I am trialling Dantrolene shortly 🙂

[catembi]

…or rather, my horse is. If anyone is interested, shall I update on how it goes?

I am very hesitant to post this. He tested +ve for PSSM/MIM p2/p3/px and struggles to work even in walk. He will do 4-5 strides of trot with a lot of encouragement. 11 year old 17hh ex racer by Sand Mason and was a real Rolls Royce ride before he got symptomatic.

I don’t want to post as I know that various people think that the test is invalid and that it’s all in my head or down to my bad management especially as I have been ‘blessed’ with several PSSMs on the trot. As if I have a weird equine Munchausens by proxy. But a lady put some before and after videos of her horse on FB during a trial and it looked definitely worth a go.

I would not dare to post videos of mine, especially not ‘before’. While I think it’s so important to share information, I don’t have a thick enough skin and so have stopped posting about my struggles. It’s destroying me not being able to ride much despite trying every supplement, special rug, PEMF device etc, it’s worse not being able to talk about it (mine are at home and husband isn’t interested so zero support network) and I found it very hard being told that it’s my fault/bad management/in my head.

So if anyone is interested in how it goes, I will try to put my brave pants on and post about it? I am also quite apprehensive about the whole thing, as anyone who has ridden an exploding PSSM/MIM will understand… I literally have no idea what will happen.

 

[Birker2020]

…or rather, my horse is. If anyone is interested, shall I update on how it goes?

I am very hesitant to post this. He tested +ve for PSSM/MIM p2/p3/px and struggles to work even in walk. He will do 4-5 strides of trot with a lot of encouragement. 11 year old 17hh ex racer by Sand Mason and was a real Rolls Royce ride before he got symptomatic.

I don’t want to post as I know that various people think that the test is invalid and that it’s all in my head or down to my bad management especially as I have been ‘blessed’ with several PSSMs on the trot. As if I have a weird equine Munchausens by proxy. But a lady put some before and after videos of her horse on FB during a trial and it looked definitely worth a go.

I would not dare to post videos of mine, especially not ‘before’. While I think it’s so important to share information, I don’t have a thick enough skin and so have stopped posting about my struggles. It’s destroying me not being able to ride much despite trying every supplement, special rug, PEMF device etc, it’s worse not being able to talk about it (mine are at home and husband isn’t interested so zero support network) and I found it very hard being told that it’s my fault/bad management/in my head.

So if anyone is interested in how it goes, I will try to put my brave pants on and post about it? I am also quite apprehensive about the whole thing, as anyone who has ridden an exploding PSSM/MIM will understand… I literally have no idea what will happen.

I didn't want to read and run but I just wanted you to know that I am behind you! Best of luck.

 

[Tarragon]

I am never sure about sharing anything on a public forum, so I am wary, but I also recognise the issue of not having anyone to share anything horsey with at home and how soul destroying it can be, especially when you have doubts and need support.
Sometimes, this forum can be the most supportive bunch ever! Especially, if the poster is either someone who is respected, or someone who is learning and shows willingness to take advice.
I learn an awful lot from this forum, sometimes by picking up something I didn't know and would find useful, or sometimes by learning from other's mistakes.
I suppose you may think how many future internet searches may uncover your findings and help others?

 

[Hormonal Filly]

Will be totally honest. My Welsh D was negative for all variants (inc P2) but had muscle enzymes off the scale. He lost all muscle and looked awful at his worst. We tried Dantroline for a month, it didn’t make any difference. Best thing for him was vitamin E, Tri aminos and regular work. He did improve and gained a lot of muscle.

I think muscle issues can come hand in hand with the liver, and we never tested his liver function and turns out the yard he was at had a huge issue with severe liver damage in all horses.

Since being with his new owner the last 2 years he’s only on a balancer, and looks the best he ever has. I am now adamant he probably had liver damage and that was the cause of it all, I won’t ever know but she sends videos and photos and he looks brilliant.

 

[Hormonal Filly]

I really hope you see some improvement, I’ve read it works for a lot of horses. Would love to follow how you get on.

 

[cauda equina]

Good luck Catembi
When you have exhausted all other measures anything is worth a try imo

 

[catembi]

The most frustrating thing is how something can work for one horse but not for another! E.g. triaminos. They work for so many but sent mine absolutely potty. I didn’t put 2 and 2 together until some on a FB group asked, ‘Do triaminos send anyone else’s horses loopy?’ Took him off them and the fire breathing monster subsided, thank goodness. And that’s one of the things that is supposed to be universally helpful

 

[Haniki]

Wishing you luck, if you have tried everything else, it’s got to be worth a go.

 

[SEL]

I wish vets would give dantrolene a go more often - along with gabapentin. Robaxin for PSSM type 1

I've seen a polo pony who tied up regularly managed perfectly well with dantrolene and a sensible warm up / cool down procedure. I've also seen one where it helped a bit but that horse kept getting laminitis (off grass) so there was obviously something else going on.

Hope it goes well

I'm still on the fence about the genetic tests but I don't think issues which lead owners to do the testing are in their heads

 

[MereChristmas]

@catembi I’m afraid I don’t know anything about this. We always learn when our horses ‘break’ don’t we?

I put a video of F on this forum hoping it would help someone, anyone in the future.

So, yes, I am interested and thank you for being brave enough to chart the ‘journey’.

 

[Jambarissa]

Good luck with it, I hope you see significant difference.

It's an area tfar just isn't well understood with diagnosis and treatment being rather sketchy, hopefully it'll improve.

I am wondering about my heaviest cob, but then it could easily just be her way of going. Would happily do a hair test but seems no real point to it.

