New to this forum with Bob, 12 1/2 y/o Collie cross - help!!!

[Isnthebeautiful]

Hi everyone
We are new to this site- have been fascinated by all the info so far and i hope i can get some help or advice for my Bob.He was diagnosed about 2 months ago but was suffering symptoms for about a year but the vets did not pick up on the Cushings. He is about 12 1/2 and a Collie cross with some sort of terrier. He has been very athletic all his life and its very sad to see that his back legs are turning to concrete and rapidly so. He has been on Vectoryl since diagnosis (started at 60mg,then 90) 120mg per day and is due a check in mid October. His coat went crazy,panting,skin problems,terrible hunger (he ate a can of dog food and he did not have a can opener!),all the classic signs but 2 vets missed this. But what is concerning us most is the muscle hardening - he swims every week and has physio.It was the physiotherapist that first realised his muscles were hardening and it wasnt arthritis that was making him shuffle his back legs.He doesnt bend his knees yet there doesnt seem to be a problem with his knees.Its so rapid its scary - we cant see past christmas at this rate of decline.The physio spoke to my vet who then spoke to the royal vetinary college.They recomended a drug called Procainamide.We looked this up - its for heart conditions! We are still waiting for the drug to arrive at the vets but we will have to look into this more before we give it to him.Any one out there got any ideas? He is such a happy dog even with his limited mobility,absolutely loves his swimming - we are lucky to have a doggy swimming pool nearby and we all go in together for a swim! The physio is going to do a case study on Bob as she has never come accross this.

[StarDeb55]

Welcome to you & Bob! I'm sorry that Bob is having such a hard time right now. I did want to let you know that I noticed you had posted in a section of the forum where most members would not see your post. I have moved your post to start a thread for Bob, so other Cushparents can easily respond to your concerns.

Debbie

[Spiceysmum]

Hi,

Welcome to the site. Sorry, can't help with any advice about the medication but I'm sure someone will come along with some advice soon.

Did the problems with his legs start before the Cushings diagnosis? Have you had ACTH tests after every dose change of Vetoryl, it seems a big jump to go from 60mg to 120mg in 2 months? Have the other symptoms got better since he has started treatment. Sorry for all the questions but everyone will want to know as well as results from ACTH tests and LDDS he has had one. I know it can be a problem to get results here in the UK but it can be done!

Linda

[Isnthebeautiful]

hi
thanks for your speedy response - it wasnt until i went on the forum i realise you need to know the results - you rely on vets to get it right! but i should know from experience they miss things - just like the late diagnosis of cushings.
being athletic all his life he has had injuries and you'd expect a bit of joint stiffness at his age but this is the muscles that seem to be causing the problem. the vets used to say he had fantastic muscle tone due to swimming every week.
he has good reflexes and the physio said if he was in arthritic pain then when we do the physio he would look bothered and he's not.
he is on metacam so maybe thats masking it a bit - he was on tramadol but we stopped that and we havnt seen any difference!
he is much better now and the cushings symptoms have eased,his coat is lovely again,just a couple of minor patches,his panting has reduced a lot and he's not so greedy and doesnt steal food anymore.
i am still angry the vets missed all these signs and didnt diagnose it sooner - we kept telling them something was wrong
what worries me now is if he was over producing steroid for so long where does it go? i hope thats not a stupid question! what organs does it damage? if any? or does it cause the muscle hardening?
i will ask the vets today for the results
thanks
jo

[AlisonandMia]

Hi and welcome from me too.

It sounds like Bob may have an uncommon/rare complication of Cushing's called pseudomyotonia. Here's a link to an article: http://www.vmsg.com/files/Case_Report_Canine_Hyuperadrenocorticism_and_Pseud omyotonia.pdf. It mentions the use of Procainamide and physiotherapy etc as treatment so it sounds you are on the right track.

Here's a link to an abstract regarding this condition in which a dog with PDH responded well to Procainamide.

http://www.ncbi.nlm.nih.gov/pubmed/9862060

Good luck and keep us posted.

Alison

[Isnthebeautiful]

thanks! was just coming back on to add the myotonia thing! the vet spoke to the royal vets college about that - was in a hurry earlier and forgot it,duh! thats great info - its just like him to get something rare,little devil!
makes me feel a lot better about giving him the drug
i am so glad i found you lot!!

[gpgscott]

Welcome,

I am glad that Bob is responding favorably to the Trilostane but sorry to learn of the other comlipcations.

Looks like Alison has given you a good lead to follow. I hope you learn more about his condition soon.

Best wishes. Scott

[Squirt's Mom]

Hi Jo and welcome to you and Bob! :)

Don't have any answers but it looks like Alison is on the ball as usual. I'm glad she came up with some info for you and hope it helps.

I'm glad you found us! As you can see you have found a great bunch of folks here. Keep reading and asking lots of questions; we will do our best to help you. Knowledge truly is power when dealing with Cushing's.

You and Bob are no longer alone on this journey. You have folks from all over the world on your side.

