# High ACTH levels - please share yours



## autumn7 (25 May 2012)

Old mare's first ever blood test result  came back yesterday with an ACTH reading of 397.
Now I realise that is high and that normal is 29 or lower, but just how outrageously high is it in the grand scheme of things? 
Have read endlessly on the web and can't seem to find any comparable readings about just how high levels go to.
Collecting a few Prascend tabs from vet this pm to tide me over until online prescription comes through. Want to get her started on treatment ASAP.


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## muff747 (25 May 2012)

O-my-word  I have heard of levels getting up high but not many _that_ high.  Especially at this time of year when i should be almost at it's lowest.  I would join the EC/IR yahoo group, they will have files and members history for you to compare levels with.
Have you managed to avoid laminitis?  Late Autumn is usually when you see the highest levels.
Liiphook have some good info here http://www.liphookequinehosp.co.uk/documents/PituitaryParsIntermediaDysfunction.pdf
EC/IR Group here http://pets.groups.yahoo.com/group/EquineCushings/

O my boy's highest before I got it under control was only 104!


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## nativepony (25 May 2012)

My NF mare was diagnosed two years ago and her levels after the first blood test came back at 193, at one point they got down to 28 but at her last blood test were 49, she's on 3mg of Prascend at the moment - was advised by vet to up to 4mg but have decided to add vitex agnus castus as well as the 3mg and closely monitor her.  It's a horrible thing and I've spent many a sleepless night worrying about her, feel free to pm me if you want to chat


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## muff747 (25 May 2012)

autumn7 said:



			Collecting a few Prascend tabs from vet this pm to tide me over until online prescription comes through. Want to get her started on treatment ASAP.
		
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You might find she goes off her feed if you start on 1 tablet.  If she's already off feeds, the group advise tapering, i.e. start with a quarter of a tablet for four days then half for four days then three quarters.
Some don't get the side effects though,
good luck


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## Oberon (25 May 2012)

autumn7 said:



			Old mare's first ever blood test result  came back yesterday with an ACTH reading of 397.
Now I realise that is high and that normal is 29 or lower, but just how outrageously high is it in the grand scheme of things? 
Have read endlessly on the web and can't seem to find any comparable readings about just how high levels go to.
Collecting a few Prascend tabs from vet this pm to tide me over until online prescription comes through. Want to get her started on treatment ASAP.
		
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My old boy's result came back at over 200 a month ago.

He's looked fab all winter and then, this spring suddenly looked dreadful. It was just his coat - scurfy, patchy and dull.

I took advantage of the free testing voucher and had the vet test him. The vet asked why I wanted him testing first and I couldn't really explain what I felt.

Vet just figured I was testing to use the voucher.

When the result came back the next day, the vet apologised for doubting me and said he really didn't expect that level!

The point I am making is that some horses hide a high result well 

He has been on 1mg Prascend a day since then and has now started to look better. His ginger hair started to come back black and he almost changed colour 
	
	
		
		
	


	




. But he is going ginger again now 

I was mindful of the 'Pergolide Veil' where they become depressed and low in appetite after going on the meds - but he's been fine and happy.

I went onto the Yahoo group with my tail between my legs when I first got the result - but they weren't too worried and just said he will have had cushings for a while and not to worry now he was on the treatment.

I am happy that he had the diet and hoof care in place beforehand. I've been feeding herbs  balanced minerals for a while now and I suspect it's what has kept him healthy this long.


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## LeneHorse (25 May 2012)

I also used the free voucher and my mare's test came back with a score of 55, normal for this time of year is under 30. She has been on prascend for 2 weeks and it has not affected her appetite. She gets re-tested in two weeks so I'll let you know how she gets on. 
I have been trying to join the Yahoo group but am having all sorts of problems - I thought i had a log-in and password but when I tried it the next day it said there was a problem. I tried to do it again and had the same problem so have given up trying 
Regarding the test results a friend who is a pharmacist says the cushings test can throw up false positives - has anyone else heard this?


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## Oberon (25 May 2012)

LeneHorse said:



			I also used the free voucher and my mare's test came back with a score of 55, normal for this time of year is under 30. She has been on prascend for 2 weeks and it has not affected her appetite. She gets re-tested in two weeks so I'll let you know how she gets on. 
I have been trying to join the Yahoo group but am having all sorts of problems - I thought i had a log-in and password but when I tried it the next day it said there was a problem. I tried to do it again and had the same problem so have given up trying 
Regarding the test results a friend who is a pharmacist says the cushings test can throw up false positives - has anyone else heard this?
		
