Need advice please about our Whippet - possible Masticatory muscle myositis?

[Elaine Graham]

Hello again Catherine and Jo!

I am so sorry to come back on here bothering you again. But sadly, I have another question about our 10-year-old Whippet Woody.

You will probably have forgotten by now but back in 2020 Woody started with Autoimmune disease of unknown type. The symptoms were lumps on his legs that came and went, pain on getting up from laid position and on sitting down from stood position. Added into this he lost his bark and seemed to have a sore throat, eating seemed to hurt him 50 percent of the time. Our vets did several tests, and Autoimmune disease was confirmed. SLE was then ruled out by further tests, and our vets consulted specialists in Liverpool who said they could do yet more tests in Liverpool to find out the exact type of Autoimmune disease concerned but there wasn't any point as the treatment is the same (Steroids!). We did all this with your help as until I contacted you, I didn't know the questions to ask. Woody then went on a course of steroids and we made sure it was the course you recommended. Again, we relayed your advice to our vets, they checked with Liverpool and Liverpool advised the same as you did. At this point I would like to thank you again for your advice, it was truly fantastic to have this. I would also like to say that thanks to you I have learned about so many more things such as vaccinations etc that I really wished I'd known before but I'm now able to spread the word to other owners (always with vets advice obviously). 

HOWEVER we think the Autoimmune disease is coming back now. Early this year Woody was diagnosed with heart disease – (Mitral valve disease (leaking heart valve) with marked heart enlargement. Mild subaortic stenosis (narrow outlet from the heart), with some leaking through the aortic valve. Possibly reduced systolic function (strength of contraction. Grade 5 heart murmur)
Woody was put on heart meds – Cardisure ¾ of a 5mg tablet twice daily. So as I understand it the heart disease is quite bad but he is stable now.
We were just coming to terms with the heart bombshell, when we noticed that Woody was starting to have a sore throat again and lose his bark, also drooling a tiny bit from the left side of his mouth. Also, his left-hand salivary gland was swollen. Our vet tested for salivary gland cancer by taking a sample from the gland. At the time one of the vet's assistants said it was quite likely that it could be salivary gland cancer and I remember saying to her that I'd noticed his face had become thinner and he was starting to have hollows under his cheeks. Then the tests for the cancer came back as negative which was a huge relief!  However, his face stayed thin, and his sore throat and lack of bark seems to come and go.

I feel sure this is his Autoimmune disease back again and talked to my vet about it. I wanted to investigate further and get him on another dose of steroids ASAP if needed.
But the problem is that my vet said because Woody is on heart meds he cannot go on steroids, she checked, and Woody's Cardiologist agreed. Also, our vet says she doesn't really want Woody to have a GA again if possible, so that would rule out some types of further testing. She has therefore had him on Metacam for a few weeks to see if that will help with the pain, which I am not happy about as it isn't getting to the root of the problem, however I am torn as I totally understand her advice about no GA and not having steroids.

I would have gone along with her advice, but I was looking at him last night and for the first time I was suddenly struck by the thought that his thin face couldn't just be a result of his heart disease or a sign that he is getting on a bit (he is 10) He has hollows under his cheekbones and muscles on top of his head are disappearing. I just suddenly thought that something isn't right. So I googled it and found that his appearance is quickly becoming very like a dog with Masticatory muscle myositis. He doesn't seem to have all the symptoms of this (he can open his mouth fine) but the muscle disappearance on his head is now becoming more marked. His face is starting to look sort of caved in looking. This coupled with the fact that he cannot bark, still gets pain when eating 50 percent of the time makes me think that continuing to mask the pain may not be a good way forward.

I am going straight back to the vets because of this but would greatly appreciate your advice on:
A) Do you know anything about giving dogs steroids that are on heart meds? Are there any ways round it?
B) Do you think we should try and sort this out? Our vet seems to think that we should essentially make him comfortable because of his heart problems and I agreed at first but now I am questioning this and would value your opinion.
C) Maybe I am panicking unduly but do you think he may have Masticatory muscle myositis, or something like it?

All the best and
Thank you once again
Elaine

[Catherine]

Poor you and Woody! It can be so debilitating dealing with one illness after another or trying to work  out what exactly that illness is. You are right to question things. Unfortunately vets only have a certain amount of time whereas you are with Woody more and will notice more.

