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

Started by Elaine Graham, May 15, 2022, 03:50:42 PM

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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