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And you think you have the right to post on here with a measly 55 
	
	
		
		
	


	








.

You should still be able to read the articles on the Yahoo group, even with no login.

I believe you can get false positives if you test in the autumn as the levels are higher naturally then anyway. But I'm still new to it all too


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## muff747 (25 May 2012)

Oberon said:



			And you think you have the right to post on here with a measly 55 
	
	
		
		
	


	








.

You should still be able to read the articles on the Yahoo group, even with no login.
No you do have to join to be able to read the information and even the members posts.

I believe you can get false positives if you test in the autumn as the levels are higher naturally then anyway. But I'm still new to it all too 

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Liphook Equine Labs seasonally adjust their results to give accurate results nowadays.  But there are strict guidelines on the handling and processing of the blood and if this is not adhered to, there can be false results.
 And lenehorse - Yahoo sometimes have glitches on their site so I would try again. There is a mountain of information on there gathered mostlly from the over 10,000 members.


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## autumn7 (26 May 2012)

Thank you all, good to know of further sources for info and have now joined the Yahoo group. Sure it'll be much used, espec. in these early days.

muff747 I did read about the gradual intro advantages so gave her half last night and will stick to this for a couple more days, then up it to 3/4 etc. Better safe than sorry.

Feels good to know her treatment has started though as seems her count was sky high.

Clipped her fully in two stages yesterday and today as her coat is so incredibly dense, but not curly. She must feel better for it in this latest heatwave. Other than her lingering thick coat and often appearing depressed/lethargic (which I'd taken as her increasing age - she's 26) I'd say there's no further signs of ill health. Just goes to show!

Lenehorse, please do report back once next tested, I'm really interested on how everyone's horses are responding in the first instance. Mine is to be retested in a month from now. There's GOT to be a drop - surely.


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## muff747 (27 May 2012)

autumn7 said:



			. Mine is to be retested in a month from now. There's GOT to be a drop - surely.
		
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Sounds like you got away with it thank goodness.  Lots of owners don't realise their equines have cushings because you don't always get the classic visible signs.  My boy looks fit as a fiddle at age 24 and apart from losing weight in the early spring, he still doesn't look like a typical PPID horse.
In the first twelve months, it took a few increases in Pergolide dose and retests to get the level down to normal but I have heard some go from very high levels down to normal on just 1mg of Pergolide.


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## 0ldmare (29 May 2012)

Oh dear I can beat you all!

When my mare was first diagnosed her level was something like 750  can't remember the exact number but mid 700's anyway. After going on Prascend 1mg her level dropped to 148 so the dose was upped to 1.5 and she is now at a much healthier 48. Ok not perfect but heaps better and vet is happy not to increase it. 

Her summer coat has come through really well and she's back to being glossy and shiny.


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## tango'smum (29 May 2012)

my boys was 245 last october. he went on prascend 1 a day, retested its now 26 or 29 i cant remember....so hes doing ok...


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## Paula Hughes (11 October 2012)

My 20 year old pony had his ACTH levels tested at the beginning of August as I happened to mention to the vet on a routine visit that his coat was fluffier than normal.   Over the years we have always had to clip him in August and then roughly every 2/3 weeks and several times a year he has medium to high worm counts but apart from that there are no obvious signs of cushings.  His ACTH levels came back as 515 and the vet recommended he go on a herbal supplement, Cush X Gold, and be retested in 8 weeks.  His levels are now in the low 300's and he will be retested in another 8 weeks which will hopefully show a further improvement.


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## mtj (11 October 2012)

Just been through the false positive scenario.  Had my 17 yr old tested whilst he was at the vets having a lameness assessment.  I was aware joint injection was on the cards.

Result came back at over 140.  Totally unexpected.  Bloods re taken at home and the result was 29.  

At least in my horse's case, stress played a major part in the initial result.


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## SizzlerB (12 October 2012)

My mare was diagnosed last August.  First reading in 40's.  Re tests always between 18 and 22.  Had her tested last week and it's gone up to 78 :-( So 1/2 tablet has gone up to 1 a day. 

