View Full Version : Oliver and the RVC trial
22nd April 2012, 04:23 PM
I thought people might like to follow Oliver's progress on the RVC Clinical trial of SM medication, so I'll start on a weekly update. We've just reached the end of Week 1, during which he has been off his normal daily dose of 200mg x 3 of gabapentin and started on a once a day dose of Rimadyl, which is a pain relief and anti-inflammatory. Well, two things have happened:
1. His SM symptoms really haven't been noticeably worse, though the pattern has changed slightly. Usually, on gabapentin, he seems to have a low grade headache quite often, usually showing while dozing especially with his head on his paws, when he starts whimpering slightly. It will often apparently stop if I turn him gently on his side, but evidently his high dose of gabapentin doesn't entirely deal with it. During this week, he has had fewer of the whimpering episodes, but slightly more episodes of jumping up to rub his head hard against a low table edge or a cardboard box. He started this a few months ago, and it seems to be a jab of headache, rather than the more prolonged (though perhaps lower level) headache that makes him whimper.
2. A real plus of this week on Rimadyl is that the wobbliness in his back legs has almost entirely disappeared. We weren't sure whether this was due to his SM or to the spondylosis (osteo-arthritis of the spine) that he also has. He hasn't been on regular medication for this since it first flared up over 4 years ago, when he had metacam and crate rest for about 4 weeks. It appears so far that the wobbliness could be spondylosis not SM, since it improved almost as soon as he was put on an anti-inflammatory specifically used for osteo-arthritis. I think his problem is stiffness after lying down rather than constant pain, as that is when he staggers most. He always walks a bit stiffly - I think because that is the most comfortable, rather than that he is having a great deal of pain. I haven't discussed this yet with our vet and neurologist, but it does look as if keeping him on Rimadyl or similar could really improve his mobility.
No other side effects at all. I just have to mark where I think he is on a line scale each week, but I'm also keeping a daily diary for my own information. We've now started on Drug A for two weeks (note to RVC: if you're trying to do a blind trial, with the participants not knowing which drug they're giving to their dogs, don't supply tablets clearly stamped 'Neurontin 100mg'!!). So for the next two weeks Oliver will be back on a smaller dose of neurontin/gabapentin. I'll let you know how he gets on, if people are interested.
Kate, Oliver and Aled
22nd April 2012, 04:32 PM
Thanks for this report, Kate. I hope you can keep them up.
22nd April 2012, 06:33 PM
yes it's great that you are writing a report, very interesting.
22nd April 2012, 08:33 PM
(note to RVC: if you're trying to do a blind trial, with the participants not knowing which drug they're giving to their dogs, don't supply tablets clearly stamped 'Neurontin 100mg'!!).
Kate, Oliver and Aled
Well that made me laugh.
I wonder if there are rules against popping these 'bubble wrapped' pills out of their protective packaging?
I wonder if there is there any identification on Drug B?
I'm certainly interested in how Oliver gets on.
26th April 2012, 05:19 AM
I too am interested in following his trial.
27th April 2012, 06:50 AM
This will be very interesting to follow. I look forward to it!
29th April 2012, 08:56 PM
End of Week 2. This week has been the baseline of Rimadyl plus 3 x Drug A (100mg of Gabapentin - half the dose of gabapentin Oliver was on before the start of the trial).
The Rimadyl still seems to be controlling Oliver's wobbly back legs. We had a long pavement walk on Wednesday (about 1.5 miles) and he was unusually tired (for him!) at the end of it, and a bit wobbly; I think this was because his longer walks aren't usually just slowish walking on a hard surface but include some trotting around off-lead in a park, and the increased pace takes the pressure off his back at least for that time. After a good sleep he was fine again and not a wobble since (not much exercise either, given the British weather this week!).
