Xadago (safinamide)

[Joynb]

My neurologist recently prescribed this drug, in addition to my ongoing levodopa (825 to 925 mg per day). This has lead to the elimination of off times and I have been able to reduce my levodopa, currently to 625 to 725mg per day. I believe I may be able to achieve further reductions.

Does anyone here have experience if this new drug? We’re you able to change your levodopa dosage?

I experienced a major life change at the same time I reached the therapeutic dose of xadago. The associated reduction in stress probably also had an impact on my symptoms.

I am keen to identify how much change can be attributed to xadago.

[sprildiver]

I have just had xadago prescribed and it made a difference from day one. My major symptom is tremor

I kept on taking my ropinirole as well. Going back to consultant after one month.

[nelo23]

I was going to increase my Rytary C/L but not needed since I added xadago instead.

[PDGal4]

I am curious as to experiences with Xadago as well. My neurologist prescribed to replace Azilect and I put a question to this forum months ago with limited responses (which I attribute to not much experience with this drug--it is new and expensive). I never made the switch, but do have an appointment with him next week and would like to revisit.

[4000Nights in reply to PDGal4]

Does your neurologist understand that Azilect is not primarily for symptoms..; it slows progression, where Xadago is for symptoms. If you have been on Azilect since early diagnosis and have had minimal progression DON'T stop taking it!

[PDGal4 in reply to 4000Nights]

Thanks for your response. I have been on Azilect since 2014, began taking 2 years after diagnosis. In my initial research, I read that Azilect (rasagiline) is a non-reversible MAO-B inhibitor and Xadago (safinamide) is a reversible MAO-B inhibitor, but my unscientific brain could not absorb the difference. I did think both worked similarly in slowing the breakdown of dopamine in the body.

I cut and pasted this from some site, but don't recall where: " In summary, in regular clinical practice, safinamide reduces motor fluctuations (improves OFF time, reduces dyskinesia) and improves UPDRS part III score. In patients taking another MAO-B inhibitor who still have uncontrolled motor fluctuations, switching to safinamide may be of benefit, though this result needs to be further verified in randomized clinical trials."

But I am of the 'if it's not broke, don't fix it' mentality, which is another reason I haven't switched. I declined participating in a clinical trial I was accepted into as it required stopping Azilect and I was leery of doing so.

Again, appreciate your input!

[4000Nights in reply to PDGal4]

Thanks... but i agree, if it not broke..........

[TL500 in reply to 4000Nights]

Hi 4000Nights, I just saw your reply PDGal4 re Xadago verses Azilect.

Could you tell us the difference like how each work and why Azilect slows the PD progression and why Xadago doesn't please?

Thanks.

[tomatera]

I’ve taken xadago for a year. I have had very few off periods now. My thinking is clearer and faster, my balance is better, my tremors much improved. Overall a big improvement for me. The only other drug I take is c/l. It seems I could go down some with the c/l and I have at certain times during the week with no ill effects. One thing that has happened is I forget to take my c/l at the prescribed times because I don’t get that off period feeling anymore.

It’s an expensive drug, but my insurance takes care of most of the cost and world meds the maker offers some copayment assistance. The company gives drs samples. You would know in a months time of taking samples if it works for you.

[Joynb in reply to tomatera]

I am interested in your improvement in balance. Dizziness and poor balance have been my main impairments for years now and both seem to have gone. I have used a walker outside for four years now but don’t expect to need it much longer.

[PDGal4 in reply to Joynb]

This bears thinking about. I do have bouts of dizziness and my balance is getting worse. Were either of you, Joynb or tomatera, previously on Azilect?

[Joynb in reply to PDGal4]

I tried Azilect briefly, but it left me sleeping all day and awake all night.

[marnegro]

Hi Joynb, Off periods are having me nuts! I’m looking to something may help and it seems Xadago could be an option. I would like to ask you how long have you been with the disease? What’s your off periods were like? Could you still walking ( or at least shuffling) in the off periods? I’m a PWP for 14 years and I can barely walk or make few steps or keep doing anything other than sit or lay down in the off periods. I go from 80 % to be functional in my On periods to the other end to be 20 % functional in the off periods. Your reply would be greatly appreciated. Thanks!

[Joynb in reply to marnegro]

Greetings Marnegro

I was diagnosed 6 years ago with non tremor PD. Most of my impairment came from dizziness and poor gait and balance. Up till December I was taking about 1000mg per day of levodopa, mainly stalevo two hourly. I had minor off times on this regime. Principal off symptoms bring slowness, stiffness and feeling very unwell. In December I commenced Xadago and, as outlined in my original post, my world has improved remarkably. I have reduced total dosage to 700mg, now 3-4 hourly. Off times are almost obliterated. I have never lost the ability to walk, using a walker outdoors. Except for one morning when my efforts to walk down our hallway resulted in shuffling backwards in the wrong direction. Hope this is helpful.