Xadago

[rhenry45]

I started using this new drug recently. It is awesome! It extends the life of sinemet and totally knocks out any dyskinesias. It is a miracle and I hope all who are suffering with PD get some. I got it from gold pharma and yes they will ship to USA.

[rrunk7]

Where is gold Pharmacy??

[Moodyblue]

So you've had PD for only one year but were already suffering dyskinesia?

[Bailey_Texas in reply to Moodyblue]

Good morning Moodyblue,

This reads as a advertisement. This person just joined a few days ago does not post any thing about himself. His use pf USA does not ring true most folks just use US.

[Moodyblue in reply to Bailey_Texas]

My conclusion too Bailey. Nothing to get excited about!

[annmariebaird in reply to Bailey_Texas]

Thanks for catching this!

[TheresaCurley in reply to Moodyblue]

Moodyblue being diagnosed only a year ago doesn't mean you had PD for one year. I was just diagnosed last week but have had symptoms starting more than 5 years ago, just not distinguishable enough to be diagnosed.

[Moodyblue in reply to TheresaCurley]

I am well aware of that. I didn't get a positive diagnosis for almost 6 years of symptoms. That doesn't mean I didn't have PD though, just because it was undiagnosed. RHenry, on his profile, says he has had PD for a year - hardly long enough for dyskinesia to be a major issue I would have thought.

[Juliegrace in reply to Moodyblue]

My dyskinesia started after less than 4 months on 200-300mg of carbidopa/levodopa. My mother has PD also and did well on it for 12 years before noticeable dyskinesia. I participate in a lot of research so have seen many top neuros. All are surprised by how sensitive I am to such low doses, but it's not unheard of.

[Moodyblue in reply to Juliegrace]

Might I suggest you start a new thread on this - that way everyone will be notified of your post and you should get some responses.

I am wondering whether there is a chance that you are under dosing rather than being sensitive ... probably not since you've seen many top neuros but it was just a thought ....

[Pete-1 in reply to TheresaCurley]

Diagnosis January 2007 but I think my PD started in 1997 with the often very early sign being the loss of sense of smell. So 10 years from first symptoms resulting in making me curios up to a diagnosis 10 years later..

[HILLARYB in reply to Pete-1]

mine started with my neck locking when i bent down, then twitchy thumb. I have toe scrunchy and numbness and I take 1/2 carb/lvo every 2 hours which is silly but anymore and I am like a drunk.I have left all my friends because if I hear get on with your life from someone healthy I will shoot myself. I am just not coping with it...after 7 years I am defeated. There is nothing better then DBS>?Fuck that! I am so tired if I take too much or shaky if I take too little. I can be a real downer before I smack myself to grow up. Sorry about your smellers. It is all bad, there's nothing good and no cures. So tv, is boring, and my dog hates me and I chose you to dump on since you can not smell poop.

HA!

[rhenry45 in reply to HILLARYB]

You have a neuroma in your foot that is causing the toe scrunch effect. Talk to a podiatrist about it and they can fix it

[Sedona]

From what I read online, Xadago is not approved by the FDA for use in the US.

I believe it is approved and being used in Europe, though according to the list of side effects, I can't see why....worsening of existing Parkinson's disease????

The most common side effects with Xadago (which may affect up to 1 in 10 people) are insomnia (difficulty sleeping), dyskinesia (difficulty controlling movement), somnolence (sleepiness), dizziness, headache, worsening of existing Parkinson’s disease, cataract (clouding of the lens), orthostatic hypotension (drop in blood pressure when standing up), nausea (feeling sick) and falls. For the full list of all side effects reported with Xadago, see the package leaflet.

Xadago must not be used in patients with severe liver problems, in patients treated with pethidine or other MAO inhibiting medicines, or in patients with certain conditions affecting the eyes. For the full list of restrictions, see the package leaflet.

[Serenity_finaly-1 in reply to Sedona]

Okay, okay you sold me on it Stop the high pressure sale.

[mauvemark]

Blast! I just googled "Gold pharma" Double blast. Thanks for the heads up, people.