The lower dose of gabapentin doesn't seem to be making much difference. He is perhaps a little bit more scratchy, but whimpering when dozing is about the same - no better but no worse, and it always stops if I can turn him onto his side. I went to the vet's to get his Optimmune prescription for his dry eye on Thursday, and she gave his ears a quick check, but no cause for scratching there. We at last seem to have got the flea problem under control, so no scratching there. I asked the vet to give me a referral to an ophthalmologist once the RVC trial is over, because I think we need to find out more if we can about what's happening with his eyes. A high dose of gabapentin and four years of diuretics don't seem to have done anything to reduce his photophobia; if anything, it's getting worse. We went up to London for our session at the RVC on a small train with strong fluorescent lights and by the time we got to the college Oliver's eyes were almost shut and he was obviously uncomfortable (it was also sunny) - as soon as he got into the more subdued and gentle light inside the college, his eyes were normal again; and this Friday (a grey and wet day) the light coming through the windscreen of a car onto where he was sitting at my feet had him squinting. An MRI might give us some information, but would need to be done from a variety of head angles, not just the mini-scan head and neck, and would be expensive (and Oliver's insurance won't cover anything to do with CM/SM). I'm hoping an ophthalmologist would be able to tell me whether any damage to the eyes (and I know he's got a problem with the mechanism controlling the movement of his pupils) is actually caused by his dilated ventricles (which we have always assumed) or whether it might have a cause entirely unconnected to his CM/SM, since neither a neurological pain blocker nor a diuretic intended to reduce the size of the ventricles seem to have any effect. I think it's going to be a Doggles summer (he does look VERY posh in them)!
We have another week on Rimadyl plus Gabapentin. Apart from the possibly useful information about his wobbly legs (and my vet agrees it would be worth keeping him on a pain killer - though not Rimadyl), it's useful just having to observe Oliver more closely than I normally do, and I'm increasingly sure that gabapentin is not a very effective drug for him. It will be interesting to see what difference Drug B makes. We have one week (Week 4) on just Rimadyl, to get gabapentin out of the system, and then start two weeks on Drug B: a round beige pill with 100 on one side (100mg) and TOP on the other - I suppose I shouldn't cheat and ask if anyone recognises them, but the RVC were so daft over the gabapentin, I'm not sure it matters all that much! I don't think knowing what it is will influence how I observe Oliver when he's taking it - I just note down what I see (though I suppose I might not have said what I have above about gabapentin if I hadn't known what it was and already had reservations about it). But my daily notes simply record 'No difference' for most days this week.
Wait for next week's exciting instalment!
Kate, Oliver and Aled
1st May 2012, 08:39 AM
Thank you for doing this Kate it is really helpful and interesting to follow the trial.
With regards to the drugs being identifiable I suspect this is for legal reasons, also most people following trials would not have the knowledge about drugs that many of us have garnered and would not therefore know what was being prescribed. From your description I think I have identified drug B, this should be good news if it proves to be effective, not only is it another drug to add to the arsenal to help pain management but it appears to be cheaper than Gabapentin. Knowing what the drug is will as you say not influence your record keeping.
I avoid pavement walks with affected dogs after having read messages from human sufferers who state that hard surfaces are painful for walking upon, aggravates symptoms so that might be why he was feeling worse? I noticed that myself with the Trigeminal Neuralgia that even going from carpet to tiled floor was far more painful.
It's really good that the wobbliness has greatly reduced - I know that the treatment algorithm suggests use of something like Metacam or Rimadyl together with Gabapentin, personally I do not like long term use of either drug but nor would I leave a dog in pain when they can be helped, I prefer Metacam to Rimadyl but it depends what works for your dog. Rimdayl is possibly easier to give as it is a flavoured tablet.
2nd May 2012, 10:33 PM
I was interested in your comment about pavement walking. He has not had any problems before, but usually I include a period running around off-lead - if we walk the 1.25 miles into town, for example, which we do quite regularly, about a third of it is through a park where the dogs can trot around off-lead, and I think that is enough to relax his back. I suspect with the other walk, which was only pavement, the temporary wobbliness was tension from having to walk relatively slowly for a longer period, without the chance to relax off-lead. Something I'll have to watch.