My vet said her results were extremely high, but having read others on this post I feel for you all.

x


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## ihatework (12 October 2012)

I have a 17yo 7/8th TB.
He's being living out 24/7, unrugged and just on hay for the last couple of years. 
Looks fab in his coat in the summer (it was very thick and yak like in the winter), but despite getting fed very little he always carries too much weight.

Been musing for a while about having him tested, bit the bullet and he was done this spring and came out with a level of 320!!!!!

He was retired for feet issues, and although feild sound barefoot, he is noticeably far more comfortable on his feet now he has started prascend - so it has probably been sub-laminitic for quite some while, we were lucky not to get a full blown episode.


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## Nanolol (14 October 2012)

Simon's: 81.9 pmol/L. Reference range 2-10. Tested 9/30/2012.  Just started pergolide a few days ago-currently on 25 mg, will be upped to 50 mg in 2 weeks.


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## Sunshine8 (17 October 2012)

Results back today and my mare was over 200. 
Started on prescription today. 
How long until you started to see visible improvements?


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## Nanolol (17 October 2012)

My vet said to expect improvements no earlier than 6 weeks on treatment, but some could take longer or shorter.


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## mailme1918 (21 May 2013)

hi my 22 years old mare has just been tested and its at 50.. 
I took advantage of the free test if you look over at new horse and rider under 22 year old mare to buy or not to buy you can follow my story of how I came to get angel
anyway the vet wants to start angel on half a tablet a day but im debating wheather to hold off for a few reasons really. 
1. he took the sample from angel while she was heavily sedated after her throwing a paddy when having the gag in for dental treatment
2. not showing many signs yes shes sway back and has a pot belly and is underweight but she has been neglected and unfed ive had her a month and have totally changed her feeds and care could this not mess with the test?
3. shes shredding her coat fine infact I could make hundrreds of wigs out of the amount of hair I groom out daily. 
4. angel was very depressed but she had been left in a field ignored unruuged unfed un wormed she had nothing .. she seems a lot happier now she has me visiting her 3 times a day feeding her.
her mucsles are wasted away but again no work been done
she has got a bit of fatty tissues in her neck/mane 
doesnot drink a lot is not curly coat is dull and dry im guessing due to neglect again.
in 4 weeks of me having her the difference is great shes gaining weight only another 25kg to go no stiffness thanks to the suppliments and regular walking with me. 
im in 2 minds wheather to hold of any medication for a month or 2 then retest
does this test have to be taken at any particular time of day, would the sedation effect the outcome. would her change in life style alter this 
im ringing the vet tomorrow with a list of these questions but any advice would be great.


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## paddy555 (21 May 2013)

mailme1918 said:



			hi my 22 years old mare has just been tested and its at 50.. 

anyway the vet wants to start angel on half a tablet a day but im debating wheather to hold off for a few reasons really. 
1. he took the sample from angel while she was heavily sedated after her throwing a paddy when having the gag in for dental treatment
		
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I cannot believe anyone would test under those conditions. Why didn't your vet test first before she was stressed? I discussed testing my very nervous little mare with the vet and the vet decided she would be too stressed just from taking the blood to get an accurate reading. I was also told by the vet that the sample shouldn't be taken whilst the horse was sedated. 

I think you need to restest under better conditions if you are going to rely on the test results.


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## HashRouge (21 May 2013)

Mine was 40 something, so not especially compared to some! But she had horrible trouble with abscesses, we just couldn't get rid of them. My vet said sometimes horses can have ACTH levels that are only just "high" as opposed to "normal", but can have very noticeable symptoms. My mare has now been abscess free for nearly five months *touch wood*. Also, the difference in the hoof growth she has had since taking the Prascend is really really noticeable - whereas before she has horrible growth rings, she now has a gorgeous bit of smooth, new hoof growing in.


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## paulineh (21 May 2013)

I can beat all of you, in September last year my New Forest mare (24 yrs old) was blood tested. The only signs she ever showed was a couple of foot abesses in 12 years.She has always been a subdued little girl so nothing new, always got rid of her coat each year. Her results came back >1200 retested in October and it had come down to 238. She had never been on the drug just the Hilton Herbs CushX. I will have her retested sometime in June to see what the results are now.

