Is anyone on Xadago?

[Jean Mellano]

this drug hasn’t been out for too long. My MDS suggested it for me. It is supposed to enhance the c/l and have less off time.  It also may help my fatigue.  Anyone using this?

[Roseanne]

I started xadago with free samples from my doctor but then found out that my insurance wouldn’t cover it because it was a new drug. It would have cost me $2300 a month. I wasn’t on it long enough to notice a difference.

[Jean Mellano]

roseanne, thanks for sharing.  i think i will have to pass on it since medicare will NOT cover it.  it is a shame since it does sound promising.

[Stephen]

Hi Rosanne. Ive been on it for 9 months or so, replacing Azilect. Is always so hard to tell what makes a difference when you are on multiple meds and have so many other things going on in your life. If I had to guess Id say I am probably a bit better for it. Less Dyskinesia I think but its no wonder drug – for me anyway. All helps though hopefully…  It took 2+ months to settle down after I changed.

Fortunately for me I live in Australia and our medicare does cover it.

 

[Jean Mellano]

Stephen. Why did you switch from azilect to Xadago?  I am appalled at the drug situation in USA, so expensive and if it is a new drug most insurance does not cover

[Bob Hodgson]

My neurologist started me on Xadago 2 weeks ago. I’m going to give it a 30 day try before I decide to continue or not. So far I’ve noticed that my tremors are down but it seems that other non motor symptoms are “worse/different”. I noticed that I’m clenching my jaw which I did not do before and that even though my hands show no tremors but my legs move more. I was hoping to minimize off time but have not yet noticed any change there, yet. I will keep you posted in a few weeks.

[Jean Mellano]

thank u Bob.. it seems like we must have to trade one symptom for another 🙁

[Gwendoline Jakins]

My husband has been on Xadago since  May.   And yes, my husband, who has severe apathy, was much improved.   He’d been on the Neupro Patch for 6 years and that was amazing as far as his apathy was concerned.. Like flicking a switch.  He was initially diagnosed withLBD (Lewy Body Dementia).  He was lying on the bed looking at the wall.  Levadopa didn’t do much. They tried the Patch and within a few weeks he was back to normal.  It’s now not working, so apathy is back.    Xadago hasn’t worked as well, but he has had PD for 6+ years.  Have you looked at the B1 protocol.  Works wonders for some.

We are trying B1, plus magnesium, B12 and 6 and Mannitol.   I think he’s improved more since starting these.

PS We are in Australia.

[Jean Mellano]

gwendoline, it seems as though Australia and Europe are way ahead of USA in terms of affordable and effective treatment options. I am on neupro, not convinced it is helping me… i am on 6mg dose. i tried B1 protocol for a fe months, but they were horse pills and i would gag trying to take them.. Also, taking magnesium.  i am so weary of trying to find that magic combination of meds/supplements to alleviate my symptoms

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