 

[BBP]

I’d definitely be interested. My horse has RER (I refuse to call it a PSSM variant because it has diddly squat to do with glycogen storage) and I think that is the condition dantrolene is most used for? I never tried it so I’d be interested to hear how we get on.

 

[Nicnac]

Well done for posting. I have been educating myself on EMS for the past 12 months and am finding it both fascinating and terrifying that we are now seeing so many insulin/metabolic related diseases. Is it our (i.e. modern day) husbandry; grass quality/availability; better diagnostics; a mix of things?

Is there such thing as an Equine Endocrinologist in the field? All those who are specialised appear to work in research.

 

[ycbm]

I think this is brave of you and I will be very interested in the result.

 

[Pearlsacarolsinger]

I shall be very interested to hear about the outcome. I have learned a lot from BBP's posts and will always wonder if the TB x Welsh mare that I had years ago had PSSM, of course in those days we knew nothing about it.

 

[catembi]

BBP, I do understand your point. That is why ‘type 2’ has recently been renamed ‘muscular integrity myopathy’ as it’s recognised that it isn’t anything to do polysaccharide storage! I think that back in the day, ‘they’ found a condition that wasn’t type 1, so they called it type 2 as the symptoms were similar. I think that type 2/MIM is to do with calcium channel signalling issues but I wouldn’t be able to explain any further!

 

[SEL]

BBP, I do understand your point. That is why ‘type 2’ has recently been renamed ‘muscular integrity myopathy’ as it’s recognised that it isn’t anything to do polysaccharide storage! I think that back in the day, ‘they’ found a condition that wasn’t type 1, so they called it type 2 as the symptoms were similar. I think that type 2/MIM is to do with calcium channel signalling issues but I wouldn’t be able to explain any further!

They're a whole mix of things PX seems to be similar to RER in the calcium signalling pathways going awry - which dantrolene is known to support - but the other genetic mishaps they are digging up seem to be issues with the muscular structure itself. P8 & K1 equivalents in humans are pretty catastrophic and I can't work out why a positive equine genetic test (assuming the owner is testing because they have symptoms) isn't also supported by biopsy tissue. But perhaps there are humans walking around with the same faulty genes and who are none the wiser.

I think if PX is the major issue with yours then you should see improvement on dantrolene. I don't know enough about P2 or P3 to have any idea if it would help - but must be worth a go

 

[Hormonal Filly]

@catembi this might of already been answered and apologies, no hate and certainly not doubting your management!

Have all your horses with PSSM been kept at the same yard?
I’m intrigued, I’ve realised vets know little about it in my experience and it baffles me how since moving yards my previous horse is doing so well.

 

[catembi]

I know that the biopsy doesn’t always correlate as sometimes it might be in different muscles, the horse might not be old enough to have sufficient damage to show up or the horse might be having a remission phase for whatever reason…

I agree that there is a lot more going on than has been discovered so far. It feels as if there are several large missing pieces… For now, all we can do is work with what we have. Unsatisfactory, but

P2s can struggle with balance…mine has a real job travelling even on the motorway at a steady speed. P3s can be a bit gastric…my other TB who is 19 is p3/px and needs careful gastric mgmt.

Or there might be other stuff in play… I just wish more was known! It’s like playing battleships…

 

[catembi]

Mine have lived at home but in two areas a good half hour apart with completely different soil types etc. Several have gone out on loan as companions and not improved. A couple sold as companions. One did improve…a 4 yo px TB…but that’s all gone a bit quiet now so I am not sure whether the wheels came off again or not. I have done several complete changes of feeding regime over the years. My old TB was on retirement livery 100 miles away for two years and went on loan for 6 months after that. So several have had complete breaks from me and only the 4 yo improved. The other 4 year old, TBxID with a dash of warmblood, p1, p4, px/px, has not improved in over a year of being 100+ miles away from me under completely different management.

I did get my old TBx pony mare to 40 without her getting it (owned since 3) so I don’t break all of them!

 

[Hormonal Filly]

Mine have lived at home but in two areas a good half hour apart with completely different soil types etc. Several have gone out on loan as companions and not improved. A couple sold as companions. One did improve…a 4 yo px TB…but that’s all gone a bit quiet now so I am not sure whether the wheels came off again or not. I have done several complete changes of feeding regime over the years. My old TB was on retirement livery 100 miles away for two years and went on loan for 6 months after that. So several have had complete breaks from me and only the 4 yo improved. The other 4 year old, TBxID with a dash of warmblood, p1, p4, px/px, has not improved in over a year of being 100+ miles away from me under completely different management.

I did get my old TBx pony mare to 40 without her getting it (owned since 3) so I don’t break all of them!

Sounds like really bad luck I think a lot of owners ignore it, people told me I was being anal about my gelding but I knew something was wrong..

Hope you see a improvement

 

[catembi]

I am now on my 6th but I think I self select because my ‘type’ is athletic but laid back and sadly the laid back element seems to be supplied by MIM. Once they start slowly building up to full work, they go symptomatic. Then because I now know the signs, instead of faffing about with saddle fit, etc etc etc I get on and test.

My Dartmoor was purely a companion so I didn’t ‘choose’ her as such, but I backed her when my new 4 yo went wrong as I had no more money and wanted to ride. She went spooky and also kept stopping just as she was getting fit and she tested p4, which is a bad one. With Trev, I tried everything… He had ks so we did ks surgery, treated for ulcers, tried every treatment I could think of… Retired as I just couldn’t figure it out and type 2 wasn’t a thing back then. He is p3/px but before I found that out, we did try absolutely everything else. Loads of bloods, neurological work up, different saddles, supplements…

I got him tested as I have owned him since 5, he is now 19 and I just had a feeling and wanted to know.

 

[gunnergundog]

...

 

[Fjord]

I've nothing useful to add bit I really hope the treatment helps.