[Abby1212]

What's it called??

[pen1]

There seems to be a bit of confusion re this drug. Maybe i can shed a bit of light.

By the most astonishing co incidence I was rung less than 2 hours ago by a Parkinsons Nurse (normally no contact from one year to the next.) The purpose of the call was to offer me an appt in three months time when they will be able to give me 'a very effective new drug' - Xadago! She said it would replace Rasagaline (Azilect) and is much more effective, lasting much longer in the body - up to thirty hours . It has been approved by NICE and will begin to be widely available in the UK over the next few months. I've been in this game for long enough not to get over-excited but it's worth giving it a whirl -nothing to lose andn potentially quite a lot to gain.

[TheresaCurley]

I believe this is not yet FDA approved in the states which means our insurance would not approve the payment for it.

[rhenry45]

I have bad PD. Cannot walk and constantly fall without meds. Yes, I had dyskinesia as I am young and l dopa affected me this way, mainly foot curling and a little arm movement. This drug is a miracle and a lifesaver. Nothing else I found has worked and I have spent thousands looking for the best solution. This xadago extends the ON time by a lot. Not sure exactly how much but at least an hour per dose of L dopa. Three times a day I take 100 mg of Macuna dopa from Source Naturals and 60 mg capsule of Dopa Macuna from Now foods along with 25 mg tablet of Carbidopa ( Lodosyn) Xadago I take as 100 mg tablet once in morning. I am getting ready to play Golf. That is how good this works. Before I was stuck inside hating life. This post goes out to anyone wanting their life back. It takes about 12 days to get your order delivered to USA so if you want it you need to start today.

It is also neuroprotective and has a lot of other benefits too. Get it regain your life like I did.

[Moodyblue in reply to rhenry45]

I wish we had had this information at the beginning of the thread - it might have avoided misunderstanding. Your symptoms sound unusually severe if you're only one year into the disease. Being young doesn't necessarily cause L-DOPA to behave this way - I was 48 when I began taking it and still don't have severe dyskinesia - just a fairly mild form when I'm switching off. While I am in no hurry to try Xadago I am glad it gives you relief and hope that it continues to do so.

[rhenry45 in reply to Moodyblue]

You are lucky. Not all people are so lucky.

[park_bear in reply to rhenry45]

rhenry, have you already tried Azalect and/or Selegiline? If so, is this better than either of those?

Also, did you have symptoms prior to your diagnosis a year ago?

Thanks...

[rhenry45 in reply to park_bear]

I have not tried those two products. Those I hear have some negative effects so I avoided them. Yes. I did have symptoms. I had a right leg that was dragging badly. I did not even know it was related to this awful disease. One day after about 6 months of that I got out of bed and I could not walk. It was that sudden. Never will I forget that day.

[park_bear in reply to rhenry45]

OK. Based on my experience, by the time you get to leg dragging you have actually had PD for many years. My first symptom was a couple of toes cramping. Then I would get shakes in my arm on that side, but only when stressed so I figured it was nerves. Then my foot on the side started dragging and I knew it was time to get to the neuro.

[rhenry45 in reply to park_bear]

Either way it sucks.

[pen1]

Just a thought re side effects. It's a shame not to give a potentially beneficial drug a try because the list of possible side effects is frightening. ALL PD medications have potentially ghastly side effects. The trick is to find ones that suit you and whose side effects you can tolerate. All the possible side effects listed for Xadago apply to nearly all PD medication. And they are only possible - not inevitable. Different people react to chemical substances in different ways - I get far more severe 'side effects' from drinking a cup of coffee than from taking 1000mg of madopar a day. Yet a couple of Sinemet sent me out of my head and the wrong dose of rotigotine turned me into a hyperactive obsessive nut. It's a suck it and see situation.

[999---666 in reply to pen1]

sounds like, to me, they might of found something that gives you more bang for your buck, but just as noxtious as conventional drugs. some kind of progress, unless you find you have to up dosage more frequently. if it's neuroprotective, that's real progress.

