Update - Neuro appointment and Neupro! - Cure Parkinson's

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Update - Neuro appointment and Neupro!

MissRita profile image

Hello all!

Had an appointment this morning with my Syracuse Dr. and NPP and it was very productive!

The NPP told me to come in unmedicated - Lmaoooo - THIS was hilarious BC I couldn’t sit at all, and I paced pretty much the whole time. When I did sit down, the tremors and shakes were hysterical to say the least. At one point I was doing squats on the floor BC I had to keep moving! Lol Needless to say a fun time was had by all!

The first observation was my hyperness and my energy level! She said that although not rare, it’s not usual that a PD patient has as much energy as I do.

The NPP watched me walk, and she was impressed with my gait, walk, arm swing, body strength, and sturdiness! So I was happy with that.

The Dr. did the same and was equally impressed

He did say the biggest issue currently is the tremor and he did see Bradykinesia as well. Telling him about the transit time for L/C he suggested and prescribed NEUPRO. I’m a little nervous about it given some of the side effects, but he said that he thinks my tremor is too out of control - it isn’t sure as to why.

NOW onto getting approved by insurance lol, it’s almost $950 WITHOUT it so let the preapproval process begin!

Thoughts?

Additionally, I’m still going to Rochester as they are a COE and Upstate in Syracuse is not.

81 Replies

What dosage are you on?

I just started it this month and I'd be happy to answer any questions for you.

Just by your description, I really hope you're taking some form of levodopa also.

Dr told me no to taking L/C as well. He’s starting me at 2 mg. Thoughts?

Any weight gain, water retention, odd SE?

2mg is a starter dose. It's unlikely to do anything unless you're very sensitive to drugs. I escalated up to 6mg which i started today. No side effects, bar it being a bit itchy sometimes

Ok. My body reacts pretty quickly so we shall see!

He said he’s worried about the dyskinesia if I take LC with it.

i'm not a doctor and this is not medical advice, but if your tremors are as bad as you state a dopamine agonist like neupro is not going to have much effect on your tremor. it sounds like you need l'dopa. Neupro is generally used for early stage patients where the symptoms are very mild or as an add-on to l'dopa. I'm taking it as an add-on in the hope it'll improve my on-time without the need to increase my l'dopa.

Yea I figured. He said didn’t want me to get dyskinesia so I guess we shall see. The odd part is that after about an hour of shaking in the office with no medication this morning I started to calm down and my blood sugar began to raise a little bit and I wasn’t nearly as shaky and I wasn’t nearly as tremory. Now mind you I’ve had every test for diabetes and blood sugar so that’s clearly not it. And of course when I got home I took two tabs and within an hour I was back to normal.

Is there an l-dopa patch?

Not that I'm aware of

Lol of course not...there should be!

It may not feasible due to the amount of ldopa that is required for treatment

I’m sure.

Hi,

I started with Neupro 2 years ago and had the symptoms you have. Neupro helped my tremor, but never felt without anxiety. Worse was that I got as an impulse disorder with gambling which cost me lots of money. The moment I started with madopar changed my life. It gave me stability and I am pretty ok now.. watch out with Neupro!!

MissRita profile image
MissRita in reply to pinoka11

What exactly is Madopar? Still waiting on the Neupro script.

park_bear profile image
park_bear in reply to MissRita

A UK med that has benserazide instead of carbidopa.

MissRita profile image
MissRita in reply to park_bear

Ohhhhhh....not available in the US?

park_bear profile image
park_bear in reply to MissRita

Correct

MissRita profile image
MissRita in reply to park_bear

Le sigh 😔

pinoka11 profile image
pinoka11 in reply to MissRita

Levadopa

gginto profile image
gginto in reply to pinoka11

Hi- Any side effects with Madopar?

pinoka11 profile image
pinoka11 in reply to gginto

No I am really fine. I made a cautious build up and that really helped. I am now in on/off modus, but it is very predictable now. I only have to plan my dinner well. Too close to my pills or eating too much gives me problems in the evening.

Although I generally think dopamine agonists are not a good idea, since carbidopa levodopa is not working all that well for you it may be worth a try.