I do not know anything about steroids and heart medication but I am sure Jo will soon advise on that. The same for M.M.M. I certainly think it is worth investigating what else it can be rather than just accepting to make Woody "comfortable".

Just a thought - has Woody's thyroid been tested recently? Hypothyroidism can make a dog's head muscle thinner and they can have any number of problems, - some with swallowing, joint problems etc.

[Jo CIMDA]

Hi Elaine

I am sorry that you have the need to come back to us at CIMDA.  As Catherine says, Poor Woody and poor you!

I have to agree with you that it look like Woody might have a myositis. This episode of AI disease could easily have been triggered by all that Woody has been through recently.   

There are two forms of myositis, masticatory muscle myositis and polymyositis.  The Masticatory form only affects the head and possibly the throat muscles.  Polymyositis can affect all muscles in the body including the masticatory ones.  With either of these AI diseases the treatment is with immunosuppressive drugs and usually the first line of treatment is an immunosuppressive protocol using prednsiolone.  Preds affect every part of the body and the muscles (and certainly the metabolism) are very affected by prednsiolone and I can see why your vets do not recommend steroids for Woody however, there are so many different immunosuppressive drugs these days that you may still have a choice of treating Woody's AI problem.  The drug that I favour would be Mycophenolate Mofetil (MMF).  I have had a look in the Plumb's Veterinary Drug Handbook 8th Edition and there doesn't seem to be any contraindications to the meds that Woody is currently on and the adverse effects do not list heart problems as contraindicated. This drug has become very popular over the last 5 or so years and the results are very promising.  There are also other non-steroidal drugs that can be used if MMF is not considered appropriate.

One thing for sure, if Woody does have a myositis it does have to be treated because if it isn't treated with an immunosuppressive drug then the muscle destruction will continue - also this AI disease is very painful. I would certainly have a word with your vet and perhaps he would consult with Liverpool or the RVC in Hertfordshire and find the best immunosuppressive drug protocol for Woody that doesn't include steroids.  I do believe it can be found, and treatment can start.  See this excellent link below listing immunosuppressive drugs.


https://canadawestvets.com/wp-content/uploads/2017/09/02-03-AndrewMackin-Seminar2017-ImmunosuppressiveTherapy.pdf

I wish you all the best and I hope you will come back and tell us how Woody is doing.

Jo
 

[Elaine Graham]

Thank you so much Catherine and Jo.

The information is really helpful. Thanks for giving me a clear idea of what I need to do now - I'll get straight onto it - I'm really grateful for your advice and of course I will keep you informed.

Thank you so much again!
All the best Elaine xx

[Elaine Graham]

Dear Jo and Catherine

RE Woody, Whippet – suspected MMM

I hope you are both well. Thank you once again for helping with advice about our Woody.

Further to my last message I am sending this as an update, and to ask for some more advice please.

We asked our local vet Joyce to refer Woody to Liverpool. Joyce went about getting the appointment, but I also asked her to talk to Liverpool to explain his heart issues and the fact that she and the cardiologist do not want him to have a GA. I suspected that in order for us to get an appointment at Liverpool, they would want to admit him and put him under GA and do some sort of imaging. Joyce said I was right, Joyce spoke to Liverpool, and they confirmed there is no point in us taking him there if they couldn't do the imaging. So, this being the case they have agreed to advise Joyce.
Apparently so far, they have been very good, they rang Joyce up and told her what tests to do. Joyce also asked them about the non-steroidal immunosuppressant that you mentioned, the MMF, and apparently, they said it has really bad side effects and should not be taken unless we are really sure it is AI disease and even then, it would be a last resort. Obviously, I haven't a clue so I cannot comment on that apart from being disappointed. What do you think? But apart from that advice they do not appear to have suggested alternatives. Joyce said 'lets get a better idea of what it is then go down the route of choosing the right meds'.

Joyce took some blood samples and she sent one away to the USA. She said the USA one would take a long time – 3 to 4 weeks. It is now exactly 4 weeks and still no news.