Hugs,
Leslie and the girls :D - always

[Isnthebeautiful]

the vet has agreed to give me a printout of his last results and i should get his new pills this week - thanks for your kind words.
i just feel so much more positive now
will keep you posted

[Isnthebeautiful]

we have now found its not possible to get the procainamide for the pseudomyotonia - no one has it,have tried everywhere but dont want to buy it on the net,you dont know what you're getting!
the vets didnt seem to be really interested in our plight and we have been getting so angry about it- the vet that diagnosed the cushings has left the practice and it was her (and the physio) that came to the myotonia diagnosis and said she would try and get the drug.
we felt we had to complain to the head of the vet group - i didnt even get to speak to a vet at our practice,only a nurse. you would think the new vet would take an interest but no.
i felt like 'walking' Bob into the waiting room in front of all the other customers and asking if they wanted their animal to be neglected by the vet they were in the right place!
the head vet has now looked into Bobs case and said its so rare, he would not prescribe the drug without a neurologist running tests on him as the drug can have fatal side effects. why did we have to kick a*** to get this?!
of course the neurologist was away today so i dont even have an appointment yet - delay delay delay
if the decline is not halted soon it will be too late for my boy.
please eveyone out there watch out for this condition with your dogs - i wish he had been diagnosed earlier with cushings - we may have spotted the myotonia earlier
i am getting the results of his last lot of tests tomorrow i hope so will be back
jo

[zoesmom]

Hmmmm, interesting Alison. That pseudomyotonia is a new one to me. How do you find these things???!!!! Good detective work. One thing did jump at me when reading one of the links and made me think of Kim's Annie. It mentions that dogs with this problem stand in a wide stance. Didn't Kim say that Annie stands with her legs splayed out? (Didn't mean to hijack Bob's thread . . . sorry.) Sue

[Isnthebeautiful]

bob doesnt stand with a wide stance............but if it was just muscle wastage the physio is the best person to spot that - she said the muscles had gone hard
is muscle wastage another symptom of cushings?

[AlisonandMia]

Muscle wastage (and resulting weakness) is a very, very common symptom of Cushing's but it would appear that dogs with pseudomyotonia don't get this symptom. The little dog in the picture in the article certainly didn't have wasted muscles.

Interestingly my little dog, Mia, didn't get any marked muscle wasting either (she had just about every other symptom though!) and I think, in retrospect, that she may have had just a touch of pseudomyotonia too. In her case it was probably actually a good thing as her luxating patellas were much improved in the wake of her Cushing's - maybe the slight muscle rigidity helped stabilize her knee joints.

If Bob didn't have marked muscle wasting this may have been one reason his diagnosis was missed for so long.:(

I've been looking into the availability of procainamide and indeed it looks like it is very hard to get hold of and it is probably not even available in the US (I realize you are in the UK, though). Those online pharmacies which boast of being able to supply it (and probably everything else under the sun) without a prescription don't exactly inspire confidence - as if such blatant dodginess would be a selling point!:eek::mad:

Alison

PS: When you say Bob is a collie cross - would that be Border Collie or Scotch Collie or some other sort of collie?

[Isnthebeautiful]

thanks Alison - he's a border collie cross
he's had a few injuries in his life so when he first had difficulty walking we naturally assumed arthritis
he doesnt bend his back left knee at all now and he does very small steps,his right back is going the same way
his hips dont move
also he is bandy in the front legs.
so now he will have an EMG test ( looked this up on the net) and all will be revealed - i hope!

[SasAndYunah]

Hi Jo,

welcome from me as well to you and Bob. I am sort of your "neighbour" since I live in The Netherlands :)

Reading about Bob and his neurological problems, brought back some memories. Not of pseudomyotonia but one of my former dogs had several complicated diseases and we saw the best neurologist in the country. And I all of a sudden remembered he mentioned Glasgow (at that time, the neurologist was the vice president of the European College of Veterinary Neurology, the ECVN). He discussed my Boncuk's case with some of his collegues and I remembered he mentioned Glasgow. So, I looked up Glasgow and found this website: http://www.gla.ac.uk/faculties/vet/smallanimalhospital/ourservices/neurology/

I also found an online article "Neuromuscular disease in dogs: some aspects of its investigation and diagnosis" from the Veterinary Surgery Department at Glasgow. Unfortunately, you have to subscribe (pay) to get the article ( http://onlinelibrary.wiley.com/doi/10.1111/j.1748-5827.1973.tb06495.x/abstract )

But what I am trying to say is, that you could ask the neurologist you are going to see, to contact Glasgow. If there is a neurologist in the UK that would know best about your Bob's condition, you will find him/her in Glasgow :) And it may give you the peace of mind that Bob and you are in the best possible and capable hands. Something so rare, needs true experts...with all due respect to your local vet and neurologist :)

I hope this information will be of some help to you and Bob.

Wishing you all the best,

Saskia and Yunah :)

[Isnthebeautiful]

thanks for that - i certainly will mention Glasgow - i just got an emergency appointment for tomorrow morning for an EMG so feel more positive now
Bobs 12 and a few months - i feel i am being robbed of his cute, smelly old age! he's been a fantastic companion and i owe him the best
i got the results from the test - i am typing as it is
06/07/10
basal t4/tsh ratio 45.3
thyroxine 8.6 low nmo1/1 18-58
cortisol pre acth 160.0 high 25.0-125.0
cortisol post acth 1195.0 high nmo1/1 125.0-520.0
was given 60 mg capsule per day
29/07/10
preacth 118(25-125)
post acth 268(125-520) but on vetoryl should be 50-200.considering bob still panting,thirsty and ravenous to switch to 6mg/kg
18/08/10
cortisol pre-acth test 111.0 (25.0-125.0)
cortisol post 196.0 (125.0-520.0)
post acth bob should be between 50 and 200 so he is in range at this dose
I have been told this is a high dose and he still has symptoms - pants in the night,drinks still more than he did before and he still is greedy.Only good thing is his coat is nice again and the fur is growing back
any comments guys?
jo

[zoesmom]

Hi Jo and Bob -

Sorry I confused the issue by mentioning Kim and her Annie. She's had ongoing difficulty in getting a diagnosis for her Annie's leg problems and I should have just posted in her thread about the wide stance thing as I was just thinking that Kim should probably read the link Alison posted here for you.

