I've started on the Apokyn pen. At least my knees are getting a bbreak since I started. I was falling down so much, I was ready to buy my first wheelchair, but I'll put it on hold for awhile.
Do any of you guys/gals remember Bella and Fabs from the old forum? Before Fabian passed on, Bella used to give us the day to day on Fabs. Remember, at one point , he was using the Apokyn pen and we had a thread about nausea in taking both Dopa and Apomorphine? Well, the antinauseant that the company has been "allowed" by the FDA to use with apomorphine is called "trimethobenzamide". This stuff (to me, and I must stress the point of only one opinion here) made my PD worsen, and the company had no alternative, so I just used dimenhydrinate (car motion sickness pills, no prescription) before my first dose of apomorphine.
Well, the stuff works (once again , one vote here). My first shot made me feel queasy, and after I got up to a therapeutic dose without antinauseant, I do get "the worms", as I call 'em, but it goes away in a short while.
Well, the short story is that I haven't fallen in a week (allowing my much battered knees a rest). The question to all here is, "they say that a typical dose has only short acting effects because of the short half-life of the compound in the body, but I am so much better at walking, i can almost throw away my cane for short distances, up to a day after a dose. It appears that there is something that the small amounts of drug left in the bloodstream is doing that is more long lasting, and has a positive effect on motor control. At least that's my take.
If you are getting to the point where you can stand up only with an aid, and are suffering bad "offs", I urge you to try the pen (it is expensive though). Self injection is really a peice of cake, doesn't hurt one bit (and this is from a guy who used to get big time butterflies when drawing blood) and is over in a few seconds.
Please give me and all of us any other "reviews" on the "pen". I realize that it is rather new here in America, but any pen newbies or vets, give us anything you ca as far as experiences, please cs

What wonderful news, cs! I was hoping this would work for you. I wonder if your neuro will be surprised at your improvement. I'm so happy for you!

Thats good news ol' buddy!..There was a nurse at our support group last Saturday giving a lecture on Apokyn, and she claims that it can last up to 2 hours..She also described the short term nausea that you talked about..She also showed a short video clip of a before and after patient, that reminded me of the GDNF 60 minutes video..It showed a guy shuffling..then walking..Very impressive!

THat was my "adaptation nurse" for the injection lessons! I won't say her name here , but isn't she great! She is truly "one of them" who is "one of us"; and there are not many of "them who truly understand us" around. Not even my neuro (as his own admission); but he was the one to get me into the program and was relatively sure that I could "hack it", even though i've told him that agonists are "not my cup of tea".
Apomorphine is the most potent D agonist known. THe structure of Dopa is conserved in the structure of apomorphine ( incorporating a "frozen" Dopamine conformer-like structure, rather than a "freely rotating" one ,such as dopamine itself) It just has some more in the way of lipophilicity or a structure which is brain penetrable. SO a small amount of intact apomorphine that makes it to the brain because you are injecting it and it doesn't get broken down in the gut or torn apart by first pass liver enzymatic degradation goes directly into the brain , reaches the brainstem and "Does it's job".
I am renewed with the idea that there might be some other "optimal" D agonist that exists but hasn't been found yet. Remember, we are really looking at the future prevention of PD rather than saving (and by "saving" i mean giving a PWP more, better years with the disease) those who have PD now. Once prevention is figured out, all that will remain us; those who have run the course with PD and can't be saved. Maybe someday there will be a monument in Washington with the statement of the fact that there were millions of us who "didn't make it", while waiting for the cure to PD, punctuated with the address that PD is a thing of the past, and the names of those who cured it, and the year the disease left us alone, and a quote by those who cured it, maintaining that it was always just a matter of time, but the above fought the good fight and never made it, but it was because of their sacrifices that your father, your mother , your brother, sister etc., won't ever have to think of this abominable disease again. FOREVER.
So there are cell constructions to be made and tested yet, ones that are genetically so close to the patient that rejection and control of growth and ultimately the correct ability to do the job of curing PD is accomplished. There are still pharmaceuticals awaiting to be born; ones to further attenuate the suffering of PD, and there will be an "intermediate" time to get the cure polished up so that it works every time, almost like a vaccine for PD, that stops PD in it's tracks before it gets started, and it is banished forever from this globe. Small steps for a single human, but large gains in the preservation of a happy, healthy, human species. cs

Well I bit, you knew I would!!
The anti emetic was domperidone:
MOTILIUM® tablets

COMPOSITION
Each tablet contains 10 mg domperidone.

