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

[Mike P]

Hi Jean- I have been on generic Azilect for 2+ years. I have never noticed an improvement but I continue to take it since I have no side effects and it may possibly be neuroprotective in some capacity. My MDS gave me some samples to try for Xadalgo to see if it helps better than Azilect. I am still debating if I want to try to make the switch since I would have to stop Azilect for a minimum of two weeks first and insurance is an unknown. If I decide to experiment I will call the pharmacy first and see what the price difference would be. Hopefully they can check with insurance before they have a script. PD patients especially need a pharmacy price checker option since the never ending experimentation has so many options.

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