Anyway, on to you and Bob. Did I miss it or did you say what Bob weights (in either kg or lbs.) That would be helpful to know in regards to whether his dose is high for his weight. Dogs and their vetoryl requirements can vary widely from the norm. My cush girl, Zoe (who crossed the bridge in March) required a very high dose, compared to most. She was 80 lbs (36+ kg) and she took 180 mg. twice a day - or close to it - for most of her last three years. Even at that, there were some acth tests that came back borderline high (up to 10 ug/dl and one that was even higher at 13 ug/dl. (To convert your units of measurement to what we are used to, you'd divide the nmol/L by 27.56) So yes, Zoe's cushings was stubborn, you might say. So if Bob is taking 120 mg once a day, that may not be ridiculously high unless he's a smaller dog (why I asked his weight).

Two thoughts. His cortisol is now under better control (doing the math in my head :confused: shows his post # is about 7-8 ug/dl.) That's considered ok, as long as cushings symptoms are under control. But in Bob's case, it doesn't sound like the symptoms have completely resolved yet. He may need a still slightly higher dose OR if the symptoms seem to return at night, then twice a day dosing may be best. I'm not sure if he's on that right now - is the 120 mg just once a day? Theh otherh thing is, there are a very few dogs who can take up to 3 or 4 months to show improvement in the obvious symptoms. It's very unusual but I do recall a couple owners whose dogs took that long. So you could either wait another month - since it's getting close to 4 months, and see if things begin to get better with the drinking, eating, etc - or you could talk to your vet now about doing another slight increase since Bob still has some downward wiggle room with those last acth results. When I say slight increase, though, I mean very slight..... 'cause he's getting close except for those persistent symptoms of his.

I wonder if 90 mg twice a day might work better for Bob? Again, I'm not exactly clear what his dosing history has been as far as how many doses/day he was getting on those previous vetoryl amounts.

One other possibility comes to mind. Diabetes. It can sometimes appear around the same time as cushings and the symptoms are very similar, although those dogs can sometimes have weight loss, in spite of eating well. What has Bob's weight been doing. Has your vet run a blood glucose test lately. Also, have his thyroid levels been rechecked since June (and was he put on any thyroid med. back in June?) There is something else as well . . . . called diabetes insipidus. A few cush dogs will continue to have the big thirst after they start on cush tx and a handful of those dogs turn out to have diabetes insipidus. It's different than regular diabetes and does not require tx BUT there is a tx if the owner or dog is miserable from all the peeing, etc. DI's symptoms are excessive thirst and peeing (PD/PU), but as long as the dog gets unlimited access to water, there should be no concerns. IF it's something one wants to treat, however, there is a test called a water deprivation test and it should be done at a vet clinic so the dog can be closely monitored. Nowadays, however, most vets opt to simply try the medicine for DI and see if the dog's drinking/peeing improves. The meds for DI are pricey - and come in the form of either eye drops or nose drops (forget which???)

But for now, the best approach may be to just try to bring his cortisol down a teeny bit further and see if that helps. Once his ACTH numbers are down to 1.5 - 5.5 ug/dl, that might be all that's needed to take care of those last few remaining symptoms. If his cortisol gets to that point and his PD/PU still persists, then I'd suspect it might be one of those other things. (If it was diabetes mell. you'd probably be seeing other signs and clues, but I guess it couldn't hurt to check his glucose levels anyway.) Sue

PS - glad you have the appt for the EMG and that it gives you some answers for Bob's legs!!

[Isnthebeautiful]

hi
Bob weighs 20.6kg. Maybe a twice a day dose would be better - i will suggest this to the vet.He started on 60mg a day then 90,and now 120mg in the mornings. He was tested for diabetes over a year ago,it was negative - they should have been testing for cushings.But i'm glad to know he's not at the limit of dosage,was worried there.
His weight is steady now and we did battle with it for a while - he ws eating so much and got a bit fat! his peeing is absolutely normal,he has only twice had an accident in the house in a year - i reckon that was because there was food around and although he wanted to go was worried he might miss out!
There hasnt been a blood glucose test and his thyroid levels havnt been checked although the 'good' vet did mention it should be - i will mention it to the new vet.
Thanks so much Sue for your input
I will let you all know how the EMG goes tomorrow,fingers crossed,dont know why though! I really dont know whats going on with him so dont know what to wish for!I do know though that after complaining we are finally getting some attention
jo

[zoesmom]

So with Bob at 20.6 kg, that converts to about 45 lbs - which means he should be drinking roughly 4.5 cups/day. Or - using another formula - 45 oz. If we round that up to 48 oz, that = 6 c. So as a rough idea, something between 4 - 6 cups/day would be about right. It might help to keep a journal of his drinking for a week or two. I did that with Zoe for more months than I care to think about, but it was always a good yardstick of how she was doing with her cortisol/cushings. If it turns out he's still drinking a little more than that, then his cortisol may not be down to where it needs to be.

Yes, I'd definitely ask about another thyroid test, because it looks like Bob was low in June. Whether he's been on any thryroid med or not. If he's not drinking that excessively, you can probably forget about the diabetes insipidus idea.

