs boots in the front over gravel.  So, I can tell the seasonal rise is affecting him.  Instead of upping his dose I have changed the way I split his dose.  I used to give 12mg in the morning and 12mg in the evening but have changed it to 16mg in AM and 8mg in PM to try to get a bigger "bang" in the morning when the cortisol levels are naturally higher.  I will recheck his ACTH and if necessary increase his dose.  I see potential side effects as the smaller evil.  After all, what's the alternative?  Founder!
The only side effect I have noticed so far is a twitching or cramping of the right side of his face.  It happens every so often in the mornings about an hour or so after giving the pergolide.  I'm pretty sure it's a side effect because he has never done it before.  But it doesn't seem to bother him.  If it happens while we ride he just keeps going.
I wish BI would do some research on side effects with higher dosages of Prascend instead of just stating that it should be dosed according to weight (I believe the insert says the highest dose is 4mg).
Rio is still relatively young and since PPID is progressive I'm scared of where he might end up.  Also, it's pretty costly right now at 24mg/day but I consider myself lucky to have a vet who doesn't mind prescribing this.
I'm just thankful for every day and every ride and hope he will be around for a while longer!
Hang in there and check the database (it'll make you feel better!) 
Tina
Atlanta, May 2011
---In EquineCushings@..., <teririley@...> wrote :

Stormy (26yo mini -x mare. PPID/severe IR) continues to stump and confound me.  Needing advice.

Had ACTH drawn on Friday 8/8 because her appetite kept getting worse (her best/most reliable indicator) in spite of being on 20 mg Pergolide (compounded caps).   I was afraid to increase her dose any more w/o labs to confirm.  I was right...ACTH was 52.9!    Appetite got even worse over the weekend, so I am sure it has gone even higher since then!  (She does best when ACTH is under 20.)

I gave her an extra 1mg. yesterday and added another 1mg today.  ( For new people...I think because her dose is so high, I can increase her dose this quickly w/o her experiencing the veil. )  So she got 22mgs today! YIKES!   Her appetite had already improved this evening....not great, but better.      

After a real struggle, her ACTH was 17.3 on 14mgs perg last Nov.  Instead of going down in the spring, ACTH was 30.3 in May....still on 14mgs.   I have been chasing it ever since.   Like I said, once we got to 20, I got really nervous, did more labs and here I am...in very uncharted waters ...wanting to make sure I am doing the right thing.    Can I safely continue to go by her loss or increase in appetite to judge her increase in dose through the rise?  I would be shocked if she stabilizes this early in the season.  Is there an upper limit on the perg dose?  

I just now quickly updated her CH to include her labs and perg doses from this year.  There have been a few other minor changes (like adding Phyto-quench) but I really don't think they would affect her ACTH. 

She did show signs of anhydrosis/overheating earlier this summer.   She has been fine since I body clipped her, but she still does not seem to tolerate being out in the sun for very long.   I body clipped her for the 2nd time this year about a week ago.  Her feet continue to be tender in spite of great help/advice form Linda.  Trim is the best it has been in ages.  She is currently wearing Eponas.  

Thanks in advance for your help!

Teri and Stormy

IN 2012

groups.yahoo.com/neo/groups/ECHistory5/files/Teri%20Riley/Teri%20Riley%20-%20Indiana


Bonnie
 

Tina and Teri, I am interested to hear your thoughts. My Welsh pony Lad is high on the list of the pergolide database also. In fact I need to update his CH . In July his ACTH came back at 20.6. I was surprised as he had no symptoms and was previously controlled at 12 mg of pergolide.
The vet advised me to raise his dose to 24 mg. As he had not shown a reaction to increments of 3 mg last year, the dose was raised the same way. There have been no side effects at all.
Like Rio, he is relatively young: only 15. And like you, I wonder what the future holds. I am so grateful for a vet who prescribes compounded pergolide. She hopes we can reduce the dose when the seasonal rise is over.
 I plan to retest in late September. Moderators and Dr. Kellon: does that sound like a good  time to test?
Bonnie Ivey, Ontario 12/08
  ECHistory6