That said, I disagree with this doctor taking off carbidopa levodopa completely and cold turkey. This is wrong in so many ways. For starters, use of carbidopa levodopa has been shown to not accelerate the arrival of dyskinesia.

pubmed.ncbi.nlm.nih.gov/250...

The sudden cessation of a substantial dosage of carbidopa levodopa can have undesirable consequences, in addition to leaving you at the mercy of your tremors.

MissRita profile image
MissRita in reply to park_bear

I hear you. I did have the beginnings of dyskinesia with the Mucuna that I was taking and adding the vomiting I said goodbye to that.

I also expressed my concerns to the doctor this morning about taking me off LC so quickly as even though I’ve had fits and starts with it it has worked somewhat.

When amantadine didn’t seem to be a very good fit for me I immediately took myself off of it because the side effects outweighed any benefits.

I’m still actually waiting on my insurance to even agree to cover the medication because it’s well over $900 a month if I didn’t have insurance! LOL

The thing about LC is that it takes so long to get into my system and depending on the day I can have on periods for 4-10 hours or for one or two hours.

Additionally I would stay on the LC because the tremors this morning we’re just heinous so I’d rather go with something that works as opposed to something that may or may not work.

All I know is if it makes me tremor then I’m not using it because that’s exactly what amantadine did. And supposedly Amantadine helps with tremors and for me it made my tremors worse.

I’m still planning on going to see my neurologist in Rochester because I definitely think I need a second opinion.

park_bear profile image
park_bear in reply to MissRita

Agree with getting the second opinion and staying on the LC.

Did you ever take Ropinirole (also known as Requip)? It looks like Neupro is an alternative to Ropinirole with different side effects: iodine.com/compare/requip-v... Neupro appears to be more expensive as you suggest, and is lower risk of "mental disturbances" (a very good thing!) than Ropinirole (I had what most would call hallucinations from Ropinirole, so I quit that altogether and now depend on Ambroxol to do the progression and cognitive heavy lifting for me as you know). Very sorry your tremors are bad enough that you need to consider Neupro, I plan on doing (& trying) more herbal remedies and will advise you if any are better than what I have already stated here (my left hand tremor is also very difficult for me). Have you tried acupuncture? It does give some relief, but it needs to be done over consecutive days, this once a week appointment stuff just will not work as well with acupuncture (which is the way I originally tried it).

MissRita profile image
MissRita in reply to

I have an acupuncture guy that I have to plan a schedule with. No I have not tried the other meds you mentioned.

park_bear profile image
park_bear in reply to

What dosage of Ambroxol are you taking?

Would you care to add any further detail about what it is doing for you?

in reply to park_bear

Sure. I followed the last completed Ambroxol trial protocol (in the 1st link below), and stopped at 600mg a day (300mg 2x day), but the completed trial stopped higher at 1,260mg a day. I had minor stomach upset in the 1st week or so as I adjusted to it. My neurologist did not suggest it, but he is fine with me taking it; in fact, this week he asked me to tell him where he can get it if any of his other patients want to try it. You can find it on Amazon in the form I take, which is ten 30 mg tablets 2x daily (each blister pack contains ten 30 mg tablets, three blister packs to a box), but you may find it elsewhere as well. It is OTC in Europe, France for example it is approved as a cough medicine, which it has been doing well for almost 50 years with an excellent safety record. The dose I am taking is 5x normal for cough, but way under what they have given safely to pregnant women (in the 2nd link below, which discusses a current trial underway on Ambroxol for PD dementia). As for what it is doing for me, the #1 benefit to me over the one year+ I have been taking it is cognitive - keeping me clear headed and free of PD brain fog (and given our 50%+ PD dementia risk, that is no small benefit; my grandmother wasted away from PD dementia until her death, not something I for one am willing to risk). It has also reduced the severity and number of my freezing episodes, and helped me with some small motor functions (like typing this and facial gestures, loosening our PD mask). Now at one year I'm beginning to wonder if it helping me with some larger motor function too (seems to be much easier for me to get out of deep couch for example). One thing I tend to forget is how it stopped my shoulder nerve pain from PD, which it did early on months ago (it has sodium channel blocker properties which make it an excellent nerve pain fibromyalgia medicine as well). The 2nd link below includes a pretty powerful statement about Ambroxol: "This (Ambroxol) strategy could stop or reverse the underlying pathology of PD; it might allow patients to get better." As to why I felt it was critical for me to start when I did and not to wait two years until the current trial completes and its benefits are more well documented (it has not ended early which is a good sign), that rationale is in this statement (3rd link below): "it is not known when during the natural history of PD the first intracerebral α‐synuclein pathology appears and whether there is a “point of no return” beyond which the damage to the neural systems affected by synucleinopathy can no longer be protected or revived, even with the most effective therapies." In other words, for those of us with PD, there may be literally no time to waste, and I'm not prepared to waste any!