Also, yes, Bob is on a high dose for his size, based on the recent more conservative dosing recommendations. But Dechra's original dosing range was 2 - 10 mg/kg and so, like you said, he's right at 6 mg/kg. And my Zoe was taking 10 mg/kg (at 36 kg and getting 360 mg of trilo/day). I believe they tested doses that were even higher than that in original studies and most dogs were fine. Generally, the twice a day dosing with vetoryl/trilostane is recommended only when a dog is taking a morning dose and then has a return of symptoms in the evening and overnight. Does it seem like Bob is having more of his symptoms at night. Also, if you do go to twice a day dosing, I wouldn't necessarily just double the morning dose (i.e. 120 mg in am and 120 mg in pm.) Instead, maybe something like 90+ 90. OR 75 + 75. Some do give a higher dose in the am and a lower dose in the pm - like 90 mg am and 60 mg pm, for example. I tried so many odd combinations with Zoe. Often, it's just a matter of experimenting to see what works best for your dog. Sue

[zoesmom]

18/08/10
cortisol pre-acth test 111.0 (25.0-125.0)
cortisol post 196.0 (125.0-520.0)
post acth bob should be between 50 and 200 so he is in range at this dose
I have been told this is a high dose and he still has symptoms - pants in the night,drinks still more than he did before and he still is greedy.Only good thing is his coat is nice again and the fur is growing back
any comments guys?
jo

So I was thinking maybe 'zoesmom' had lost it and that I had misread your thread or that I was confusing Bob with some other dog. (Blame it on my Cooky, wild and crazy1 yr. old border collie, who was bugging me to feed her and take her to the park while I was trying to post to you.) So, anyway, I came home and reread your thread and I see that you do feel like Bob is still panting too much - at night in particular. When you say drinking more than before . . . do you mean more than before his cushings diagnosis??? And greedy, meaning he's still kinda hungry, right?

Those, to me, would be indications that his cortisol is still not where it needs to be. And/or that diabetes mellitus should be ruled out. And/or that he really should have those thyroid levels rechecked. He's not on thyroid med, right?) All of those things can produce similar symptoms. That's probably why your vet was checking for diabetes a year ago. So much overlap of symptoms makes it hard to diagnose cushings, sometimes. And these are all things - along with the twice a day dosing - that you should probably discuss with your vet.

It sounds, however, like his legs are your biggest concern right now and I totally understand that. When they are hobbling around, it's so hard to watch. Anyway, didn't want to confuse you more if I was the one who was confused. :o So the only symptoms that have resolved since starting on vetoryl are his coat/fur problems (That's where measuring the water consumption might prove helpful. He could still be drinking more than average, but just not enough to affect his peeing.:p And if he is drinking a little more than average, it might just be because the cortisol level isn't quite there yet.)

Will be waiting to hear how that EMG test goes. And what they recommend for his legs. Hopefully, something! ;)Sue

[Isnthebeautiful]

we had the EMG done today and its bad news - it is pseudomyotonia.The neurologist said his muscles were rock hard.She did the tests then played us a recording of the 'noise' his muscles make - it sounded like WW2 aeroplanes! She said the muscles are not relaxing.Its a condition associated with cushings but very rare. She has prescribed 3 supplements to try for 2 weeks. She has done a nerve test also and found they were running at half 'power' too. The research details available on this disease are quite old. If the supplements dont help then we will have to try drugs which she is looking into. It seems like uncharted territory. As for the vetoryl she suggested we dose twice a day,smaller dose at night, 60mg.And we will measure his water too,good idea.
I also found out a vet made a note on his records in May 2009 'test for Cushings?' - no one told us!! And no test done.Cant help thinking if he'd been diagnosed earlier i may have been aware of muscle 'issues' associated with cushings.
Will get his thyroid checked too.Lets see how he goes with the supplements. Thanks again sue. What a curve ball!

[SasAndYunah]

Hi Jo,

sorry I didn't see this yesterday. I am wondering, did you ask the neurologist to contact Glasgow about Bob? If there is any recent insight in this condition, they should know it. They should also know which medication(s) to prescribe. And I am wondering also if she thinks it's pseudomyotonia or myotonia? There is a difference between the 2... the pseudomyotonia has an endocrine/metabollic cause and myotonia is neuromuscular caused. Wether this means that treatment and effect of treatment is different or not, I wouldn't know. I did read that with pseudomyotonia in some dogs it will resolve once cortisol is under control, but have no idea how long it would take to get better after the cortisol levels are succesfully reduced (weeks, months...?) These are all questions I would want to know and perhaps you already have the answers, I have no idea. And I also read that hydro/fysiotherapy can be helpfull. It's because I want to learn more about this condition as well, I am asking you all this :)

Wishing you and Bob a good weekend and courage,

Saskia and Yunah :)

[Isnthebeautiful]

hi
what i will do is send you a copy of his report - its interesting reading! i didnt mention Glasgow when i spoke to Clare the neurologist - apparently she is a European specialist so didnt want to add that into the mix! not till we know her better - we were really happy with the way she was with Bob and how she took time to explain everything to us. They are testing his thyroid again now and he's booked in for an acth test next week.He's on 120mg in the morning and 60 at night now and we are measuring his water intake.
I know this may sound crazy but we have noticed a slight improvement...........its only small but we are hopeful this is just the start
jo
PS if anyone would like to see the report i can email it if you let me have your email address - as i think the pseudomyotonia has possibly been caused by his very late diagnosis it would be interesting reading

[apollo6]

You are not crazy. If it helps post each day on Bob's progress. I have the same hind leg weakness and stiff gait with Apollo.
Hugs Sonja and Apollo

[mytil]

Hi Jo,

Glad you got my PM re: attachments. Any problems let us know.

Thinking about you and your pup.