I was advised by my vet to put her on the Cushx and not the drug,unless she got worse. 

I changed her diet a bit just removing the excess sugars.


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## Silverfire (21 May 2013)

20 yr old horse tested end March 91.4. Only symptom he has is weight loss. Started prascend yesterday.


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## mailme1918 (21 May 2013)

I spoke to the vet again yoday apparently the sedation nor the fact that shed just had an hours dental work and a health check would effect the results and said he thinks starting her on the meds sooner rather than later is better. . But I just feel there's something not right going straight to meds .. the results where 54.8.  
Im being told of horsey friends to hold off and manage her diet for laminitis but vet said the meds will make her feel better and help her emmune system and lessen the likelihood of laminitis.


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## LucyPriory (22 May 2013)

mailme1918 said:



			I spoke to the vet again yoday apparently the sedation nor the fact that shed just had an hours dental work and a health check would effect the results and said he thinks starting her on the meds sooner rather than later is better. . But I just feel there's something not right going straight to meds .. the results where 54.8.  
Im being told of horsey friends to hold off and manage her diet for laminitis but vet said the meds will make her feel better and help her emmune system and lessen the likelihood of laminitis.
		
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You are right if your horse is PPID, just managing for lami isn't enough. See
http://ecirhorse.org/index.php/cushing-s-disease/physiology-of-ppid-cushing-s-disease


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## paddy555 (22 May 2013)

mailme1918 said:



			I spoke to the vet again yoday apparently the sedation nor the fact that shed just had an hours dental work and a health check would effect the results and said he thinks starting her on the meds sooner rather than later is better. . But I just feel there's something not right going straight to meds .. the results where 54.8.  
Im being told of horsey friends to hold off and manage her diet for laminitis but vet said the meds will make her feel better and help her emmune system and lessen the likelihood of laminitis.
		
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if you google "horse, stress, ACTH" you will find plenty to suggest stress is to be avoided. 
Seems to me your vet could be covering his own back. However, from my own experience of using prascend, I think he is right that the meds will make her feel better and certainly help the immune system. 
Even if your horse is only suspected to be cushings it is very iimportant to get the management systems into place.


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## boobear (22 May 2013)

My girls highest was 237 and we got it down to 20 but unfortunately she didnt make it....had her flu and tet jab done and it rocketed it to the point of founder, so I would beg with anyone to carefully consider having their horse's injections done especially if their horse is having a laminitic episode


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## LucyPriory (22 May 2013)

boobear said:



			My girls highest was 237 and we got it down to 20 but unfortunately she didnt make it....had her flu and tet jab done and it rocketed it to the point of founder, so I would beg with anyone to carefully consider having their horse's injections done especially if their horse is having a laminitic episode
		
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So sorry for you loss.


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## splashgirl45 (22 May 2013)

mine was diagnosed in august 2011, acth level 172....have had her tested quite a few times and she is now on 2 1/2 prascend daily and latest test in feb this year showed level of 45 and liphook feel that level is acceptable although ideally it should be under 29.   i never seem to be able to relax about her condition and am paranoid about laminitis....have been lucky so far....


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## Nanolol (29 May 2013)

Last test was April 2nd and after 6-7 months on pergolide, Simon's ACTH is 13 pmol/L. Still not quite "normal" but as he isn't showing any more symptoms, going to stick with his current dose of 50 mg once daily. He's also shedded out his winter coat quite well, and with the strange Canadian winter/spring that we've been experiencing, he was quite smart to hold onto his fluff. The vet was in about about 2-3 weeks ago and there was HAIL. Some of the clipped horses had to have their winter rugs put on


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## Spector (29 May 2013)

My 27 year old Shetland didn't really have a proper summer coat last year and seemed a bit quiet and not nearly as naughty as usual so I had him tested in October 2012.He tested positive with a reading of 312.He was prescribed 1/2 tablet of Prascend daily and within a month was cheerful(and naughty) again.He's moulting quite well,but I expect that he will need clipping.


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## The Lone Piper (25 July 2014)

Interesting that you say stress can play a major part in a high result. My pony's reading has come back at 1112. He hasn't had laminitis for a lot of years and couldn't understand why his reading could be so high and he not have permanent lami. He had just had his teeth done and had had to be sedated to get them done before his bloods were taken. Could this have affected his reading?


