Neupro

[ViewsAskew]

So sorry to hear that it's become that untenable . And, what a weird situation with your doctor. I've heard that those periods they can make doctors wait to contact existing patients can be as long as a year - guess you are sort of lucky (and, yes, I hear the irony in that statement!)

Looking forward to the next update and hoping for better news.

[jy13131]

Hi
Thanks for all the responses. I wrote out a long response last night and then finally fell asleep before it posted! Hahaha of course! Anyway, I have been on neupro for about 9months based on when I wrote the original question. I take 1/2 of a 2 mg patch daily. I was told it was fine to cut in half. My assessment yesterday when I wrote first, was that it is no longer working and I'm getting breakthroughs beginning sometime around 3am. I have been switching off what I take to get me through the night between oxy and tramadol. Further my opinion was that the neupro worked and bought me 9 months of not having to increase my opiates, and this is just the normal course of my disease. I have never had to make an increase in my opiates since becoming stable and after completing my withdrawal from requip (so 3 years ago I believe) BUT......after having another day to asess, the degree to which I am declining is so quick, intense, and a little earlier each night, I'm reconsidering whether this is augmentation or not.

I read about the gentleman who is on double does off DA as he attempts to withdraw from one. My experience was very different. I see Dr B and he told me to go off the requip cold turkey. I can say with 100%certainty that I could not have made it through the next 3 weeks without someone being willing to prescribe me enough opiates for it to be bearable. I was never comfortable. I don't really think it's possible to be comfortable under the circumstances. I never thought I would EVER discuss a DA again after that. But I know that there are never any "Ideal", risk less, simple, ways to treat RLS. I had an appointment with dr B on Friday and thanks to a 7 car pile up, I Missed my appointment. I now I am putting together the best possible combos without creating more dependency (haha) until we figure this out. Now I too wonder if this is augmentation and do I continue to out this patch on my body everyday! To be continued ......

[Rustsmith]

You are still on a low dose of Neupro if you are only using 1mg/day. The recommended dose for Neupro is 1 to 3 mg/day. So the question that you need to consider in consultation with your doctor is whether the breakthroughs are due to augmentation at 1mg or whether this is simply a progression of the RLS. Take a look at note in the link in my signature. It includes a number of questions developed by the International RLS group that should help you decide which it is.

[ViewsAskew]

Are you using the tramadol or oxy regularly? Or only sometimes for breakthrough?

[jy13131]

I use oxy, methadone, tramadol and lunesta. They are all very low doses and for a very long time I have been symptom free basically and have taken my meds like clockwork. As long as I took my meds, no symptoms. If I was even lye on a dose symptoms. It was a very delicate balance but pretty spot on (thank you Dr B). I have only had to deal with the side effects of those medications. Thank you for the link, going to read it but I am definitely feeling like I'm augmenting because the symptoms are back full force and difficult to manage without putting myself into a heavily medicated state (which I am not willing to do).

[jy13131]

That was a very helpful article. Thank you again. Certainly does feel just like the last time I augmented. I have call into dr B and an appointment Thursday. I have a job interview today this afternoon for a new job that I really hope to get. It's just a bummer that I have to choose between dosing up on my meds and risk being zombie like, or go in with some good quality sleep under my belt. But I have already taken an extra tramadol and and 1 mg of methadone (I cut it into quarters)
So what's a girl to do in that situation? Curl my hair of course (and try not to wake my husband up)!

[Polar Bear]

Jy - good luck with your interview, I wish you success. And hope you're curls are fabulous

[ViewsAskew]

It a absolutely could be the DA...it could be the tramadol, too. It's the only non-DA associated with augmentation.

I do hope you do well in the interview. Hopefully your concern over doing well will amp you up enough that you are just bubbly and sparkly enough while quietly confident so that you look the perfect match for the job .

[jy13131]

This will be my third time trying to post! It keeps closing the program before I can get it posted! I'll keep it short. Thanks for the support. Interview went well and have second interview tomorrow am. Dr B confirmed its augmentation so I am 2 days off neupro now. Wiggling away on my couch and trying now to eat everything in my fridge!! Ok going to try and post now!