I have made another appointment for Woody to see Joyce on Wednesday next week because I am hoping the tests should be back by then. I started a list of questions for when I see her:

1. Exactly what tests has she done? (I was so pleased she had contacted Liverpool I didn't specifically ask what she was doing, for which I now feel bad about)
2. Ask if there are further tests she can do that don't involve GA?
3. Can you think of anything else I should be asking at this stage?

Woody hasn't got any worse, but his symptoms remain, and I am worried, I know if it is MMM or something similar he needs some sort of non-steroidal immunosuppressant regardless. When the first bout of AI was diagnosed 2 years ago, he was put on a low dose of steroids. He responded, so that gave further confidence that he did have some sort of AI disease. Then after that (with your help and Liverpool) our vet put him on the proper high dose and that banished the AI disease.

So in summary the things I would like to ask you are:
1. What tests would you expect to have been done?
2. Should I be asking anything specific on Wednesday?
3. My dad mentioned something called 'Helminth Therapy' Do you know anything about it? I've googled it and whilst it is really interesting, I could not find much more about it.
4. What do you think about the comments about the MMF?

Thank you so much once again.
All the best and hope you have a lovely weekend!
Elaine

[Jo CIMDA]

Hi Elaine

I am sorry for the late reply.  I hadn't seen you message until now (Daft me - sorry).  I do agree that the least done to Woody is the best approach.

There are many other immunosuppressants if Mycophenolate mofetil isn't appropriate for Woody. I don't think you have any other choice but to listen to Liverpool.  I would ask them about Leflunomide.  This is often given to dogs with muscle weakness conditions such as myasthenia gravis and MMM.

I have heard of the 'Helminth Therapy' but I don't know anything about it either.

I think I would ask, taking everything into consideration, what the options are for Woody.  Liverpool are a good Vet School but if they don't come up with a plan then perhaps your vet would call the RVC.  They are usually very helpful and they have an interest in AI disease in dogs.

I wish you luck Elaine.

Please let us know how things go.

Jo

[Elaine Graham]

Thanks very much Jo! xx

[Elaine Graham]

Dear Jo and Catherine

I hope you are both well.
Just a quick update on Woody:

After doing as many non-invasive tests on him as possible, and working with Liverpool the following has been concluded:

Liverpool think Woody is an unusual case and in an ideal world they would like to do lots of tests to try to get to the bottom of things. But those would involve sedation at the least (biopsies) or general anaesthetic (for CT scan) but they understand our/our vet's concerns with his heart.

They now think the signs are very unlikely to be masticatory myosotis since the tests were negative, and feel that the signs don't point to immune mediated poly arthritis (especially his jaw movements and salivation/difficulty swallowing). However, they think it could be an immune mediated polymyositis (muscle inflammation) So they think some sort of immune modulator might be worth a try, with the proviso that the drugs could cause side effects and may not help as they are treating somewhat blind.

In addition, they have said we should now take a blood sample to check for a toxoplasmosis antibody level. They said Toxo is rare in dogs but when it occurs it can cause neurological signs, and if we suppress his immune system and he has it could flare up catastrophically. We are hopefully getting the test done today.

They have said of the drugs available if the toxo is clear, cyclosporin would be the preferred one as it is hard to correctly dose mycophenalate in a smaller size dog, and too high a dose often results in gastrointestinal signs.

So in summary we are doing the blood sample for toxoplasmosis titre. If negative then we are allowed to trial the cyclosporin. 

So after all this explanation, my question is: If Woody can be put on the cyclosporin, what dose do you think he will need? I am going to ask my local vet Joyce to obtain instructions from Liverpool of course but I remember with the prednisolone the guidance was very specific (a big block tapering down). I remember that thanks to your advice we were able to ensure Woody was put on the right dose of prednisolone. Is there specific guidance with cyclosporin?

Thanks again for all your help!
All the best Elaine

[Jo CIMDA]

Hi Elaine

At least you have a direction in which to go now.