 


Nancy C
 

Hi BonnieDid you mean you raised your dose to 14 mg and not 24?Nancy C in NHECIR Moderator 2003Learn the facts about IR, PPID, equine nutrition, exercise and the foot.www.ECIRhorse.orgCheck out the FACTS on Facebookhttps://www.facebook.com/ECIRGroupSupport the ECIR Group Inc., the nonprofit arm of the ECIR GroupEquine Cushing's and Insulin Resistance Group Inc.

 

---In EquineCushings@..., <bon.ivey@...> wrote :
 In July his ACTH came back at 20.6. I was surprised as he had no symptoms and was previously controlled at 12 mg of pergolide.
The vet advised me to raise his dose to 24 mg.
  ECHistory6

 


Lavinia Fiscaletti
 

Hi Bonnie,

As I recall, your units of measure are different than Cornell's, with your lab's normal range being 2-10. Is that correct?

Lavinia, Dante, George Too and Peanut

Jan 05, RI

EC Support Team


Bonnie
 

Yes, Lavinia, Guelph's range is 2-10 pmol/L.
Bonnie Ivey, Ontario 12/08


Bonnie
 

Nancy, in January 2014 Lad's ACTH was 5 pmol/L on 12 mg pergolide. In July it was 20.6. The University of Guelph uses a range of 2-10 as its reference interval.
Since Lad's July test was double the top number of the reference, the vet decided to double the medication, to 24 mg.
Bonnie Ivey, Ontario, 12/08


ThePitchforkPrincess@...
 

Hi Teri,
So sorry I thought I had sent this yesterday but clearly got side tracked!
My mare Dawn is on a high dose too (okay if pergolide was horse racing Dawn would be Secretariat) She has been on pergolide for 9.5 years.  I see no side effects.
I do see symptoms of PPID though and her ACTH has never tested into normal.  This is not a potency problem - everything suggested for storage on the group has been done with no change in ACTH tests.  Personally I think it is because she was always out of normals and the tumour has been kept under some control, but not enough to stop symptoms or tumour growth and that is why ever increasing dosages are needed.  
Of course, keep in mind, I am no expert but until we get more data on this we won't know this for sure.  (If anyone reading this can contribute information by adding or updating their Pergolide Dosage Database entry... nudge, nudge, wink, wink, hint, hint ;-) 
I took Dr.K's PPID course, made the commitment to follow Dr. Kellon's "the correct dosage is the one that control the ACTH", buried my vets in printouts of ECIR file documents, talked well enough that they thought I truly understood what I was saying, and of course, the real key, gave them a signed waiver of responsibility that also promised to get the ACTH tests to verify dosage changes.  So now Dawn gets as much as possible and I hope to finally get her within normals by the next ACTH test in a few weeks.  I don't have to argue with my vet, as the ACTH tests show she is not controlled.  
It isn't perfect but the bottom line is no one doubts that Dawn would have foundered and been put down long ago without the "high" dosages of pergolide.  
At this point Teri, I think you know what Misty needs despite there being no answers about side effects.  All I know for sure Dawn has shown nothing  but PPID symptoms and nothing regarding "side effects" except the veil in the early stages.  Dawn to can handle major increases of pergolide now - upped her 3mg with no tapering.  Waited a few weeks and did it again.  The bottom line is that without the pergolide dosage increasing to "high" dosages, she'd not have lived to see 26 never mind 31.    