jamanetwork.com/journals/ja...

centerwatch.com/clinical-tr...

movementdisorders.onlinelib...

park_bear profile image
park_bear in reply to

Wow! Big thanks for this!

This is the most interesting and persuasive comment on Ambroxol I have seen. If you are so inclined, a copy and paste of this comment into a separate post would be helpful to draw attention to this treatment.

in reply to park_bear

good idea, will do so, more of us with PD should really think about it, thanks!

PS, one thing I didn't mention is why we have not heard more about this potential Ambroxol treatment option, including our neurologists, which most have not. The answer to that like many things is follow the money, or in this case lack thereof. Ambroxol has been off patent for decades, so it is now generic and very cheap versus what big pharma sells their latest and greatest branded patented drugs for when they launch them, which is why we mostly hear about Exanatide, Nilotinib, DNL151, Anavex 2-73, etc. in current trials, where they can make much bigger bucks. So it is left to the universities and smaller hospitals with grants to fund repurposed Ambroxol research for PD (very thankful for that). Some of these new treatment options may ultimately be proven to work to some extent or other, the problem is they are still years off and from what I can tell, and most if not all are not nearly as safe as Ambroxol. Not something I'm willing to bet my life with PD on. That said, there is one stem cell trial that may hold much promise for us, but it is also still years off from when we might ever see it, and we need to slow or stop our progression now.

neurosciencenews.com/neuron...

MissRita profile image
MissRita in reply to

I asked my Neuro if he heard of it and he said no. I then showed him the box from Amazon...lol

Levod profile image
Levod in reply to

DHPSR:

Very interesting!

"the #1 benefit to me over the one year+ I have been taking it is cognitive"

During this 1 year+ time period did you undergo any kind of neuropsych testing (e.g. before and after) that would support your conclusion of a bonafide benefit, as opposed to a feel-good positive-attitude placebo effect?

in reply to Levod

no I did not, but if you ask my family, they will all attest strongly to my cognitive capabilities being sustained over that period, the most I can offer beyond how it feels in my own head now versus where I was with brain fog over a year ago, and I do not plan to go back there. That said, the trial underway now in Ambroxol for PD dementia should answer that question next year, but for the reasons I stated I'm not waiting another year for what is pretty clear to me will be good news and not a placebo effect, my progression must slow or stop now. If you wish to wait, that is totally your call.

Parkinsonjisung profile image
Parkinsonjisung in reply to

what's the weekly cost of this?

1LittleWillow profile image
1LittleWillow in reply to

The ambroxol pills I found on Amazon are $75 for 300-30mg pills. You're using 2 boxes ($150) a month, correct?

in reply to 1LittleWillow

correct yes, but you should escalate slowly (trial protocol below, which ends at a much higher level than I take) to watch for any rare side effects beyond some normal stomach upset which I adjusted to in a week or so. You should of course also let your doctor know if he/she has any concerns (many have never heard of it so they will need to check out your research). I also usually have some chocolate handy (I prefer dark), to help offset the somewhat harsh taste of it (which may even help your PD symptoms! scienceofparkinsons.com/201... ).

"The 186-day exposure period comprised 28 days of dose escalation, with each dose administered 3 times per day as follows: 60 mg (days 1-7), 120 mg (days 8-14), 180 mg (days 15-21), and 300 mg (days 22-28). This exposure period was followed by 158 days of administration of ambroxol at 1.26 g per day (420 mg 3 times per day)."

jamanetwork.com/journals/ja...

