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Kate H
11th April 2012, 03:11 PM
I took Oliver to the Royal Veterinary College near London yesterday for his 'interview' before starting on the clinical trial of two different SM drugs. He had a blood test and was poked and prodded and passed with flying colours. So next Sunday we start on the 6 weeks of trial. He will be taking Rimadyl throughout as a baseline pain relief - in case one or other drug doesn't work so well for him. So one week on Rimadyl alone, to get his present drug regime (gabapentin and Zitac) out of his system; then two weeks on Drug A. Another week on Rimadyl alone to get Drug A out of his system, then two weeks on Drug B. For each week I have to give him a mark on a line between 'Leading a normal life' and 'So much pain he should be euthanased'!! The RVC will then tell me which drug seems to work best for him, and he can probably continue to take that one. We won't need to go back to the RVC (thank goodness - it was interesting, but a bit of a drag by train).

Oliver seems a good candidate for the trial, as I'm beginning to think that gabapentin really doesn't work all that well for him; we've recently doubled his dose to the maximum possible, but it hasn't made a great difference - he still gets a lot of headaches (probably fairly mild, but I'd rather he didn't have any!), even though he's never had the intense pain that some SM dogs experience. So I'm hoping the trial will find something better for him.

The researcher for this trial needs more Cavaliers to take part. You don't have to go to the RVC - Cambridge, Clare Rusbridge in London, and Nick Jeffery in the US (Iowa State) are also able to do the 'interview' and oversee the trial. Do think seriously about taking part - the trial could really help the treatment of dogs with SM, and for most of them medication is the only option we've got at the moment. To find out more you can email ckcstrial@gmail.com

Margaret came along with me to find out more about the trial firsthand - and I much appreciated getting a lift from Hatfield station, although I had worked out the buses! It was interesting talking to the main RCV researcher, Johnny Plessas, who had worked with Nick Jeffery in Cambridge. A good piece of information he gave us was that since the earlier trial of pain relief (about 5 years ago) the RVC has been working with a pharmaceutical company and they will be unveiling their product shortly.

Kate, Oliver and Aled

Nicki
11th April 2012, 03:22 PM
So pleased it went well and we really hope that one of these drugs will help Oliver more than his existing meds.

The trial sounds very interesting, wish we were near enough to take part - but I do hope others on the board will be in a position to do so, if it only involves one visit then that makes it more available to people.


It's good to hear that the RVC have been working with a pharmaceutical company and I look forward to hearing more about that.

Thanks for updating. us.

pippa
11th April 2012, 03:46 PM
Glad it went well and hope Oliver is feeling better with the new meds..

Kate H
11th April 2012, 06:05 PM
I applied for the clinical trial a couple of months ago, not because I felt it would benefit my dog in particular but because I believe that all of us with SM dogs should be (and many already are) doing everything possible to help the researchers and to improve treatment for all dogs with SM. Even if it doesn't help Oliver, it will still be worth doing. It's only in the last few weeks that I've been wondering if a different medication would be more effective for Oliver (thinking Lyrica!) - if one of the trial drugs helps him, that will be a splendid bonus, but not the main reason I applied for the trial. The trial is being very careful to ensure that no dog taking part will be harmed in any way, you can withdraw at any time, but you never know, you may be testing something that will really improve your dog's quality of life (and that of many others).

Kate, Oliver and Aled

sins
11th April 2012, 06:19 PM
Good decision Kate,
It's very well worth doing and hopefully some real tangible benefits come from the study.
Sins

Karen and Ruby
11th April 2012, 09:21 PM
Charlie was on the trial also. He started 3 weeks ago.

Last week he started to wake me up at night coughing and getting breathless during runs.

I paniced thinking Heart Failure of course! Took him to the Cardio who ran his tests and told me nothing had changed- the only thing that had changed in his life was the new drugs he was taking.

So I decided to take him off- I know it was probably co insidence BUT I am not willing to risk his health :-(

He wasnt doing to well with the pain management either and was obviously uncomfortable so have put him back on what he was taking before hand and he is much happier since.

Co insidently the coughing has stopped and he is back to his normal excersice tolerance too.

Im disapointed that we couldnt continue but have to put him first x

Margaret C
11th April 2012, 10:31 PM
Wonderful Kate is really downplaying the effort she made to support this trial. She left home with her two dogs at 10am and did not expect to get back until 8pm.