-LeeAnne & Dawn, Newmarket, Ont. PPID & IR 03/2004

Case History

Photos

All Season Muzzle Photos

Hoof Pics


Teri
 

LeeAnn, Tina, Nancy and Bonnie,
First of all thank you all for your thoughtful replies...they were appreciated very much.   It's taken me a while to post a reply.  I've been trying to wrap my mind around this...kinda like when I first found this group.  Plus I wanted to see how Stormy was reacting to her higher doses first.   And, I knew this would be long... sorry! 
Nancy...You asked if I got a 30 days supply of compounded caps and if I store them in the door of the frig.   Yes, I do.    I was surprised and pleased when my vet asked me the same thing!   He IS listening!  YAY! He also asked what is the highest dose on the list.  I plan to send him a copy of the data base.   He said he couldn't believe it when Stormy hit 8 mgs...much less 20!  (But like you said, Lee Ann..he has the lab results to prove that she needs it) When I asked him to come do the ACTH, I told him I was sure by her symptoms that her ACTH was too high.   When he got the results (52,9 Cornell) he said "You were right!"  He couldn't believe it was that high on 20mgs perg. 
LeeAnn and Tina...It was so good to hear from both of you.  Knowing that you've been through the same thing really helps.   I kept hearing Dr. Kellon's advice running through my head...that the correct dose is whatever controls the ACTH...but when Stormy hit 20mgs I started to get scared!    Plus, she's a tiny pony!  (I did review the data base...and LeeAnn...your CH on Dawn is a work of art!  Kudos!!!  I didn't get around to reading Rio's)
Bonnie...sounds like you and Lad are headed for the top of the list, too!   
So here's where we're at.  As of today, I've increased her to 27mgs.   I've been increasing by 1mg about every other day.  I increase...better...next day ..not....and repeat.   After reading your post about increasing Dawn by 3 or even 5 mgs at a time, LeeAnn...I started thinking.  (Dangerous! ha!)   My math skills are horrible so this was very painful for me.  :-)   And the more knowledgeable people out there...please correct me if this thinking or my math is wrong.    If your horse is on 1mg perg.  (which a lot of horses are on at the beginning) and you increase by 1 mg (also common) you are essentially DOUBLING their dose.  So we divide the dose by 1/4 and increase .25 mgs every 3 days.    So...for those at high doses....say 20mgs...if you increased by 1/4 the total amount...that would be 5 mgs.  Right?    Stormy has gotten to the point that inc. by 1 mg, barely makes a difference in her symptoms.    So tonight I bumped it up by 3 mgs.   Gulp! :-)     I still feel like I am chasing the ACTH by adding 1mg at a time...and will never get ahead of the rise unless I bump the dose up more.  I felt the same way last fall when we went from 6.5 mgs in July to 14 mgs in Nov.   I followed my gut feeling as I increased her dose and her ACTH was 17.3 in Nov...her best ever!   (At that point the 1mg  did make a noticeable difference.)    Gosh, I just realized... that means I DID double her dose last fall!    Sure hope I don't need to do that this year!  YIKES! 
I too am very thankful to have a vet who listens to me and to the advice of this group.   He has gone along with the increase in dose with very little fuss...I think because Stormy's lab results prove that she needs it.
I guess I will just keep listening to what Stormy tells me she needs, like I've done before, and then test again if I'm uncertain?   I think I am pretty in tune with her at this point.    Am I on the right track?
Thanks again!
Teri and Stormy
IN 2012
I just tried to add the link to Stormy's CH and Yahoo tells me ECHistory5 is closed to NEW case histories, but her's is NOT new.    ?????   Probably good ole neo again!    I just remembered...I didn't delete her old CH when I updated it...could that be it?  

 


Bonnie
 

Hi Teri,
You seem to be doing very well at monitoring signs. The test results have conformed your observations. Yes, a vet who is willing to prescribe higher dose as needed is a treasure.
LeeAnne helped me out greatly when I panicked over the thought of Lad's new 24 mg prescription. She also taught me an easy method of gradually moving the dose upward. She sent me some empty capsules. I would take a pergolide capsule, puncture the end carefully with a darning needle, and gently, carefully squeeze some of the powder into an opened empty capsule. In this way I was able to make up 1/4, 1/2, 3/4 dose capsules to add to the 12 mg capsules I already had. By the time I got Lad up to two full 12 mg capsules, the new 24 mg capsules had arrived. This was easier for me than dissolving the powder in water and syringing it in.