[Rustsmith]

Third time was the charm with your post

Happy to hear that the interview went well and that you have progressed to the next level. Hope this all works out for you.

Did Dr B take you off of Neupro cold turkey or is he relying upon your other meds to cover the effects of stopping by adjusting their levels?

[jy13131]

I typically have been on very low doses of both of my DA's so with requip and neupro he said cold turkey. And as far as mess go, we have been working together long enough and he knows that I understand fully the repercussions for taking "more" medication (that being it just creates a whole new problem of withdrawal after the augmentation is over. The plan with us is for me to take the very minimum that I need to be comfortable enough to get a reasonable amount of sleep. I increased my meds last night by 5 mgs oxycodone. Tried that and was still jumping around so I added 1.25 mg methdone by cutting my pill in quarters. It was enough that I just got a good 5 hours of sleep and will probably get two more once I go back to sleep. Then when augmentation is over, I just slowly go back down on whatever I need to until I hit the wall and have symptoms. Sometimes I stay there until relatively comfortable again, then cut down if I can Again. My goal is to be on as few medications as possible. I have a lot of lifetime (I am 50 years old) that I need to deal with this disease and if I have to go up, it is going to be in the smallest increments possible. Dr B says we should always be at the place where our symptoms are JUST covered, not overly covered and not uncomfortable. And I found that perfect line so I know what to aim for. Having Dr B has been a true God send. He is o compassionate toward the disease. I am going to post in another thread about an experience I had when admitted to the hospital and the lack of respect or compassion I received while there as far as my RLS went. It was truly disturbing Andi felt a lot of gratitude for Dr B. He tries to train as many doctors as possible. If anyone has a doctor they work worth, he has always told me that he is open to educating them on how to treat RLS. I feel that could be a real viable option for some of the people on this section of the forum. It breaks my heart to hear of people trying to get off a DA with no support. There is no need for us to be tortured. We are tortured enough.

[Rustsmith]

VIewsAskew wrote
[url]So sorry to hear that it's become that untenable . And, what a weird situation with your doctor. I've heard that those periods they can make doctors wait to contact existing patients can be as long as a year - guess you are sort of lucky (and, yes, I hear the irony in that statement!)

Looking forward to the next update and hoping for better news.[/url]

I got to visit with Dr Ondo yesterday. It was amazing to see how much he changed now that he has changed employment. He appeared to be much happier, which I suppose is true for anyone with a new job.

For my treatment, we are waiting on the results of the blood test to see where my iron levels are. If they have dropped, he wants to do an iron infusion but admitted that this helps some and not others and that they have no way right now of predicting which group I would be in until we try it. Based on past experience, I don't expect this would help me, but i will keep an open mind if we end up trying.

As for my meds, I was given three options (for reference I am currently on a 4mg Neupro patch and 1200mg gabapentin). 1) change the gabapentin to Lyrica, 2) change the Neupro to 3x/day pramipexole and 3) switch both to methadone. We discussed #1 and I decided that was not the way to go because both gabapentin and Horizant did nothing for my urge to move symptoms and were not addressing my sleep issues with waking up at 2 to 3AM each day. As for #3, he did not seem to be pushing this idea and quite frankly, I am not sure that tight now I can handle the addition of all the complications that methadone involves nor am I quite ready to make that step right now. I simply need more information about using prescription narcotics when I become a Colorado resident (it appears that they require monthly testing, but I am not sure) as well as any potential problems with vacation travel with narcotics to South American countries. So, that left option #2. He seemed comfortable with having me switch back to pramipexole (and still with gabapentin) since I was only at 0.375mg when I augmented before. There is a recognition by both of us that augmentation will probably happen once again so that it is just a temporary fix. I therefore agreed with this approach primarily because it should get me through the next few months and will allow me to identify a local doctor in Colorado who can work with Dr Ondo before I eventually have to make the switch to methadone.

So, today I am making the switch. It is being done without a transition. I do not have a patch stuck to me for the first time in 15 months. Hopefully I can remain at low doses of pramipexole with the 3x/day approach and regain control as well as improve the amount of sleep that I am getting.

[Polar Bear]

Good luck - first step today

[Rustsmith]

Yes, tonight will be interesting.

[ViewsAskew]

Hope it works.