More candidates for this trial are needed. Please help if you can. The Cavaliers do not have to be Kennel Club registered, so rescue or unregistered pets can take part, but they must have MRI confirmed Chiari-like malformation and/or syringomyelia.

The researchers are obviously not saying what the trial drugs are but Kate was told they are both licenced for humans but not dogs. Despite this they have actually both been used to treat dogs so it is known they are safe to use.


The details are below............


Clinical Trial

Comparison of two different treatment options for the management of neuropathic pain in Cavalier King Charles Spaniel dogs with Chiari-like Malformation/Syringomyelia.


Background Information

Syringomyelia is common neurological condition of Cavalier King Charles Spaniels (CKCS) that is characterised by the development of fluid filled pockets (syringes) within the spinal cord caused by changes in the flow of the fluid in the brain and the spinal cord due to Chiari-like malformation. Syringomyelia is often presented with episodes of facial rubbing, pain, scratching and / or lameness.

Currently, many different drugs have been proposed for Chiari-like malformation and syringomyelia but there is no evidence that any of these drugs is actually helping to improve the symptoms.

Purpose of this Research Trial

The aim of this multicentre study is to determine the best available medical treatment for dogs affected by Chiari-like malformation/Syringomyelia.

Which dogs can be enrolled in the trial?

Only CKCS dogs with MRI confirmed Chiari-like malformation and/ or syringomyelia can be included in the trial. These dogs must show clinical signs of neck/ back pain, air scratching, facial rubbing, screaming/ yelping episodes or wobbliness. Dogs with kidney or gastro-intestinal disease cannot be included.

Are there any side effects associated with these drugs?

No serious side effects have been reported with the use of these drugs which have been used in dogs before and no placebo treatment will be used. Some dogs may experience vomiting, diarrhoea, drowsiness or wobbliness. However, your dog should not participate in the trial if it has history of kidney disease or gastrointestinal disease.

Do I need to pay for anything?

The cost of the treatment can currently be offered free for CKCS participating at the RVC site and the owner of the dog will not pay for any consultations or re-examinations associated with this trial.

Right of refusal to participate and withdrawal

You are free to choose to participate in the study. You may refuse to participate without any loss of benefit. Your dog will receive the same standard care and treatment which is considered best irrespectively of your decision to participate in the study. You may also withdraw at any time from the study.

Confidentiality

The information provided by you will remain confidential. Nobody except the veterinarians involved in the care of your dog will have access to it. Your name and identity will also not be disclosed at any time. However the data may be seen by an Ethical Review Committee and may be published in journal and elsewhere without giving your name or disclosing your identity.

If you want to participate in this trial and hopefully make a difference to dogs suffering from Syringomyelia / Chiari-like malformation, please write an email to ckcstrial@gmail.com or contact one of the centres directly and ask for the person involved in the study.

Collaborators:


Royal Veterinary College, University of London
www.rvc.ac.uk/QMH/Contact.cfm (http://www.rvc.ac.uk/QMH/Contact.cfm)
Ioannis (Johnny) Plessas DVM MRCVS
Senior Clinical Training Scholar
Queen Mother Hospital Royal Veterinary College, University of London
Holger Volk DVM PhD DipECVN FHEA MRCVS
Senior Lecturer in Veterinary Neurology and Neurosurgery
Queens Veterinary School Hospital, University of Cambridge
www.vet.cam.ac.uk/contact/ (http://www.vet.cam.ac.uk/contact/)
An Vahaesebrouck DVM MRCVS Clinical Neurologist
Stone Lion Veterinary Group, London
www.veterinary-neurologist.co.uk/ (http://www.veterinary-neurologist.co.uk/)
Clare Rusbridge BVMS PhD DECVN MRCVS
College of Veterinary Medicine, Iowa State University
vetmed.iastate.edu/front-page/contact-us (http://vetmed.iastate.edu/front-page/contact-us)
Nick Jeffery BVSc PhD CertSAO DSAS DECVN DECVS FRCVS
Professor of Veterinary Clinical Studies.

Margaret C
11th April 2012, 10:43 PM
Im disapointed that we couldnt continue but have to put him first x

Yes, we do have to put their wellbeing first.

I wondered whether I should volunteer Tommy but was told that as he was stable on his existing medication I should not change things.

So I'll do my bit by publicising the drug trial as much as possible.

Kate H
12th April 2012, 02:06 PM
Hi Karen

Sorry you couldn't continue with the trial but you have actually contributed a useful piece of information about a side-effect the researchers obviously weren't expecting. It would be interesting to know whether other dogs are affected as Charlie was, and if there is any reason for it (assuming not all dogs in the trial will get the same side-effect).