To be honest a definitive diagnosis is not that important .  Most inflammatory AI diseases are treated the same and that is with immunosuppressive drugs - and there are lots to choose from.   One reason why they would not choose prednsiolone is that the side effects can cause muscle weakness and if you are treating an AI disease that involves the muscles then it is better to choose from one of the other immunosuppressive drugs that don't carry this particular side effect.


https://www.dvm360.com/view/immunosuppressive-drugs-beyond-glucocorticoids

Cyclosporine has been used for many years as a secondary, or primary immunosuppressant.  It doesn't kick in for at least 10 days, so don't expect to see improvement before this time - if you do see it, then that is a bonus.

Plumb's Veterinary Drug Handbook, 8th Edition:

Cyclosporine - as an immunosuppressant:

Empirical dosages generally range from 3-2mg/kg twice a day or 5-7.5mg/kg once daily.

The most common side effect is gastrointestinal.  If this upsets his tummy then you can start at a lower dose and increase as his body becomes more tolerant.

Fingers crossed that this works for Woody.  If he doesn't tolerate cyclosporine then there are other drugs such as leflunomide etc.....

Thanks for the update.

Jo

[Elaine Graham]

Thank you very much Jo

I know - we feel better that we have some direction now!

Yes, I think the other reason they have said Cyclosporine is because of Woody's heart issues.
Thank you very much for the info on dosages - so will Woody need to go on a big block of the Cyclosporine and then come off them? (like he did with the Prednisolon) Or will he be on a sort of maintenance dose all his life now?

I just remember when we started Woody on the Prednisolone with his first AI flare up Woody was put on too small a dose, and you advised a big dose tapering to nothing. Our vet then consulted Liverpool and you were right.

So I am just wondering if it is the same with the Cyclosporine?

All the best Elaine

[Elaine Graham]

Dear Jo

I hope you are well and coping with this heat.

Woody's Toxo test was clear so he is allowed to go on his new medication. We have been and collected it and this is what he has been given:

Sporimune (Ciclosporin) in liquid form and he is being given 9.66mg per kg per day for 4 weeks, then he will be reviewed to hopefully taper it down.

Does this sound right to you?

Kind regards Elaine

[Jo CIMDA]

Hello Elaine

I am hoping that this new treatment will help Woody and remission will be achieved.  Great news that he is negative for Toxo'.

Liquid cyclosporine is relatively new in comparison to the tablet form, and it is being used more often these days, so given that my drug books, although excellent, are a few years old, they do not have the dosage for liquid cyclosporine (Sporimune).  Below is a reliable source of information by the drug control body, NOAH.   I hope you will be able to check whether the dosage that Woody is on is correct.

Please let us know how things go.  wishing you and Woody all the best

Jo
 
 
https://www.noahcompendium.co.uk/?id=-450265

Viewing Datasheet
Sporimune® 50 mg/ml Oral Solution for Cats and Dogs

Dosage and method of administration
Dogs: The mean recommended dose of ciclosporin is 5 mg per kg body weight (0.25 ml oral solution per 2.5 kg body weight). The veterinary medicinal product should be given at least 2 hours before or after feeding.
The product should be administered directly into the dog's mouth on the back of the tongue using the graduated dosing syringe supplied (1 ml oral solution contains 50 mg ciclosporin) and delivering the entire dose.

Duration and frequency of administration
The product will initially be given daily until a satisfactory clinical improvement is seen (assessed by intensity of pruritis and lesion severity - excoriations, miliary dermatitis, eosinophilic plaques and/or self-induced alopecia). This will generally be the case within 4-8 weeks. If no response is obtained within the first 8 weeks, the treatment should be stopped.
Once the clinical signs of atopic/allergic dermatitis are satisfactorily controlled, the preparation can then be given every other day as a maintenance dose. The veterinarian should perform a clinical assessment at regular intervals and adjust the frequency of administration to the clinical response obtained.
In some cases where the clinical signs are controlled with every-other-day dosing, the veterinarian can decide to give the veterinary medicinal product every 3-4 days. The lowest effective frequency of dosing should be used to maintain the remission of clinical signs.
Adjunct treatment (e.g. medicated shampoos, fatty acids) may be considered before reducing the dosing interval. Patients should be regularly re-evaluated and alternative treatment options reviewed.
Treatment may be stopped when the clinical signs are controlled. Upon recurrence of clinical signs, treatment should be resumed at daily dosing, and in certain cases repeated treatment courses may be required.