PHARMACOLOGICAL CLASSIFICATION
A.5.7.2 Anti-emetics and anti-vertigo preparations.

PHARMACOLOGICAL ACTION
Domperidone is a dopamine-receptor blocking agent. Its action on the dopamine-receptors in the chemo-emetic trigger zone produces an anti-emetic effect.
Domperidone does not cross the blood-brain barrier to any appreciable degree and so exerts relatively little effect on cerebral dopaminergic receptors.

Fabs found that once you get used to it, you did'nt need any anti nausea at all, never. Now you have found it, I bet you will find it invaluable.
Great rescue drug! Go to the movies Chuck, get out and enjoy, always with a couple of shots in your pocket, behind your ear, or in your good wifes handbag. I could adminster it in the dark (in the movie theatre), while pretending to have a snog at cocktail parties, and while he was driving. Very versatile gal I became. I could administer it, backhand, forehand, and slam dunk. Get the picture?
Stay fighting
Love Bella

What a pleasure to hear from you! I didn't know that you would post, I just assumed that you didn't read anymore. I miss your "quit whining" attitude! I'm sure that PD was as difficult for you as being the loving caretaker of Fabian [for over (30?) years], as it was him, having this damned disease!
So I guess you have the sun back for the next 6 months, enjoy it, and may your electricty keep on moving
To all here who don't "know" Bella, she has seen it all. Throughout the whole process she pushed and cajoled her late husband to keep on trying, even though you believe that you don't want to keep going.
I wonder if "Googy" is still out there listening? There i just did a big cast into the pond, we'll see what turns up.
And now that you are registered, people who are looking for that medication change question and/or any other PD related question for their carepartner (one that nobody is giving them a satisfactory opinion on), can now private message you, for advice! see ya - cs

Dear Ol’ CS,

I have been on Apokyn for over a year. My Dr had me take the anti nausea drugs for 2 weeks before I started using the Apokyn. I never had any problem with the anti nausea pills or the Apokyn. I stopped the anti nausea drugs after 2 weeks.

When I began taking the shots, it really pumped me up. It made it easier to do so many things (including bathroom functions)! I felt almost normal, and it was wonderful. The first time I saw the Dr, 6 months later, I ask him why I wasn’t getting as positive an effect from the other drugs that I was getting from the Apokyn. Regrettably he had no answer.

I primarily use it when I have to be able to function reliably at a certain time. You’re a better man than me if you can give yourself the shots. My wife gives me 99% of my shots. I have no problem with the idea of giving myself an injection, Getting everything ready to give an injection is pretty simple. But usually, by the time I think I need it, I can’t function well enough or hold still long enough to actually do the injection.

For a long time, I was using a shot at bedtime to assist me falling asleep. In the last 2 or 3 months, for whatever reason, I haven’t needed that and I am not using nearly as much as I once did.

This tool (Apokyn) is especially useful when traveling and you need to board or exit the plane during an off state, or if we want to go to a movie or out for a nice dinner. It gives you the ability to function in a much more reliable fashion. Use it and enjoy.

Kevin

she doesn't visit anymore but told me to send everyone her love. I know she'd love to hear from everyone.

Trudy Puch
googyuk@pacbell.net

Charlie

Are any of you still using APOKYN and does anyone else have some shared experience with this medication.

Imagine my shock as I read this post to see Kevin's reply. I only read the post because he had taken Apokyn for some time. I had no idea it was an old post resurfacing. Anyway, thanks for letting me read his post all these years later. It was like a little unexpected visit from my best friend...

I check in from time to time just to see how some of you are doing. It's good to see so many of you still here.