It's also reassuring to know that if a dog does get this side effect it can be dealt with simply by stopping the drug, with no lingering after-effects.

We'll see how Oliver gets on! I think one of the puppies recently diagnosed with SM (Elvis?) was put straight into the trial by Clare Rusbridge as a useful way of finding out the best medication for him - could his owner give us an update?

Kate, Oliver and Aled

Reptigirl
13th April 2012, 07:45 AM
I wish we could participate. I would put both boys in the trial.

Karlin
13th April 2012, 11:20 AM
My own opinion on participation is that I would not consider it at all for a dog with significant symptoms. Rimadyl on its own would do zilch for Leo for example and there is absolutely no way I would put him through having to be on that very low level, insufficient painkiller for two weeks of the trial. For me, that means for any dog needing medium to high level gabapentin- or lyrica- there's just no way I would consider doing this.

I think it is a good opportunity for dogs on low level doses of gabapentin, or not on gabapentin at all. For example I'd definitely put Lily forward if I could participate but obviously we can't do the clinical exam from here.

I just think dogs needing significant meds are going to withdraw from the trial pretty quickly in most cases. I know without even trying that Leo would have unacceptable symptoms within 24 hours of being just on rimadyl.

Two weeks also seems a very short time to trial a drug - I wonder why not four weeks? A lot of us find gabapentin doesn't start to work for two weeks, for example, or doesn't work til dosage is adjusted. Two weeks is incredibly short time for a clinical trial.

Kate H
13th April 2012, 12:20 PM
Karlin wrote: A lot of us find gabapentin doesn't start to work for two weeks

But conversely a lot of people on this forum (especially those with newly diagnosed dogs) have said what an amazing difference gabapentin makes within a few days. And people have also said that before an MRI is done, an immediate positive reaction to going on to gabapentin has been taken as confirmation of the presence of SM. And perhaps one of the things they are researching on this trial is finding a drug which works quickly and doesn't need the weeks or months of adjustment that gabapentin can require with some dogs. Both of the drugs being trialled are human drugs, one of which is much used for humans with CM/SM, so it would be great if a quick-acting, effective drug was added to our SM armoury. With Oliver I'm increasingly sure that gabapentin isn't an efficient drug for him, so we would have to be trying something else for him anyway.


Kate, Oliver and Aled

Karlin
13th April 2012, 12:32 PM
Yes those are good points too! :)

I am glad the trial is happening and would welcome alternatives -- though wonder if one of the drugs is actually something a lot of us already use anyway. There just aren't many drugs used for CM/SM in humans that aren't being used already with cavaliers. But there have been no clinical trials of either gabapentin or lyrica on dogs, for example.

I'll be very interested in the end result as all of us would welcome better knowledge of existing drugs or any new alternatives. :)

For most dogs where gabapentin doesn't work, the only alternatives are Lyrica or prednisone. So would be surprised if anything else already known about is tried as a replacement.

Hopeful4now
13th April 2012, 06:19 PM
Karlin, do you know anything about a drug called Normast? I think it's available in Europe.

Karlin
13th April 2012, 07:47 PM
Yeah there was a whole discussion on that elsewhere at one point. I do think drugs in that area might be useful for pain, but have a lot of questions about the company and the price they are putting on it (expensive -- the same or more than Lyrica, so why not use Lyrica) and that all the information pro the drug comes from the guy who runs the company, who seems to spend a lot of time promoting it on various websites... hmmm.

It isn't widely used at all over here. I don't now anyone who uses it for human or canine SM.

There's a possible attempt at a clinical trial in the US but haven't heard any more about it. I'd like to see one done though!

As for uses, I only think it might be useful alongside what is already being given -- it isn't a huge breakthrough in other words, it is a known area of potential painkiller from cannabinoids that some researchers are looking at.

germarey
18th January 2014, 05:33 PM
Hi

Does anyone know if Nick Jeffery performed a trial on Normast/Peapure and what the results were please.

Germarey

Karlin
18th January 2014, 08:01 PM
Not as far as a know -- or not where there are results anyway yet as far as I know. I'd love to hear if anyone knows where this stands! It would be great to have another possible treatment.

Some here have used it and found it useful, for at least a time. I know others have found it doesn't do anything. Nicki I think is aware of various people using it? And found it useful for one of her dogs. :)

Very hard to assess without a clinical trial of some sort.