If we keep him on a painkiller after the trial ends, it will probably be Previcox, as our vet practice prefers that to Rimadyl as being gentler on the stomach. Given his weight at 10kg, Oliver would be on the smallest dose (57g once a day), and if it works well on his osteo-arthritis, I suppose it might be possible to reduce the dose further over time by not giving it every day, or giving it for a couple of months and then seeing how he gets on and if the wobble comes back, having another course - it's not generally used long-term. But I'm so pleased to find that something can be done to help that wobble.
Kate, Oliver and Aled
6th May 2012, 10:22 PM
This week's report, end of Week 3.
This week we've finished the 2 weeks of Rimadyl plus Drug A (which I know is gabapentin). For 2 weeks Oliver has been on half his previous dose of gabapentin, but there doesn't seem to be any obvious change in his symptoms - for good or ill. Perhaps a bit less whimpering when resting, not so many episodes of jumping up and roughly rubbing his face (though these have never been frequent). No sign of wobbly back legs, so the rimadyl still seems to be working. There is some scratching at his head, but it isn't very frequent or frantic, as if he's in pain; the lady who did his BAER test last week thought that tinnitus might be a real possibility with dilated ventricles, and I do wonder if this is responsible for his head scratching. He does move around quite a lot - from crate to floor to settee to his bed to floor... obviously trying to get comfortable but not whimpering or showing obvious signs of pain. But is this his SM, or is it a general achiness from his spondylosis?
One reason he may have seemed better this week is that we have been busy and he is always better when his mind is occupied. On Monday we travelled by train to Chester. We spent almost the whole of Tuesday at Chestergates (7 hours!), and while Aled had his scan and recovered from it, Oliver appointed himself Meeter and Greeter for dogs and humans coming into reception! On Wednesday we had a lovely afternoon walk and then travelled home to Coventry. Yesterday and today we have had longish walks - 3 miles or so walking off-lead across fields. Not a sign of discomfort while running around or engaged with people, and sleeping soundly when we come home tired.
Now we have another week just on rimadyl, to get the gabapentin out of Oliver's system before starting on Drug B for 2 weeks.
Kate, Oliver and Aled
6th May 2012, 11:05 PM
Thanks Kate -- very interesting to follow your experience.
13th May 2012, 08:49 PM
End of week 4, second week on just Rimadyl.
I think what has struck me this last week (and over the trial so far) is that two weeks on a moderate dose on gabapentin has made very little difference. The surprise so far has been the difference that an NSAID such as Rimadyl has made. Not just that the wobble in his back legs has gone, but I noticed this afternoon when Oliver was running free in the park that for the first time for ages he was trotting - even a little run - instead of the pacing that I have come to take for granted. The Rimadyl seems to have reduced the inflammation of his spondylosis and generally freed up his spine.
This week he also seems to have been whimpering a bit less often when lying flat on his tummy, and perhaps also squinting less when the light coming through the window is bright - difficult to judge, and I've been out a lot without the dogs this week, so haven't been able to observe him so much. But it makes me wonder whether his eye problem of light phobia, which seems to be related to his dilated ventricles, is perhaps caused by pressure from his ventricles causing some inflammation or damage at the back of his eyes (I know the mechanism of his pupils is either blocked or damaged in some way) and this is also responding to the Rimadyl, rather than pain from nerve damage which should respond to a drug like gabapentin. Of course I may be completely on the wrong track, but a referral to an ophthalmologist when the RVC trial is over seems increasingly a good idea.
Today we started on two weeks on Drug B. I have no idea what it is (Nicki thinks she knows but isn't letting on!), and I am looking forward with interest to seeing whether it makes any difference - if it does, of course, it will invalidate the speculation of my previous paragraph! But the important thing is not that my layperson's guesses should be right, but that Oliver should have fewer headaches. Will tell you next Sunday how we're doing at the end of the first week on Drug B.
Kate, Oliver and Aled
20th May 2012, 11:08 PM
End of Week 5, first week on Rimadyl + Drug B.