1LittleWillow profile image
1LittleWillow in reply to

Thanks for your reply! I'm not sure if I'm going to try it just yet, as I'm about to start experimenting with mucuna, but I'm saving the information. :)

in reply to 1LittleWillow

my nutritionist also suggested Mucana Pruriens, a natural form of L-Dopa, to help me through off periods from Carbidopa/Levodopa (which I have reduced to about two-three 25-100 tabs per day now, a pretty low dose), and it does work (I use it), but like Levodopa it is only treating the symptoms, it is not potentially slowing (or even reversing) them as Ambroxol is thought to be doing.

Smittybear7 profile image
Smittybear7 in reply to

I would like to follow you. I have resting tremors. They are exacerbated by stress and anxiety. I'm only taking supplements and dopa plus by pure encapsulation seem to help .check it out

MissRita profile image
MissRita in reply to Smittybear7

Stress and anxiety does for me too!!

Smittybear7 profile image
Smittybear7 in reply to

I would like to follow you. Let me know what herbs are effective for tremors. Thank you

in reply to Smittybear7

for PD tremor, I use the following as for me there is no one answer:

Amantadine 100mg caps 2x daily

B12 & D supplements drmayosbooks.com/blog/can-v...

Cats Claw drweil.com/vitamins-supplem...

Avena Sativa motherearthliving.com/healt...

you could try Valerian Root as well to calm them down, which it does very well, but it will also put you to sleep (great for that)

the beta blocker Propranolol also works great on tremor, but it has side effects that were not good for me, use of it may also not be good for PD long term, so I stopped using it

MissRita profile image
MissRita in reply to

I really wish amantadine had worked for me. It did in the beginning someone but I couldn’t handle having such a dry throat to the point where I could not swallow and it felt like my whole esophagus was sandpaper. Additionally I was constipated to the point where it completely dried out my intestinal tract. Then if I were to eat later on in the day I could not swallow like normal. I do wish it really worked though because it did help my ADHD.

in reply to MissRita

hmm, not sure how to address the swallow part, but do you take a probiotic to help with constipation and improve overall gut health (since PD is thought to have started there and transmitted to the brain via the vagus nerve)?

pubmed.ncbi.nlm.nih.gov/275...

parkinsonsnewstoday.com/202...

MissRita profile image
MissRita in reply to

Yes I do. I’ve had an inkling for years that my Vagus nerve could be the culprit.

in reply to MissRita

think we both may want to try this new Solace probiotic in that 2nd new research link.

MissRita profile image
MissRita in reply to

Yes!! Where do you get it?

in reply to MissRita

solaceprobiotic.com/product...

If you try acupuncture, try to go 3-4x in the 1st week & see what that does for you, 3-4x a month although helpful is not all that you can get out of it.

MissRita profile image
MissRita in reply to

Yes that makes perfect sense. I couldn’t imagine doing it a few times a month and getting any benefit out of it.

Best of luck to you with your treatment 😀

I started the patch in January and have had great results for restless legs and calf and arm cramping. I had some slight nausea so I cut the patch in half and that works for me. It says right on the box not to do that but my brother in law is a naturopath and and pharmacist and he suggested it. I pay $100 for 30 patches. There is a much reduced price from neu pro for those that income qualify.

MissRita profile image
MissRita in reply to NellieKane

I’m hoping that the fee is not too high as I have excellent insurance. What do you take for the nausea? I do have a prescription for Zofran but I’m hoping that’s all I’m going to need for the nausea.

MissRita profile image
MissRita in reply to NellieKane

Have you found any impulsivity’s or needs to spend a lot of money gambling? This seems to be an over arching side effect that I’ve read about.

NellieKane profile image
NellieKane in reply to MissRita

No, nothing like that.

MissRita profile image
MissRita in reply to NellieKane

What mg are you on?

NellieKane profile image
NellieKane in reply to MissRita

2 mg patch so I’m taking 1 mg/daily

He prescribed zofran but I don’t need it with half a patch

MissRita profile image
MissRita in reply to NellieKane

Ok thx!

You’re welcome, good luck!

Go to the Neupro company site and see if you qualify fir the discount card Neupro.com I think or google Neupro discount card

MissRita profile image
MissRita in reply to Shelby2

Thx!

HelloHow long ago were you diagnosed with PD and how long before being diagnosed had you noticed pd symptoms?