Perhaps you are wondering, as I am, whether to retest ACTH in September or October. I would like to hear from the experts on this question.

Bonnie Ivey, Ontario 12/08


Lavinia Fiscaletti
 

Hi Teri,

Yes, it's probably a Neo thing on the link - although it did attach to your reply so who knows. When you have a moment, it would be helpful if you deleted the older history, as long as all the info in it is also in the updated version.


I'm with you on trying to wrap my head around a difficult case. One of my boys is currently on 16mg pergolide, which controlled his ACTH perfectly well during the rise last year but then his ACTH just started climbing again. At last check in April 2014, it was 225pg/ml (Cornell) and probably still climbing. That doesn't make sense as that is not a PPID driven rise. That was the same scenario as a year previous, when he had been on 12mg pergolide with solidly controlled ACTH during the rise but then lost it during the late winter and early spring.


His symptoms are an enlarged crest, more pu/pd and increased smegma production. His insulin and glucose are on the rise although diet is tight. But it doesn't appear to affect his attitude or soundness - yet. I'm terrified that laminitis is lurking around the corner.


I agree that as the base dose of pergolide gets higher, increases can be made more quickly and with larger increments, although my boy has never had an issue with pergolide veil. When I first tested him, his ACTH was 1088pg/ml. He went from no pergolide to 9mg in 6 weeks.


It's wonderful when you have a vet who will work with you and who trusts that you know your horse well enough to see changes that are red flags for trouble brewing. I am also lucky to have a vet that is willing to work with me.


You sound like you are extremely in tune with what Stormy needs. Obviously, frequent testing is the Gold Standard for monitoring status but that isn't always possible due to logistics and/or finances. We all do the best we can. Knowing your animal well is the best thing that you can do and is a legitimate substitute to use when balancing the costs and logistics with the need to provide top notch care.


Lavinia, DAnte, George Too and Peanut

Jan 05, RI

EC Support Team







Teri
 



So here's the latest on Stormy.   As of today (Tues. 8/26) I have increased her pergolide to 42 mgs!!!  That is double the dose she was getting exactly 2 weeks ago.  The bigger problem is that I still feel like I'm riding a runaway train!  I seem to be just barely keeping up with the rise.  I'm really worried if there is an end in sight!  Last year I had to keep increasing her dose through November...and then her ACTH started going up in May.  

I have 8, 3 and 1 mg caps on hand right now.  It's a daily 'brain strain' trying to figure out how much she needs today and at what time of day.   Did she eat better or worse in the morning, mid-day or evening?  I'm expecting a new order of 12, 6 and 3 mg. caps.   In the few days it's taking to get my order, I  realize that I'm gonna need more.  I was hoping she'd max out or at least level off for a while at around 30mgs.  That didn't happen! 
Today she got 10 mgs a.m. and 32 mgs p.m.   Her appetite has been the worst at mid day, which tells me the evening dose isn't lasting.  Right?    She is eating better in general...but still not great. I have to coax her to eat the last few bites. (Bucket feed)  As I write this, I'm wondering if I should bump her up again tomorrow.   Sigh..... 

Besides worrying about Stormy and trying to figure out the proper dose, there's the money.  This last pergolide order was $267 (Thriving Pets) ...and that won't even last a month.  Plus, I discovered some white spots on my Haflinger mare, Kelsey's eye, which turned out to be Squamous Cell Carcinoma.   She had surgery last week at Rood and Riddle (3 hrs away) to remove the growths.  So my emotions and my pocketbook are both a mess!  

As always, any thoughts, suggestions, ideas, etc. would be most appreciated.  

Teri, Stormy and Kelsey
Indy 2012
ECHistory5

 




Carol
 

Has anyone giving these large doses of pergolide tried switching to Prascend?  Just curious, I know every horse is different, but Rossi went from 357 to 70 on 1 mg of Prascend.  Is there any evidence that Prascend works at a much lower dose than pergolide?