I'm not quite sure what - if anything - is happening at the moment! At the beginning of the week there was a mild side-effect of Oliver being very unsteady on his feet when first standing up - swaying slightly on all four legs. Once he started moving it got better, and after a few days disappeared. I think he's having slightly fewer headaches, but this is so difficult to tell. He's still a noisy and restless sleeper, but it seems to be more grunts and snores, not the higher-pitched whimper that usually signifies a headache. Though he does make those headache noises when it's close to the time for his next pill, so if Drug B is right for him, it may need to be a slightly higher dose than the 100mg he's on for this fortnight. He also seems a little more lively - but this may be because a staffie has just come to live next door, and as President of the Anti-Staffie League, Oliver feels bound to make his presence known!:)
So I think I'll have more idea of whether Drug B is helping at the end of next week.
Kate, Oliver and Aled
21st May 2012, 12:28 AM
Thanks for the update Kate - it's good that Oliver is better at night, it does sound like the headaches are better controlled. If this is the drug I suspect, one of its uses is prevention of migraine in humans so that is interesting. Recommended starting dosage is 5 to 10 mg/kg orally twice a day [taken from an article by Dr. Gregg Kortz - but not about Syringomyelia! so that may affect the frequency and amount of the dose]
Many of these drugs have side effects to start with making you feel a bit unsteady and dizzy, but it's good that it has settled down.
President of the Anti-Staffie League - LOL what an important role for a very special dog :)
I'm not sure if I posted before about pain signals, pain is transmitted more slowly than other sensations such as touch - hence we rub ourselves when we bump into something or get stung, and that "stops" the pain -the signal for that sensation is travelling faster. There are also distraction techniques which you can learn so that you are not so aware of pain, when out and about or concentrating on something, we are far less aware of pain. When adrenaline levels are raised that seems to dull our observation of pain, hence when you are busy Oliver seems to be better.
It is really interesting to follow his progress, thank you for keeping us updated.
21st May 2012, 11:39 AM
Yes echo what Nicki says; has been very interesting to read your detail on this trial -- thanks so much for doing this!
27th May 2012, 08:46 PM
This week's report: end of trial
Oliver finished his six weeks of RVC trial yesterday. It has been an interesting experience (at least for me - don't know how he felt about it!), and has passed without incident - no real side-effects or major ups or downs, but a couple of encouraging discoveries.
I've already mentioned the Rimadyl, which continues to deal with the problems caused - as far as we know - by his spondylosis. It's lovely to see Oliver trotting and even running round the park in a way he hasn't done for years. I went to the vet on Friday and got him a new supply so that we can keep up the good work.
The other encouraging discovery is Drug B (or more accurately, my Drug B - which drug is which is decided randomly). An eerie silence has overtaken our house - broken by the noise of Oliver gently snoring (a snuffly nose is one of the benign side-effects) - but virtually none of the whimpering that usually means a headache.:thmbsup: Just a little bit of noise and head rubbing if I'm late giving him his pill - he obviously needs to keep to the eight hours. Now that Oliver's part in the trial is finished, I've checked with the chief researcher what Drug B is, because - subject to approval from our vet and neurologist - I'd like to keep Oliver on it, at least for a longer trial period. It took a few days to start working - or for me to realise that for a couple of days I hadn't had to roll Oliver onto his side to stop his whimpering! It really seems to have made a difference, really tackled his headaches, in a way that gabapentin didn't. Apparently it is a human drug not yet generally used for CM/SM in dogs. It would be great if it could add to the range of medication available for our dogs, but obviously this won't become clear until the trial is finished and the results assessed and evaluated. Dr Plassis at RVC specifically asked me not to mention the drug by name (and those of you who can make a good guess - PLEASE don't speculate in public :thnku:) - it is of the utmost importance that the trial is blind, that people don't know what their dog is having, but simply record the reaction to the two drugs.
So no problems and two possibly positive discoveries - I'm really glad I enrolled Oliver in the trial. I think it is still possible for your Cavalier to take part - even if you live in the US, since Nick Jeffery is coordinating it there. And there are several centres in the UK besides the RVC, and only one visit is required to assess your dog's suitability; Oliver doesn't have to go back. I posted information about the trial and the centres when I first contacted the RVC - I think you could find that if you search for 'RVC Clinical Trial'.
