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Jangobie
23rd January 2013, 17:26
We have now seen our neurologist and have found out that my husband Eddy has respiratory onset ALS. Reading up on the symptons of this type of MN it is exactly how his started. We do not know how this will progress so like everyone else it is a wait and see, stay positive and enjoy each day.

He has been given Riluzole, I have tried to read a bit about the side effects, if any, the neurologist said that there are minimal side effects and he has been taking it almost a week but has not felt any side effects, the other medication he takes are for diabetes, high blood pressure, tramadol and amitriptylene. So will keep our fingers crossed. Has anybody come across any side effects we should be looking for?

Best regards to everyone and hope that you are all keeping as well as possible.

Diane

Rory
23rd January 2013, 18:09
Hi Diane
I have been on Rilizole for about 18 months and no side effects.
When prescribing other drugs I find the local GP very helpful in looking up possible reaction to other drugs and past history on medical records.
Best wishes to you both.
Rory

pete
23rd January 2013, 18:25
We have now seen our neurologist and have found out that my husband Eddy has respiratory onset ALS. Reading up on the symptons of this type of MN it is exactly how his started. We do not know how this will progress so like everyone else it is a wait and see, stay positive and enjoy each day.

He has been given Riluzole, I have tried to read a bit about the side effects, if any, the neurologist said that there are minimal side effects and he has been taking it almost a week but has not felt any side effects, the other medication he takes are for diabetes, high blood pressure, tramadol and amitriptylene. So will keep our fingers crossed. Has anybody come across any side effects we should be looking for?

Best regards to everyone and hope that you are all keeping as well as possible.

Diane

hi Diane,

just wondering what the hubby is taking for his high BP, only that was picked up by my respiratory consultant and he changed mine as the one I was taking actually affected my breathing.

Pete

Terry
23rd January 2013, 18:32
Hi Diane;
There are quite a few possible side effects but most are obvious. Just make sure he has regular blood checks for liver and kidney function. I have been on it for three years with no problems.
love Terry

Arthur
23rd January 2013, 19:36
I have been taking Riluzole for over 9 years with no side effects.
I don't know if they do any good but I will keep taking them.
Initially I had liver and kidney function blood tests every month, then at three month intervals and now it's yearly,

Arthur

Jangobie
24th January 2013, 14:46
Thanks everyone for the replies so far so good and no side effects.

Our neurologist insisted that he have a blood test for liver function before he started and then every 3 months afterwards.

Pete he is prescribed Ramipril 10 mg and Amlodipine 5 mg we are seeing our GP next week so will ask him to check - he has been very supportive.

Hopefully having a second ventilator delivered today which will make it easier for Eddy so when he needs to use ventilator during the day I don't have to bring down the Nippy or he doesn't have to go upstairs (which he tries not to do). Fingers crossed that it does arrive it will make life easier for him (and me_.

Thanks again for your input. Best wishes to you all.

Diane

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