Terry

[Isnthebeautiful]

hi
Bob had his acth today and we have had lengthy discussions with 2 vets re the late diagnosis of the Cushings. I cant go into too much detail there for obvious reasons! Anyway,he will have an ultrasound test tomorrow to hopefully find out what sort of Cushings he has and if there is further treatment,like radiotherapy.The symptoms still dont seem to be under control.His drinking is normal after we measured it.Although he seems to drink loads i realise now the pseudomyotonia affects all muscles including his mouth,so he has to lap and lap to get the water in!The neurologist thought he didnt chew his food that well and sucked it in. I think there is improvement in his mobility from the supplements but only in his front legs - maybe he had a little muscle wastage in the back and so when the pseudomyotonia hit it knocked them out pretty quick!His physio described him as an athlete,he had such great muscle tone. Anyway,will let you all know how he gets on.
Jo

[mytil]

Jo has asked that I include this report from the vet.

[SasAndYunah]

Hi Jo,

thanks for having the report attached to Bob's thread. It was some very interesting reading but heartbreaking when it's about your own dog. From my understanding, the neurologist isn't too sure yet if Bob has "true" pseudomyotonia (caused by excess Cortisol due to Cushing's) or if he has some other form of neuro/muscular disease? Is that correct?

How is Bob doing at this moment? Did you get the latest ACTH tresults back yet?

All our best to Bob and you,

Saskia and Yunah :)

[Isnthebeautiful]

hi
I think where she says 'it would be more correct to define the pseudomyotonia as a neuromyotonia ie. a suspected ion channel disorder secondary to neuropathy' kind of suggests its not been documented before because no one looked at the nerve conduction velocities. We have read and re-read the report and its difficult to understand! he's had an ultrasound now and we havnt got the full result but did find out he has the common Cushings (makes a change!) - he had an acth as well and we will get all the results on wednesday. We will also be talking to the vets as we feel that Bob would not be in this state had the Cushings been under control well before this. I know their defence is that he still may have developed pseudomyotonia BUT i think without the excess cortisol he wouldnt have got it. He also has the hind leg stiffness other members talk about. Problem with Bob he was so athletic during his life his muscles were very developed,so its hit him harder than other dogs maybe. Also we would have caught it earlier as i would have been very aware of muscle issues with Cushings. They were treating him for athritis.Didnt even test him for that.....just assumed it.I am livid,I have a disabled dog and feel it was avoidable.Sorry if I am repeating myself but we took him to the vets often with obvious Cushings symptoms,all last year.
We swim every Friday.The physio joined us this week and she showed me some exercises to do with Bob in the pool.We also take him to a big lake for swims but now its too cold - the physio said it would make him tense his muscles which he definately dont need!The supplements are quite expensive but we think there's been improvement in his front legs.His back legs will be more difficult I think. On wednesday they are starting him on Clonicalm which i believe is a human anti-depressant. I will be watching him very closely! But we are willing to try anything to reverse this.
Thanks for your post and I'm glad you found it interesting. I will post again after the wednesday appointment.By the way,Clare trained at Glasgow!
I just watched your videos of Yunah - what an amazing girl you have there! Made me laugh and cry,but in a nice way! Brought back such memories..........
jo

[SasAndYunah]

Hello Jo,

from the report it was already clear you were seeing a knowledgeable neurologist, thank goodness :) I am so sorry for you and Bob and the horrible symptoms in his neuro/muscular system. I understand when you say "he was so athletic..." the difference must be shocking. I know I would be devestated when my Yunah (also a very athletic Border Collie mix) would be so severely affected.

I went with one of my previous dogs to hydrotherapy and it was great. Perhaps, with swimming outside no longer being an option (it's freezing cold here as well) maybe you could give Bob warm water massages using your shower? I know my Sogno liked those a lot. The warm water relaxed his muscles and he would become all relaxed :) Or maybe a heating pad underneath his bed? Just thinking out loud what could make Bob more comfertable...

Well, please let us know how Bob will be doing with the Clomicalm. Is that prescribed to "relax" him/his muscles more? I was wondering about that.

And thanks for your kind words about my Yunah, she is indeed an amazing girl, and my biggest support and comfort in this world :)

All our best to you and Bob,

Saskia and Yunah :)

[Isnthebeautiful]

hi
yes,we go to a heated doggy pool - very lucky - its only about 2 miles away,places like that are rare! Its a good idea to try some extra therapy in the bath maybe,bet that would make him run! Hates the bath,loves the pool! I have a massager with a heated head on it.Every morning i massage each hip/leg/shoulder for 20 minutes,each side. The physio told me this would stimulate the muscles and nerves.
I got some of the results today from his last acth test and they have put him on 120mg in the morning and 120 at night now as still not happy the Cushings is being controlled.
Looking forward to the meeting wednesday and hearing all the lame (forgive the pun!) excuses!
jo

[lulusmom]

Hi Jo.

Can you please post the results of the acth stimulation test? Thanks.