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## Micky (26 July 2014)

Stress can play a big role in giving  a false reading as can sedation, ....
Seasonal rise from august onwards testing labs do take into account this fact, it is the better time to have bloods taken for a more accurate reading.
More info if anyone wants to know on the laminitis site ( info on PPID (cushings) and EMS/IR)

My lads reading wasnt anything like you guys but it has increased over the year hes had PPID, he's at 42.5 now so will probably have to upp pills by half a tablet come september


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## Gloi (26 July 2014)

The Lone Piper said:



			Interesting that you say stress can play a major part in a high result. My pony's reading has come back at 1112. He hasn't had laminitis for a lot of years and couldn't understand why his reading could be so high and he not have permanent lami. He had just had his teeth done and had had to be sedated to get them done before his bloods were taken. Could this have affected his reading?
		
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Yes. The vet should have taken the blood sample for the test before he did his teeth.  I'd get another test done.


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## The Lone Piper (27 July 2014)

Thanks for your advice. Will definitely get back to them for another test to get a more accurate reading. Many thanks again.


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## southerncomfort (13 August 2015)

Apologies for resurrecting an old thread!  Was just wondering how everyone's horses are doing now?  Have you been able to keep ACTH levels down?

My mare's level was 135 in December last year.  She was very, very poorly and it was touch and go for a while.  She has been on Prascend ever since but their are some signs that the meds aren't helping as much as we'd hoped and she is on as high a dose as my vet is happy to go with her.  

We are re-testing in September and I'm pretty nervous about it!


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## splashgirl45 (13 August 2015)

mine was diagnosed in 2011 with level of 172.  we had to keep increasing the prascend as the levels kept rising and she is now on 4 daily (my vet says 5 is the limit)...however she has been very well for the last 4 years but the lowest her level has been was 35 when it should have been under 29 so im not sure how long I will have with her.....as long as she stays well and happy I will keep her going even though financially its crippling me!!!!!!


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## Nudibranch (17 August 2015)

We let our mare go when the last test was 525 even on Prascend. But she was starting to decline very slowly so it was a case of her going while things were still comfortable, rather than just basing it on the numbers alone.


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## spamrestricted (23 September 2015)

My Morgan mare at 28 years of age was recently tested by Cornell university, my vet said they were doing testing for free for research. Her ACTH level was 734 pg/ml !! I avoid prescription meds for me and would like to do the same for my animals. I was so happy and thankful to learn from this thread that there is a natural supplement Cush x gold (now called vitex plus on amazon in U.S.). I will definitely be trying this, but should I bite the bullet and put her on these meds. I'm so afraid of the side effects and the long term damage that these meds may do.
Has anyone have their mare on pergolide/precedent for a long period of time and what improvements did you see in your horse? 
What exactly are the symptoms? My mare is very healthy and everyone says how great she looks for her age. She has been getting sick with things for the past couple of months. She got hives/bad case and she has never had this before. Then only 1 month later she got a very severe case of cellulitis. Her pastern area is still a bit swollen after 2 weeks on antibiotic, but her leg is not sensitive.
I love her tremendously and only want her comfortable and happy for however long possible. So I am at a loss what is the best thing to do for her. 
Very glad I found this thread.


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## OLDGREYMARE (24 September 2015)

I would suggest you join the ECIR horse group or look at the Laminitis Site which has a great facebook support group.Prascend really does work,vitex just suppresses the symptoms.


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## OldNag (24 September 2015)

Just been tested at 266 .. 
No other symptoms  but came down with bad lami out of the blue. Going straight onto Prascend.  2 tabs a day.


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## TwyfordM (28 September 2015)

91 when diagnosed. Put on half a tablet a day and retested at 29.5.
She's 11, symptoms weren't immediately obvious but something wasn't quite right. Been grand since then, back to her nutty ways!


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## spamrestricted (1 October 2015)

I purchased vitex and will also join the ECIR horse group. 

What is the longest a horse has lived while on prascend? Does anyone have a horse that has been on these meds more than 5 years? and if so, how are they doing, are they still good or any side effects happened? Thanks.