Carol and Rossi in Maryland 2003


ThePitchforkPrincess@...
 

Hi Carol,
My vet has asked a few times about switching to Prascend.  I've told him no, as, a) It would be hard to ensure my mare was getting 33 tablets into her and b) the cost of say even a dollar per tablet, $33 dollars a day would be impossible.  Prascend doesn't seem to control any better than any other pergolide?  
I've heard that all pergolide comes from one maybe two sources in China.  Prascends pergolide can't be any "better" than compounded.  Perhaps their packaging might make it last any longer but I don't see any any advantage they could possibly have with the raw material being shipped box containers over oceans .  I doubt the containers are heated or refrigerated (depending on what area of the globe they are sailing through).  This isn't based on any real knowledge, just on my own thoughts.  
However the pergolide dosage database provides stats about control, Prascend and control:

27% equines are controlled (73):
58 on compounded (58)
14 on Prascend (14)
1 on Permax (1)

43 equines are not controlled:
32 on compounded,
8 on Prascend 
2 on Permax 
1 on Parkotil

Rats.  I missed the percentage for the number not controlled!  Hence the reason I don't give advice in the group!  LOL 

Nancy might, off the top of her head ,have a better guess if Prascend really is more potent than compounded as she has posted all kinds of Prascend user's experiences in the files.   For me, unless they can put so much "fix" in a single mg of pergolide that it only takes a percentage of Dawn's current dose,  it won't matter as their cost for the amount of 1mg Prascend tablets needed to control my mare's ACTH is just out of the ball park. 

-LeeAnne & Dawn, Newmarket, Ont. PPID & IR 03/2004

Case History:  http://tinyurl.com/oneltv6

Photos:  http://tinyurl.com/6h64yh

All Season Muzzle Photos:  http://tinyurl.com/55c52m

Hoof Pics: http://tinyurl.com/6qc79x6

More Hoof Pics & Xrays: http://tinyurl.com/6shyrxr

 





Eleanor Kellon, VMD
 

First, just a general comment that does not specifically refer to this case.  We  have seen over the years that pergolide dose does have to be steadily increased.  This could be due to the horse's body metabolizing it more efficiently over time.  It could also be due to the pituitary growth continuing to expand because the dosage or dosage frequency is not sufficient to suppress it.  We don't know.

With extremely high doses and rapidly escalating doses, there may be another factor.  Pergolide mimics the effects of dopamine.  When dopamine or any other neurotransmitter or hormone is present in very high levels, the receptors for it are downregulated, meaning the receptors are withdrawn from the cell surface so the hormone, neurotransmitter or drug will not produce an effect because it can't bind to the cell.  This is known to happen with pergolide:

Chronic levodopa or pergolide administration induc... [Neurology. 1984] - PubMed - NCBI

 

Is there a specific dose where this happens, when high pergolide levels start to cause receptors to go internally so that it no longer has the desired effect?  We don't know, but there probably is.


Another possibility that can never be forgotten is that the compounded drug was compromised and is not as potent as it should be.  You may be handling the product correctly but it could be the tail end of a shipment to the compounder that expires while you have, or could have been damaged in transport by things like high temperatures in trucks during transport.


Stormy is a complicated case.  While I don't doubt at all that poor appetite can be one of her symptoms of poor control, there are other possible causes and it's really not a reliable indicator of need for more pergolide.  Even in November 2013 when her ACTH was in the teens she still had issues with appetite, foot comfort and eye drainage.


The only thing that has made a clear and dramatic improvement in her appetite is adding yeast and for hoof comfort only NSAIDs or nerve blocks.


