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shaky deb

Apokyn

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Hi Mark

I love that you answer the questions on this forum.  You see both the patient and professional view and I think that gives so much value to the answers.  

I am in my early 50's and was diagnosed 8 years ago. I am having sudden off times.   I am currently on Sinemet, Ropinerole & Amantadine.  My doctor recommended I try Apokyn.  I searched but found no posts about about on this forum on Apokyn.  What is your opinion?

Thanks!

drm

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Apokyne is a great product. The only downfall to it is that it is an injection. It is a quick injection, but other than that, I think it is a wise choice if you're dr thinks it is right for you.

There is some good news on the horizon. Cynapsus pharmaceuticals is in a phase 2 study, which means the drug may be out in 2016, of an oral form of Apokyne.

Here is the statement I received when I contacted the company:

 

Cynapsus’ APL-130277 drug candidate is the only oral formulation of apomorphine for the treatment of OFF episodes. APL-130277 is a thin film strip that a Parkinson’s patient can place under their tongue when an OFF episode is starting. If approved, APL‐130277 will provide patients with a convenient and more tolerable alternative to multiple daily injections. As a new means of delivering an approved drug, this clinical stage project is expected to follow a 505(B)(2) regulatory and clinical path which is expected to culminate in a New Drug Approval application in 2016.

Hope this helps and keep me posted

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Thanks for that information.  I am going to try the shots and see if it helps. It takes a while to get trained and set up with everything I need but I will update once I am on it.

Have a good Thanksgiving.

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Miracle,

I am not sure when it will be available, but I will let you know when I hear something.

I hope this helps and please keep me posted.

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I have been using bit and it works great. It is an injection which really too bad.

Unfortunately I am having one of the side defects Shortness of breathe and will probably have to stop it. I am really bummed out  because it was really helping. 

Mark -

how safe would it be to use it for special occasions where I really dont want go be off

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Noah,

In a direction situation it should be fine to use the Apokyne. I would also like to let you know I found a pharmacy that can compound Apokyn generic (Apomorphine) lozenges. I think this might be what you are looking for. Here is the information about it and a phone number that you can call to see if they can bill your insurance. This is a mail order product so, you can contact a local compounding pharmacy near you to see if they can do the same thing.

Apomorphine Compounded
https://www.cfspharmacy.pharmacy/human-medicine/apomorphine-compounded?gclid=EAIaIQobChMIm-_-4_uQ3QIV3LbACh20BQn8EAAYASAAEgJ5-vD_BwE

I hope this helps and please keep me posted.

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What do you mean by ot being directional 

i dont mind the shots st all 

I would like to keep taking it but with the SOB which is listed as a side effect I don’t knew a if it is safe

 

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Noah,

I'm sorry, it was a mistype. I meant to say in this situation it should be fine to use the Apokyn. 

In a occasional severe "off" period it should be fine to use it. Unfortunately, with the side effects you are having I wouldn't recommend it for daily use. 

There is also no way to combat the shortness of breath. I know it stinks when you find a product that works and you can't take it because of the side effects. The lozenges may be better for you.

I hope this helps and please keep me posted.

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do you really think i could take the lozenger would be worth trying.

I was hoping to get the pump that is inserted sq(when it becomes available) but they use apokin in that pump dont they)

So if i had side effects from the injections then I should assume that wouldnt work for me right?/ 

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Noah,

At this point  I think the lozenges would be worth a try.

The pump will use a Carbidopa/Levodopa gel. It is in a "cassette" which is placed in the pump and will release the medication throughout the day. Depending on how much medication you need, a cassette can last as long as 16 hours.

So the good news is that you can use the pump because it does not contain the Apokyn.

I hope this helps and please keep me posted.

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I am  not talking about about the duopa pump that goes into your intestine.

There is a new pump being studied that will go into the SQ like an insulin pump

It is being developed by neuro derm 

I thought I read that the pump would use apoken

Why wouldnt  i  have a SOB with the lozenges if they are made of the same stuff 

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Noah,

I thought you were talking about a pump that did not use Apokyn, I'm sorry.

Yes, the ApoPump does use Apokyn.

The Apokyn injection is an immediate release that does not go through any metabolisation, which is why it works so quickly. The lozenges do take a little longer to work because they do get metabolised, which is why the side effect may be less. I'm not saying that the shortness of breath won't be a side effect of the lozenges, but it may not be as intense. I was just trying to think of any alternative for you at this point. Hang in there my friend. I'll keep an eye out for any other possibilities.

I hope this helps and please keep me posted.

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Mark,

I asked my mom's new MDS about the shot and he told me most people will throw up almost instantly after using it so they are suppose to take an anti nausea drug like domperidone before hand?  Why would that happen?  He said when he was an intern at the ER that's what they used on people who were heavily intoxicated and needed to get it all out of them.  

 

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Miracle,

I do remember when Apokyn first came out thinking, "Is this really going to work?" It has been very successful in helping patients that have issues with off periods that affect their quality of life.

The reason this happens is because there are dopamine receptors in the area of the brain, called the CTZ, that regulates this reflex.

When anyone is to start Apokyn they are first given a prescription for an antiemetic, usually Tigan. The patient is told to start the Tigan about 2-3 days before they attempt to use Apokyn, for this reason.

I hope this helps and please keep me posted.

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Miracle,

Unfortunately, as long as the Apokyn is being used the Tigan will also have to be used for prevention of nausea and/or vomiting.

Like I said earlier, it is usually started about 3 days prior to the first dose of Apokyn. It is used to control the nausea and/or vomiting of the Apokyn and is normally on used for the first few months of therapy.

Keep in mind that not everyone may need and anti-nausea medication. It is used as a preventative measure for the side effect of nausea/vomiting. The belief is to use as a "just in case" because that side effect may make Apokyn less desirable to use.

I haven't heard from you in a while, how have you been? Is your current drug therapy working for you? If so, what is your current therapy?

I hope this helps and please keep me posted.

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