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## Coblover63 (15 October 2015)

Just tested positive late afternoon at 84.  Was told anything over 47 at this time of year is a positive so there is no doubt for him.  Collecting Prascend tomorrow to start 1mg daily.  He's not "right" and a bit footy so dietary management changes from tomorrow too.


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## southerncomfort (15 October 2015)

For those with recently diagnosed horses, and anyone wondering how effective Prascend is-

Last December, without medication, my mare's ACTH level was 135.  Retested last month at 47!  Shocked us all and the lab commented how well controlled her cushings disease is at the moment, so very happy!


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## mightymammoth (15 October 2015)

when would be the best time of year to get a "true" reading? I've heard the seasons can give false highs. I want to get my horse retested.


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## RoyalSapphire (25 October 2015)

mines was 1250+ she had no symptoms of cushings whatsoever but then suddenly got laminitis apart from that there was nothing. it was only when she got the lami that she got fat deposits above her eyes but that was it nowhere else. we got the vet out to do a cushings test as it was free with the voucher. when he saw her he said that she had lami (we already knew) and gave her some painkillers/anti-inflamitories as he said she was in ALOT of pain. he then took the blood for the cushings test but said he was 99.9% sure that it was cushings. as she was in alot of pain when he tested her could that have made a difference as when we got the results back they said that they'd never seen a case this high.


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## Gloi (25 October 2015)

RoyalSapphire said:



			mines was 1250+ she had no symptoms of cushings whatsoever but then suddenly got laminitis apart from that there was nothing. it was only when she got the lami that she got fat deposits above her eyes but that was it nowhere else. we got the vet out to do a cushings test as it was free with the voucher. when he saw her he said that she had lami (we already knew) and gave her some painkillers/anti-inflamitories as he said she was in ALOT of pain. he then took the blood for the cushings test but said he was 99.9% sure that it was cushings. as she was in alot of pain when he tested her could that have made a difference as when we got the results back they said that they'd never seen a case this high.
		
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Sometimes it's only once they are being treated and the levels have been back to normal for a while that you realise that a lot of things about the pony were actually symptoms of Cushings that had been put down to aging or other causes.


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## RoyalSapphire (26 October 2015)

Yeah. She was healthy. Then all of a sudden she got laminitis, that turned out to be cushings, and now she's got a sore stomach! She won't let me touch it and puts her ears back and swings her head at me if I go near it. Is this uclers? What are uclers? Asked vet but he just said that maybe it's an insect bite! What! If I give her uclers medication and its not uclers will it do anything? Vet said just to watch it but I don't want her dropping dead on me. She's got enough problems cushings, laminitis, thrush, really scabby/flacky everywhere, and now sore stomach! Thoughts? Also what products do u recommend for sore stomach/gut/uclers and the general immune system (open to herbs, etc)


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## Kristensusa (21 November 2020)

This is a very old thread, but my 28 yr. mare's case is extreme, so wanted to share for anyone reading to give encouragement to those whose horse tests very high. It is not necessarily a death sentence. I had my girl tested because she didn't shed out her winter coat, had lost considerable weight over a short period and was somewhat lethargic, but not overly so. I wanted to catch it and begin treatment quickly, if my suspicion of Cushing's was correct. I've lost 2 previously to complications from PPID in their 30s, so I know the signs.

Her first test for PPID was in May before we have green grass, and her ACTH level was over 1200. My vet said it was far and away the highest he'd ever seen in nearly 50 years of practice. He was not encouraging about her prognosis, but we started Prascend immediately - a normal dose of 1-pill/day. It took a more than a month to see any change. We floated her teeth, gave her a partial clip for summer, and fed her a ridiculous amount of low sugar pelleted feed. She was very thin, and because of drought our pastures were also thin. So she was allowed to graze naturally up to 4 hours/day all summer & fall. She didn't have trouble with her feet, but she developed a weird snap in her hind fetlocks (best way I can describe this), so of course, we watch her hooves obsessively. Six months in, so far, so good. She has gained to proper weight and is now back on a "normal" amount of feed. Her coat is lovely, shiny and soft, eyes bright and she frolics and gallops in pasture like a much younger version of herself.  I'm quite amazed by how well this mare has responded to the meds, and hopeful that winter will not be too hard on her. The only sign left of Cushing's is a little early dementia...she sometimes gets "lost" in her pasture when her herd mates are out of sight.


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