Glynda

[Isnthebeautiful]

hi there
thanks for asking!
should get all the results tomorrow - including the ultrasound!
jo

[Isnthebeautiful]

here's Bobs results -
cortisol pre acth 150.0,post 208.0
he is now on 120 mg twice a day
his ultrasound showed that the liver was moderately enlarged,the gall bladder moderately extended,both adrenals plump and enlarged with rounded poles and a hypoechoic appearance consistant with trilostane administration.Both kidneys normal
We had a long discussion with the Head Vet about the neglect by previous vets and whether this had led to the pseudomyotonia. Its undocumented but i say that doesnt mean it doesnt.The vet said that he had worked in the RSPCA for 8 years and he had seen lots of advanced cases of Cushings and not one had pseudomyotonia. I said in my simplistic way,if the cortisol was rampant through his body for over a year,where did it go? He said the animal secrets it but i said that they have trouble forming urine so maybe some dogs cant secret it at the rate they need to and its stored somehow in the body - in the muscles?! I dont know - i'm not a vet or a scientist! But my dog was let down and his quality of life very impaired by his ravenous hunger (and the side effects of that) and excessive panting for so long.We have a copy of his notes back to Oct 2007 and the first sign of Cushings was July 08 - 'scavenger' is noted,diarreah - this was not normal behaviour for Bob and we remember he drove us mad eating rubbish off the ground - it was so bad we tried a muzzle! It was round this time his coat changed but that isnt noted - he was panting too and we would ask each vet when we visited 'if we cut his coat will that make him cooler and pant less?'
The hair fell out on his tail and we brought this to the vets attention - she laughed! Never scolled back to see if there was anything relevant to his coat changing and the hair loss. Like scavenging. In May 09 its on his record ' Cushings' - he saw 5 different vets - maybe having 1 all along would have spotted it or you could say why didnt 1 of the 5 spot it! All along they assumed the stiffness in his back leg was athritis so we had meds for that,maybe unnecessarily.
We feel extremely let down and now seem to be struggling to get this disease under control,add to that the pseudomyotonia and its just crap! We are doing our best for him though.
His 120 mg tablets are working out at £8 per day - we just got some on line for £4 so thats better! I think if he had been diagnosed sooner maybe we wouldnt be having this trouble now. I am not into blaming people,just want a practice that allowed my dog to suffer for so long rapped on the knuckles at least! So we will go to the RCVS with this. Ggggrrrrrrr!!!!
jo

[apollo6]

Dear Jo
Know what you mean. My little Apollo, now 12 had signs for years if I look back. We are more aware then the vets at times. We can't go back. Right now you are doing the best you can for your Bob.
Hugs Sonja and Apollo.

[Isnthebeautiful]

hi everyone
Bob is not doing too good and i was hoping for some input/advice from anyone.He's been on the Trilostan since July and is stable now but he's on way more than he should be for a dog of his size.He is 21kgs 46 lbs and 240 mg a day. He has Pseudo Myotonia too (hardened muscles) and its been an awful time trying to deal with this very rare side effect of Cushings. He is now on Mexitil for that.We started this a few weeks ago and the effect was dramatic at first but we only had 8 pills! Seems it was a rare drug.We now have a good supply and he's been back on it for about 10 days. His front legs seem better and are a bit more flexible but his back legs are getting so much worse.He can barely move them and its a struggle for him to walk.With Myotonia you start off moving very stiffly and then loosen up and thats what seems to be happening.And i have read that humans with Myotonia feel 'heavy'.But those back legs seem to be stiffer.If i remember rightly some other members of the forum had a similar experience with Trilostan (he has pit. cushings) and their dogs back legs seem to get stiff - i cant see any threads on it but i'd be very grateful for any input.
Bob still has good quality of life,enjoys his swimming,still loves his food and is bright and alert and wants to do stuff but is just not able.I am not prepared to give up on him yet. He has had 3 sessions of acupuncture for the Myotonia,we'd try just about anything now!No one has any experience of it. The blasted Cushings started it - its only ever been known as a rare complication of that disease.
Would it be dangerous to reduce his dose of Trilostan a little to see if there's any improvement?
He is under the care of a top Neurologist for the Myotonia - but she has never seen it before in nearly 20 years experience.
jo

[addy]

I know when Sonja wanted to stop the Trilostane for her Apollo she discussed it with Dr. Allen. I think I have his number somwhere posted on my thread. I will try to find it and post it for you. Perhaps you could call him like Sonja did. He is from the manufacturer of the drug.

I'll be back :)

Addy

[addy]

Here is the contact info Sonja gave me. Perhaps he could help you decide whether lowering the dose would be okay.


Why don't you email Dr. Allen at Decha/Trilostane, and run it by him .
Office: (913) 327-0015
Direct: (913) 748-4836
Fax: (913) 327-0016
Toll Free: (866) 933-2472
Cell: (785) 979-0227

tim.allen@dechra.com
www.dechra-us.com
He has always been very kind in responding to my emails and will even talk to you.
Hugs Sonja and Apollo

[labblab]

Hi Jo,

Have you had an ACTH monitoring test performed recently? That would be helpful information in terms of assessing Bob's trilostane dose. Also, I notice that you live in the U.K. So if you want to contact Dechra directly with a question, here's a link to Dechra's U.K. website:

http://www.dechra-eu.com/contact-us.aspx

Addy is correct that Dr. Allen has been very helpful to a number of our members here in the U.S. But I am guessing that it will be easier for you to talk with a member of the technical staff there in the U.K.

Marianne

[Isnthebeautiful]

thanks so much for getting back to me so quick - i will email the UK people - see if they have any guidance on that
I cant remember the exact figures from his last ACTH but it was finally in the right range!That was December 1st so it took quite a few months to get there.
We just got back from swimming - he loves it!
jo

[Isnthebeautiful]

hello
Bob had to have another ACTH test as he was panting excessively and drinking loads.Although he only weighs 46LB he was on 240 mg trilostan a day(120 x 2).
The results were pre 161,post 168
So they put the dose up again! By 30mg x 2. They tested him for diabetes but that was negative.After a week on the new dose the panting has subsided mostly but he still drinks a lot. We believe he has pit cushings after the ultra sound scan he had.
Does anyone know why the symptoms of Cushings can come back so suddenly? Its a real worry as the myotonia will just get worse and he's already pretty disabled with that.
I dont know whether to take him to an endocrine specialist,what tests do they do? Anyone think this is a good idea? Any advice greatly apreciated.
He's such a happy soul and takes all the rubbish he has to go through in his stride. We shaved him and i think that helps keep him cool,but he's still seeking out the cool spots.
jo

[Squirt's Mom]

Hi Jo,


The results were pre 161,post 168

I am assuming this is in nmol/l? If so that would convert to 16.1 ug/dl for the pre and 16.8 ug/dl for the post which are the units we are used to seeing. These figures, along with his continued signs, do indicate that the Trilo dose isn't controlling the cortisol as well as it could. Can you tell us how long after his Trilo dose the ACTH was performed?

