Safinamide?


#1

Hi All,

I've been experimenting with Safinamide (Xadago) in conjunction with Madopar (Co-beneldopa) on and off, for over six months now. I think it may reduce length of switch-offs. But it does seem to increase slightly painful Distonia (I'm not sure). From my tests with this drug there's a lot of conflicting evidence on the merits of it.

My prescribed intake of Madopar is now 5 x 187.5 mg per plus 250 mg CR at night. The length of time of my switch-offs has increased recently as have frequency of them. My level of akynesia during S/O s has also increased considerably. These changes are happening, as far as I can ascertain, with or without the Safinamide.

I'm going to try a longer period, say six months, on the Safinamide, but if things clearly get worse, I'll drop it.

Fighting back, in any way I can is positive.

Does anybody else have experience of the drug?

Jules77


#2
You could ask Gus I think he was prescribed this new drug. BB xx

#3

Thanks BB, 

Hope you are still benefitting from the dbs.

Back on Safinamide for eight days now. Difficult to say if there is any improvement. Akynesia, I feel has increased? A bit scared of falling again. One lot of stitches is enough (taken out yesterday).

Are you out there Gus?

Jules77


#4
Hi mate your welcome and I am doing great xx

#5
Yeah I'm still here had a bit of a bad time with my 5yr assessment dsystonia kicked in my neck shoulders legs stopped working but nearly back to my old self thanks to gp put me on diazepam for muscles to relax. Plus sunshine

#6
Having wetroom and stair lift put in as well bit full on at mo.also had to re -apply ├Ęsa had help pdsw thank god

#7

HI gus,

I have had neck pain for most of this year and was putting it down to too much pc. Finally went to docs and he prescribed diazepam 2mg to release tight muscles at the skull base. I took one and the next day felt crap. Not sure if it was the d'pam but never took anymore.. Done some exercises and removed a pillow and massage the tight muscles myself  and also used a tens machine ,things have improved considerably... , but the pain was unbearable at times.I think one of the main problems is that we stop moving parts of our bodies that hurt, which in most cases make it worse. I make sure i turn my head everyday as far as i can, Haven't managed to get it full circle yet, but will let you know when i do.I also exercise every morning plus have treadmill , exercise bike and plate vibrator  all of  which i use regular. I still get problems with pain in my joints at times despite the excercises which annoys me. But if i can improve things with excercise rather than drugs then thats what i do. I first noticed pd symptoms(hand tremor) in 2006 and was diagnosed in january 2007 age 50yrs . I keep myself busy and still drive a car and  a motor boat (sea) which  use for fishing with  mates. and still repair engines etc and have an allotment and still manage to go beach fishing all year round plus diy. I think that if i had not continued to exercise then i would not be doing any of these things. whenever i feel that meds are not performing i put myself through some exercise and usually feel better.