Next job is searching the internet to find a reliable online pharmacy that can supply Oliver with Drug B at a reasonable price...
Kate, Oliver and Aled
27th May 2012, 09:31 PM
Wow! It's great they were willing to give you the drug name. Glad you found a better option for Oliver.
29th May 2012, 12:25 PM
Dr Plassis at RVC specifically asked me not to mention the drug by name (and those of you who can make a good guess - PLEASE don't speculate in public :thnku:) - it is of the utmost importance that the trial is blind, that people don't know what their dog is having, but simply record the reaction to the two drugs.
Yes that's why I didn't post what I thought the drug was, it would spoil the trial.
I'm so pleased that Oliver is doing well and that the new drug works for him. hope you've managed to find a supplier. I was expecting it to be a bit cheaper than Gabapentin so hopefully that is the case.
Any idea when the trial is expected to be completed?
29th May 2012, 01:11 PM
I realised you were being responsible, Nicki, and I'm really grateful. Yes, I've found a reliable online pharmacy (which I've used for Oliver's gabapentin for several years) who can supply the generic version of the drug at a cheaper price than gabapentin, which is a great relief.
In his email to me about the new drug, Dr Plassis, the lead researcher, wrote 'After the end of the trial (in a few months hopefully)', so I think there is still time for people to take part, as the trial only takes 1.5 months/6 weeks. Then they have to evaluate the results, so I would think autumn before they publish them. I hope other dogs with dilated ventricles from CM will find it as useful as Oliver has done - it would be so good to have an effective new weapon in our armoury.
Kate, Oliver and Aled
30th May 2012, 12:47 AM
I am so pleased the trial has proved worthwhile for you and Oliver
You truly deserved to get some benefit as there are not many people that would have made such an effort, given up a whole day, travelled so far by public transport with two dogs, to support a research project as you did.
Thank you because this may help a great many of our dogs in the future.
30th May 2012, 11:39 AM
Thanks Margaret - but there speaks a car driver! Getting to the RVC was one of my less complicated journeys, much helped by your lift. Getting to our favourite camping site in Norfolk involves a taxi, 2 trains and 2 buses, dragging a trolley full of camping gear and with 2 dogs, so a bus, 2 trains and a short walk without any luggage was a doddle!
Apparently Drug B deals with 'intercranial hypertension' - which is an excellent description of Oliver's headaches (as far as I can guess). Not the more obvious SM pain of sensitivity to touch, yelping and so on - what I would call a 'soprano pain'; Oliver's is a lower grade but frequent 'bass pain', like a tension headache in humans, which seems to derive from his CM - so the drug could potentially be helpful for a lot of dogs. But Oliver is only one dog in the trial, and the drug happens to have worked for him, so it will be interesting to see what results come in from all the other triallists.
Kate, Oliver and Aled
30th May 2012, 02:48 PM
Kate, do you know if any temporary vision loss occurs as a result of the intracranial hypertension?
30th May 2012, 07:30 PM
Yes Rod, Oliver has quite serious photophobia, due to either interference with or damage to the mechanism of his pupils. It will be interesting to see whether Drug B helps with that, by reducing the pressure behind the eyes. The lady who did his recent BAER test was also interested in the possibility that pressure might be affecting his ears. I've felt for a long time that Oliver's problem was pressure from his dilated ventricles rather than actual nerve damage due to his syrinx, which may be why a neurological pain blocker like gabapentin wasn't terribly effective at dealing with his headaches. Before the trial he was on the maximum dose of gabapentin and still getting headaches - at least we have assumed that his whimpering in his sleep when he is lying on his stomach is the sign of a headache. If I roll him gently on his side - ie move the pressure point of his ventricles away from the front of his skull - he immediately stops whimpering. Like human tension headaches, which tend to be behind the eyes and in the forehead.
Kate, Oliver and Aled
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