Because of all the unknowns, I don't know if you can really sort out what is going on here but this is what I would try:


- Repeat ACTH on the current dose

- Get fresh pergolide from another pharmacy

- If no change in ACTH or higher, drop the dose to 13.5 to 14 mg and repeat ACTH in 3 weeks

- Continue other support of ultra low ESC/starch diet and meticulous hoof trimming


I would also strongly suggest you do a complete chemistry blood panel which will show up any issues with organ function.  Not so much concerned about the pergolide for this as for the long course of Previcox and also her age.  This should really be done yearly at least.


Eleanor in PA

www.drkellon.com

EC Co-owner

Feb 2001


Nancy C
 


Hi Teri

Keep breathing.  I know its easer said than done at time like these

Some things to think about:

Are there any symptoms besides appetite that make you believe she  is still uncontrolled?

Appetite can be driven by other things and I just want to cover the bases:  teeth, deworming schedule, heat and humidity, bowl gone sour in same type of weather, Pain, change of hay, feed, other…..

Unless there is new info, there is not a lot known  about the half life of pergolide. What is discussed is six hours but info on what that actually means was not available as of these messages:

https://groups.yahoo.com/neo/groups/EquineCushings/conversations/messages/149110

https://groups.yahoo.com/neo/groups/EquineCushings/conversations/messages/149034

https://groups.yahoo.com/neo/groups/EquineCushings/conversations/messages/135054

A lot of members have found that the initial correct dose needs to be found. IOW, that ONE dose, am or pm, that delivers the required amount.  A second or sometimes even a third smaller amount is used by some to carry the horse through the rest of the day.

So if it is in fact ACTH out of control, she may need more than the 20 mg at pm.  Or she may need it in the am instead of pm.  I think if she were here I'd work with my vet to bring the large dose up even by lowering the smaller to see if that worked, vs adding more pergolide into the equation.

Some members have found adding a third small dose has helped, ie they moved some of the AM dose to  lunch time to see if that helps get through the day eating as she used to.

Also suggest jherb, (if not still on Previcox), canadian ginseng or APF.

Hang in there, Teri.

Hi Carol - As LeeAnne has said there are at least 20 reports on the use of pergolide and Prascend in the files.  More that I need to file but have not the time right now. BI recommends no more than 3 mg.  5 mg of Prascend did not control my gelding.  Others have reported similar situations and have switched back to compound. At the 70 you have achieved going into seasonal rise, I would not call my gelding controlled and I would be concerned he would be at very high risk for laminitis this winter.



Nancy C in NH
ECIR Moderator 2003
Learn the facts about IR, PPID, equine nutrition, exercise and the foot.
www.ECIRhorse.org
Check out the FACTS on Facebook
https://www.facebook.com/ECIRGroup
Support the ECIR Group Inc., the nonprofit arm of the ECIR Group
http://ecirhorse.org/index.php/equine-cushing-s-and-insulin-resistance-group-inc



---In EquineCushings@..., <teririley@...> wrote :



So here's the latest on Stormy.   As of today (Tues. 8/26) I have increased her pergolide to 42 mgs!!!  That is double the dose she was getting exactly 2 weeks ago.  The bigger problem is that I still feel like I'm riding a runaway train!  I seem to be just barely keeping up with the rise.  I'm really worried if there is an end in sight!  Last year I had to keep increasing her dose through November...and then her ACTH started going up in May.  



Teri, Stormy and Kelsey
Indy 2012
ECHistory5

 




Nancy C
 

Hey Teri

I default all my comments to Dr Kellon!!

But keep breathing!

Nancy C in NH
ECIR Moderator 2003
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---In EquineCushings@..., <threecatfarm@...> wrote :


Hi Teri

Keep breathing.  I know its easer said than done at time like these

Some things to think about:

Are there any symptoms besides appetite that make you believe she  is still uncontrolled?

Appetite can be driven by other things and I just want to cover the bases:  teeth, deworming schedule, heat and humidity, bowl gone sour in same type of weather, Pain, change of hay, feed, other…..