Sometimes it takes quite a bit of tweaking with Trilo to get the dose right so it may be that you just aren't quite there yet.

Has he lost any weight? Is he peeing more or having any accidents?

I am sure some of our Trilo parents will be along to offer their experiences so just sit tight!

Hang in there!
Hugs,
Leslie and the girls - always

[Isnthebeautiful]

hi Lesley
thanks for getting back - the actual printout says
pre acth 161.0 high nmo1/L 25.0 - 125.0
post 168.0 nmo1/L 125.0 - 520.0
Must admit i dont understand a lot and when i look at other posts/threads i cant believe how much people know! I cant join in i'd feel an idiot! Never have been very technical...
His trilostan was given to him at 6am and the test was done after 10am so i assume thats ok .He is peeing more but isnt that just the extra drinking? And he has had some accidents in the house.This has happend around food though - he is still so greedy and wont ask to go out so pees on the floor! As for his weight he does look slimmer but cant say yet if he's lost weight,he's swimming at the pool this weekend and thats when we weigh him
thanks again
jo

[lulusmom]

Hi Jo,

The acth stimulation test must be done within 3 to 6 hours after dosing. You mentioned that Bob got his morning dose at 6:00 am and the stim test was done after 10:00 am. Was it done after 10:00 but before 12:00 noon?

Here in the states, we are used to seeing the reporting units in the acth stim test in ug/dl. Leslie's conversion was not quite right so let's convert again. To convert nmol to ug/dl, you divide by 27.59. So Bob's pre draw would be 161 divided by 27.59 = 5.85 ug/dl. His post draw would be 168 divided by 27.59 = 6.09 ug/dl. These numbers are are actually quite good for a dog on Trilostane, if symptoms have resolved.

It appears that you've seen some real improvements in Bob but he is still experiencing excessive drinking and peeing. Is that correct? You usually see pretty quick improvement in the drinking and peeing but some dogs don't have immediate resolution. Some dogs have not concentrated their urine for so long that sometimes it takes a while for the kidneys to regain this ability. This is called medullary washout. If Bob's other symptoms have improved, you could be dealing with medullary washout. It is also possible that Bob is one of those dogs that may require a bit lower cortisol to see complete resolution of symptoms. There is a third more rare possibility and that is that Bob is like a small number of the dogs treated at UC Davis who never saw resolution of the excessing drinking and peeing despite cortisol being well within the therapeutic range.

Bob has some unique issues such as, really high dosing, severe myotonia and big swings in symptoms. If Bob were my dog, I'd follow Marianne's suggestion and call Dechra to discuss Bob's case. They may be able to shed some light on things for you. Marianne already provided a link to Dechra's contact information but here it is again so you don't have to go back and search for it:

http://www.dechra-eu.com/contact-us.aspx

[Squirt's Mom]

:o:rolleyes: I thank you, Glynda! :rolleyes::o

I did some math somewhere else today....oh dear.... :o:p:o

[Isnthebeautiful]

hi
thanks for this info - he should have another acth very soon because of changing the dose.
i will get my husband to call Dechra next week about his case - i emailed them (twice) and they didnt get back to me - this makes me mad as this is my precious dog we are dealing with and so therefore wouldnt trust myself to be polite on the phone!
The excessive drinking is new with Bob,he drank a little more than normal when he first got Cushings.He started treatment last year and it was fine.Then just a few weeks ago it went crazy and he would lap for ages.Drinking pints!
Bob never had any pee issues until recently and considering he's deffo had Cushings since May 09 thats odd,looking at other folks threads.His coat has come back lovely and his tail almost back to its bushy prime!
As for the time it was done it was before 12 as i remember getting the call topick him up.Its a hospital practice we go to.
He was on a human heart drug called Mexitil for a week or two - this relaxed his muscles but it worked a bit too well and his back legs went! Soon as we took him off he regained the use in a couple of days,very scary.Will mention to Dechra - wonder if it caused the Cushings flare up...........?
thanks again for all the info - it really helps me and Bob.
I will let you know how we get on with the next test and Dechra.
Jo

[Isnthebeautiful]

hi
we called Dechra and spoke to a vet there.We explained our fears over the high dosage Bob was on but she said that she needed to speak to our vet as what she was going to tell us was very technical - we must have sounded stupid! But one thing we found extremely interesting she said that pseudo myotonia was a result of the Cushings not being treated. So there you have it - due to our vets neglect my Bob is severly disabled. No other vet admitted this was the cause in all our visits,although we suspected it.
We are waiting for our vet to get back to us after his chat with Dechra. We have not arranged another acth test yet.
We looked at the availability and cost of Lysodren in this country - its £850 for 100 pills!!!!!!!!!! and thats from an on-line company too.
jo

[Isnthebeautiful]

Hi
Bob had another acth test to see how the new increased dose is working and the results were good - pre 50.8 post 129.
So although thats ok he's still keeping us awake of a night panting.Soon as i move him downstairs where its cooler he stops.Dechra told our vet that there are lots of dogs who are on a higher than recomended dose and Bob has room for more than 300mg a day. We dont have any side effects from it.
So if anyone has any ideas about the panting (too hot= too much cortisol!) then i'd like to know........
Bob is such a happy dog....