MissRita profile image
MissRita in reply to Grumpy77

Started to tremor in March April 2015 and had some rigidity and some stiffness and then I was formally diagnosed in 2017. Was on Mucuna the entire time until January of this year Because it started to give me dyskinesia and the vomiting was too much for me to deal with and got onto medication in February. The one thing I have noticed is that levodopa carbidopa has started to give me dyskinesia. The odd thing is that my doctor cannot seem to figure out why I can take levodopa and then once I start to shake more often than not if I eat a snickers bar and have a can of sprite the tremors seem to go away for many many hours. Mind you I’ve been tested for diabetes and other issues and there’s no diabetes diagnosis. Although I do have Hashimoto’s. My doctor has a lot of questions because my symptoms don’t always seem to correlate with other cases he has seen in the past. I’m getting a second opinion in May just to balance out what’s been going on. Again the other odd thing for me is that I’m constantly hyper and I’m not tired and I don’t drink coffee and I don’t have any caffeine. It’s definitely a conundrum.

The other odd thing is that anytime my body has any kind of gas or has a BM or anything remotely causing the lower region of the rectum to start to react I start to tremor more until I go to the bathroom and then the tremors start to subside. I truly believe that my issues are stemming from the enteric nerve and the Vagus nerve but I have yet to be able to talk to someone who actually understands that. Hence the reason why I’m getting a second opinion in Rochester.

MissRita, did you ever try taking carbidopa with mucuna for the nausea?

No but I’ve thought about it. Unfortunately by the end of January and beginning the Mucuna gave me dyskinesia. I was in my office and I started to walk funny on my right side lol I felt like my right side was drunk! I thought it was a one off but as I kept using it the symptoms got worse. Le sigh 😔

😢😢😢Thanks for your reply. 🤗

Try northdrugmart.com

MissRita profile image
MissRita in reply to Rich-e

Thx!

My husband had the Neupro Patch. Levadopa didn’t do anything. They thought he had Lewy body dementia. Was then rediagnosed with PD. The Patch was amazing. No side effects, although the Neurologist says he’s had a couple of patients with side effects.

See my Mannitol post, which explains our experience.

MissRita profile image
MissRita in reply to gwendolinej

Thx!

MissRita profile image
MissRita in reply to gwendolinej

What was the header or topic where your conversation is? I am looking now and I can’t seem to find it. Thanks.

gwendolinej profile image
gwendolinej in reply to MissRita

Sorry, I was reacting to your comment that your neurologist wanted to prescribe Neupro and that you were worried about the side effects.

Neupro was approved! $70! Not bad for a $700 drug ;)

Have you started it yet? How's it going?

Pick it up tomorrow! 🙏🏼

I've been using 3weeks now. Pretty happy with it. Its significantly improved my on time with no side effects. Everytime I changed Dosage my sleep was bad for 2 nights though. You may or may not face that

I sleep like a log to begin with so we shall see. Are you taking any other medication with it? My doctor told me not to take L/C with it and quite frankly it hasn’t been working for me for quite some time and actually makes my tremors worse and because it has to go through the gut it just has not been very positive. That’s the main reason why we agreed to do something that goes through the bloodstream. I’m hoping I don’t need anything more than 2 mg but you never know.

I take 150mg stalevo 3times a day n 6mg of the patch. Unfortunately low doses have no effect on me. They never did. Everyone's different. There's no magic formula. How much c\l were you on?

25/100 and quite frankly there’s some days where I take three but most days I can take 4 and up to 8 it doesn’t matter how much I take or how little I take I end up with dyskinesia or it just doesn’t work. I started taking Mucuna in 2016 and had to get off of that the beginning of February of this year because that gave me dyskinesia. I have very slow gut motility and I have problems with absorb ability. I took the Gastro paresis test showed that 90% of the food passed through my system in less than three hours. So at this point I know my body reacts pretty quickly to medication my fear is the patch will not work either and then that leaves me going back to the drawing board.

The over arching issue is that anytime my gut is digesting food or moving fecal matter through the body the tremors become much much worse and they can go for hours on end. The L/C again has not worked for that even on an empty stomach.

I truly wish that I could get on some sort of research panel because I would love to be a subject to test because a lot of my symptoms don’t match up and they just seem so odd. Then again every case is different blah blah blah blah blah LOL

Are you in the US or are you in Europe?

Europe

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