Teri, Stormy and Kelsey
Indy 2012
ECHistory5

 




Teri
 

Dr. Kellon,

***I had a talk with my vet today about all of this.  I am very pleased to report that the two of you seem to be on the same page.    Maybe even the same wave length! :-)


Another possibility that can never be forgotten is that the compounded drug was compromised and is not as potent as it should be.  You may be handling the product correctly but it could be the tail end of a shipment to the compounder that expires while you have, or could have been damaged in transport by things like high temperatures in trucks during transport. 

 

***This is so ironic!  My vet said he'd just had a long conversation with the pharmacist at Thriving Pets.   They called him to question the high amount of pergolide that he prescribed.  He explained what had been going on with Stormy and that we had ACTH results to show she needed the higher doses.  They said maybe I was ordering too many at a time...meaning several months worth.  Also questioned if I was storing properly.  He told the pharmacist that if he'd check their records he'd see that I only order a 30 day's supply each time and that I store the caps in the door of the frig.   Then he turned the tables and asked if they were using fresh pergolide. The pharmacist started backpeddling! ;-)    He assured my vet that the pergolide was fresh.  I guess there's no way to know for sure???   I have also worried about the temps during transport.  Can't do much about that, but I try to order at the first of the week so that it isn't sitting in a warehouse somewhere over the weekend.  It usually takes 2 days to get from CO to IN.  I also try to get the pkg out of my mailbox asap on the day it arrives.  


Stormy is a complicated case.  While I don't doubt at all that poor appetite can be one of her symptoms of poor control, there are other possible causes and it's really not a reliable indicator of need for more pergolide.  Even in November 2013 when her ACTH was in the teens she still had issues with appetite, foot comfort and eye drainage.


****I understand and appreciate what you're saying.  I apologize for getting lazy with my record keeping. This info wasn't in her history.   Stormy seemed to level off during the late winter/early spring and her appetite was pretty good.  Then late April/Early May her appetite seemed to be getting worse.  We checked her  ACTH on 5/16...it was 30.3.  Still normal, but up from 17.3 in Nov.   We increased her pergolide trying to get ACTH back in the mid normal range....appetite was immediately better. So I started paying closer attention to her appetite.  Appetite worse, increase pergolide, appetite better. That pattern continued all summer. She was on 14mgs of perg. when tested in May.   By Aug., she was on 20mgs and her appetite was getting worse and worse every day...getting to the point of totally refusing her bucket feed.  My gut said I needed to increase, but I was afraid to add more w/o testing.   Her ACTH was 52.9 on Aug. 15.   So, same pattern...but the increase only lasted a day or two.  One mg. didn't even seem to phase her, so I started increasing by 2, 3, 4 mgs at a time.  So in only 2 weeks we were up to 40 mgs!  I whole heartedly agree that at this point relying on her appetite, or lack of it, is risky.  It made me nervous enough when we were at 20mgs not to mention now!   YIKES!!!


Because of all the unknowns, I don't know if you can really sort out what is going on here but this is what I would try:


- Repeat ACTH on the current dose

I would also strongly suggest you do a complete chemistry blood panel which will show up any issues with organ function.  Not so much concerned about the pergolide for this as for the long course of Previcox and also her age.  This should really be done yearly at least.


***My vet is coming out tomorrow to draw blood for ACTH, CBC and chem panel.   It will be kept in the freezer all weekend and shipped out on Tues. (since Mon is a holiday).


-Get fresh pergolide from another pharmacy


***I just received a new shipment of perg. yesterday.... same pharmacy.  I spent $267 for these meds., so I would hate to toss and order more.   They did assure my vet that the perg was fresh...but I guess there's no way to know for sure.  I will order from a different pharmacy if you still think it's necessary


- If no change in ACTH or higher, drop the dose to 13.5 to 14 mg and repeat ACTH in 3 weeks

- Continue other support of ultra low ESC/starch diet and meticulous hoof trimming


***Will do.  


Thank you so much!!!

Teri and Stormy

Indy 2012