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Brian M
8th October 2011, 09:18 PM
Hi

As you all know Daisy is off Frusemide and on Zitac 3 x 50 mg and thanks to Sandra
I will get in touch with Viovet .I collected a prescription last night for 90 tablets 100mg
so she will have 60 days supply in so thats that sorted and thanks to all who helped
and pushed me that way .One other question pls she has been on Zitac for two weeks
now and what am I expected to see ? She seems no different then when she was three
six or twelve months ago so I am a bit lost as to me she really didnt have any symptoms
before apart from a scratch if I stroked down her right ,so how do I know if these tablets
are working or having any effect at all .

Pat
8th October 2011, 10:18 PM
Brian,

I think that the answer is that you will likely not see anything different and you won't really know if the drug is indeed helping to slow the progression of the disease. Since Daisy had very few and very subtle symptoms, not even needing to start any med such as gabapentin for pain symptoms, I'd expect that you wouldn't really notice anything different. But, Brian, this is a GOOD thing.

Since there has never been any kind of double-blind, large scale trial with the CSF reducers, we must just assume that there is enough information to suspect that these drugs MAY be helpful in slowing the progression. So we just go on this with a little faith. Since this drug has a low risk of side effects, we simply look at the risk/reward analysis and believe that the drug may very well be helpful and likely won't hurt, so we go with it. You looked at the risk/reward analysis with furosemide and decided that the risk was too high to stay with that drug. You are making good decisions, IMO.

I am pretty OCD myself, so I understand your need to analyze every aspect of Daisy's medical situation, but please don't drive yourself crazy. You have access to good specialists, and you are doing a great job.

Pat

Kate H
8th October 2011, 10:19 PM
I would guess that in Daisy's case the CSF inhibitor (Zitac) is aimed at prevention rather than curing symptoms - preventing the situation getting any worse by reducing the amount of CSF. So it will presumably maintain the status quo, as she has no obvious symptoms. If Daisy starts showing symptoms in spite of being on Zitac, that's when you need to go back to your neurologist.

Kate, Oliver and Aled

Pat
8th October 2011, 10:26 PM
Forgot to say - even if you do another MRI in a year or so, you still probably will not know for certain if the CSF reduction has helped to slow the progression of the disease. There just isn't enough information yet with no trials. But I'd still opt for giving the drug because it makes sense to do so.

This is very much like the times I have started Cavaliers on enalapril when there are significant changes in the heart but before overt heart failure. They all seemed to do well and they all lived to their mid-teens. BUT there is no way to know if things wouldn't have been exactly the same had I not started the drug. And there were drug trials in this situation.


Pat

Brian M
10th October 2011, 11:22 AM
Hi

As you say without clinical trials we will never know if Zitac worked or not ,but what I do know is that
its a comfort and so reassurring to have help and guidance from ladies like you two .


So a BIG thank you to you both .:flwr::flwr:

Brian M
22nd October 2011, 08:17 PM
Hi

I have been cleaning up in the garden and I forgot:( to give Daisy her
Zitac at 2.00 pm what should I do .? Give it her and also her 10.00 pm
as normal or leave it out ,she is on 6 am,2pm and 10 pm.:confused:

BrooklynMom
22nd October 2011, 09:31 PM
I have done this with Brookyln with her Gabapentin that she takes 3 times a day, and I have always felt so bad! Usually if it is before 5 pm (I usually remember at 4-ish if I do forget), I give her her second dose when I remember and her 3rd dose as scheduled. It does leave them a little closer together than 8 hours apart, but this has worked for us.

Gabapentin is a different med though, so I don't want to give advice on that...but I am interested to see what others have to say.

Kate H
23rd October 2011, 04:13 PM
I shouldn't worry too much, Brian. I don't think missing the odd dose will make much difference, especially as Daisy has been on Zitac for several weeks so it should be working OK. That middle of the day dose is so easy to forget. I have a combined pill box and alarm, which gives me 10 and then 5 minutes warning and then a long buzz; I set it for 7-8 hours after Oliver has his first dose of gabapentin in the morning. If we're out all day I take it with me - you could take it out into the garden. There are probably many similar things on the market, but mine was made in Liverpool! The manufacturer is BML Liverpool L24 9WD - you could find a phone number for them and ask where you could buy their 'Electronic Pillbox with Timer and Alarm' - I bought mine from a man who comes round regularly selling at the door - he lost his job and I try to buy something from him from time to time.

If I do forget Oliver's gabapentin, I tend to give it to him as soon as I remember, even if it's 3 or 4 hours late, but that is a bit different to a CSF inhibitor, because he can start a headache if he doesn't get his daily dose. I wouldn't think that one missed Zitac would have such an instant effect.

Kate, Oliver and Aled