[Moodyblue]

If you want to be taken seriously and be a respected member on this site it might be a good idea to avoid being rude to someone you disagree with.

[Moodyblue in reply to Moodyblue]

The post that I was referring to above has been deleted.

[Boyce3600]

In response to your comment about a Sinemet sending you out of your head: my husband has had trouble with it ever since he started it. Can you elaborate about what exactly it did to you? Do you mind? thank you!

[pen1 in reply to Boyce3600]

Don' t mind at all. Sinemet was the first l-dopa drug I tried. Within half an hour of taking the first dose I felt very confused and couldn't follow any conversations, the confusion got worse with each dose and I also felt so tired I couldn't stay awake. Although it helped me move more fluently I lasted 2 days, getting more and more confused, before giving it up. About 6 months later I was given a drugs challenge using madopar (this involves being given a huge dose of an l-dopa drug in hospital to see if you respond - it's one of the ways to differntiate PD from other forms of parkinsonism). I was very wary but it worked like a dream - I got off the bed and danced through the hospital with doctors and nurses running behind. It has never caused any sort of cognitive problem and I now take between 800mg - 1000mg per day.

Is your husband also taking agonists - eg neupro patch? I found that anything higher than 6 mgs gave me aural hallucinations and also made me very obessessive and impulsive.

[mymomhaspd in reply to pen1]

my mom gets severe dyskinesia half the time and if the dose isn't enuf, she is sleepy with less movement ability .. don't even know what to do . Its such a fine line we walk .. so thinking of giving her a ton of levodopa to her in a single dose is scary

[park_bear]

Looks like it is a dopamine agonist with all that entails:

Under adverse effects, Vascular disorders, Orthostatic hypotension is listed as "common"

details here: medicines.org.uk/emc/medici...

I would advise anyone taking a dopamine agonist("DA") to get it via a proper prescription from an MD, so if they subsequently suffer some devastating consequence they are in a position to sue the manufacturer. Yes, the downside of DAs is that bad, although some people do well on them.

[park_bear in reply to park_bear]

oops, I was wrong, it is an MAO-B inhibitor. I wonder if it is better that the others and if so, why.

[park_bear in reply to park_bear]

hmm...

"Safinamide is an oral, once a day adjunctive therapy for any stage of Parkinson's disease (PD). It is a unique molecule with a novel dual mechanism of action based on the enhancement of the dopaminergic function (through potent reversible inhibition of MAO-B and of dopamine uptake) and inhibition of the excessive release of glutamate."

The FDA refused to approve saying they wanted study of abuse potential and apparently have now changed their minds.

[rhenry45]

All I know is it works and I am much better than without it. It is expensive ( about $150 for 30 day supply) Get the 100 mg tablet not the 50 mg. Just thought I would help everyone on this forum by sharing my experience with it. Also, the ON time is better. What I mean is when I am ON the walking and balance are better at that time. This fact let me play golf today and I have not played all summer. I have been taking this new product for about 1 week and all is good. No side effects that I could notice and I am very sensitive to all drugs.

[mymomhaspd in reply to rhenry45]

my mom gets severe dyskinesia half the time and if the dose isn't enuf, she is sleepy with less movement ability .. don't even know what to do . Its such a fine line we walk .. how is this drug better ? Please shed some light - much appreciated .

[rhenry45 in reply to mymomhaspd]

Xadago main ability is it reduces dyskinesia by binding to glutamate receptors. It also increases the effectiveness of sinemet. It works great and you can get it online with no prescription at goldpharma.com

[Chicafromchitown in reply to rhenry45]

Do you know if it can be purchased at any other pharmacy in USA

[rhenry45 in reply to Chicafromchitown]

sadly it cannot be purchased in USA until it gets full FDA approval. That will take maybe another year or so. I think this drug is a miracle. It has improved my symptoms so much. I would recommend you get it asap.

[froggatt55]

Thanks Rhenry45. I am waiting for a friend in the UK to start using it. It reminds me of when I started using Azilect a umber of years ago. he it is still working for you