[AlisonandMia]

He's on twice a day dosing isn't he?

Could be just that he's simply too hot with the indoor heating. The coat that many Cushing's regrow when their Cushing's is treated is often very, very thick and woolly, especially the undercoat, and it can make it very hard for them to lose heat efficiently. Often the coat just seems to get thicker and thicker as time passes, too.

Cooling mats can be good - if the dog is inclined to use it, that is.

Alison

[Joel]

Hi Everyone,

My dog, Jenny, has very similar symptoms to what Bob seems to have, Jo. You mentioned in an earlier post that you had him on 2 supplements which helped. Do you remember what they were?

Jenny's been diagnosed with Cushing's Myopathy, but from what you describe, I think it seems more like Pseudo Myotonia. Cushing's myopathy is also extremely rare. Her muscles are really rigid and she lays down with her legs stiff and not relaxed. Also, when she gets up, she drags her back legs up while walking forward with the front. Her front legs are also very rigid now and if she gets up too quickly, she'll nose dive with the front legs caving in. It's really upsetting to see.

Her pectoral muscles are also very stiff. We're not sure which form of treatment to follow, because they all sound so brutal on the body. We've been trying homeopathic remedies, but haven't had any success, so we're now thinking of starting her on conventional treatment which still treating her naturally and then hopefully we can get her to a stage with the natural remedies where we can make the switch to all natural.

I'd greatly appreciate hearing more about your experiences. I hope Bob has made good progress since you last posted several months ago.

Wishing all your pups good health!

Thanks,
Joel

[Isnthebeautiful]

Hi
I am so sorry to hear this Joel.This is a horrid disease and I totally sympathise with you.I would be glad to help you in any way I can.We knew there was something wrong with Bob but the useless vets didnt diagnose the Cushings.We feel that the late treatment made him develop the myotonia.Something to do with all that excess steriod rushing around the body and attacking the muscles.They go stiff - like when you tense in fright, but then the muscles dont release.I am sorry that the outlook for Jenny is not good and the most we could do is just make them comfortable.Bobs pecs were really stiff too - it was his physio therapist that spotted the myotonia.She was treating him for arthritis! Vets really are very stupid at times.I remember when the hair fell out of Bobs tail and it was bald for about 3" - she laughed! Anyway,your description of jenny walking sounds just the sameas Bob. We got him a cart which he loved so he could still get over the park and we were lucky enough to have a heated indoor dog swimming pool in the area which he loved.We all went swimming with him.This is a great exercise to maintain the muscle and I'm sure this extended his life.We would be in the pool for an hour - the only problem was he would get muscle burn cos he was a collie and they overdo everything!
We had a great neurologist,an expert in her field but she had not seen the disease in 20 years of practise but agreed late diagnosis of Cushings was very significant in his case.We tried him on a human heart drug.This made him too wobbly and sleepy so we abandoned that. The very first thing we did was put him on L-carnatine and Taurine - what body builders use!But the L-carnatine can give them diaroeha so you would need to get Protexin from the vet to help with that.He was also on Cardi Guard from the vet.His Cushings was out of control and he was on 240mg a day.I have written this without looking at anything else you may have posted on the forum! So I wont ask you any questions yet without having a look.There is a vet in the US who would be happy to help you too - I emailed him a few times - he was the only vet who knew anything about this disease.I will get his email address and my neurologists too and send them to you.Please feel free to ask me anything...in a way it makes me feel closer to my boy.
Jo

[Joel]

Hi Jo,

Thanks so much for your reply. We were also lead in the wrong direction for a long time. For ages, the hardened muscle in her one leg was thought to be a lipoma and she was thought to have a nerve related issue. We knew she had Cushing's, but were advised not to medicate at the time as it appeared to be under control and no-one ever thought it could lead to something as rare as this.

Jenny has added complications in that she also tore her CCL ligament in one leg a few years ago (full rupture) and last year, she dislocated her hip in the same leg (probably because of the stiffness, which caused her to just drop to the ground when laying down). She had FHO surgery on her hip last year and still holds the leg up when standing because the muscle is basically stuck in the position.

I would be most grateful if you could please send me the email address of the vet in the US who specialized in Cushing's and your neurologist. You can pm them to me if you prefer.

Thanks again for all your help.

Joel

[Isnthebeautiful]

Hi
Dr Petersons email is drpeterson@animalendocrine.com
I am sure he will be helpful. Also I had posted on here Bobs report from our neorologist.You should have a look at that - its still there.I am rubbish at computers - i just clicked on a little icon thats shown next to this thread listing on the main page.
Please keep us all informed of Jens progress.Bob was described by the physio as an athlete so it was very noticeable in him but they just treated him for athritis.Cushings is not rare especially in older dogs which Bob was so there was no excuse to not spot it.We went to the vets 13 times in as many months with problems that turned out to be related to the Cushings.You can tell I am NOT over it! Dont think I will ever be over their negligence.
My neurologist was Clare Rusbridge and she has her own website with special cases - there is a photo of Bob on there.I'm sure she wouldnt mind hearing from you too and will help if she can.Another drug we tried was Clomicalm which made him too tired again.
Good luck with it and please keep me informed.
Jo

[Joel]

Thanks very much Jo. I've emailed Dr Peterson. Will wait to hear back from him now. Thanks again for all your help - will keep you informed.

Joel