Neupro patch advice

[Aujamw]

ok I posted recently that I am now one week post being off pramipexole. Saw my neurologist today because I have having terrible insomnia and problems staying asleep with increased symptoms. This has been going on for 5 weeks now being as bad as it is now. Can't even get to bed and lay in the bed without symptoms starting and frankly not even feeling sleepy. Just exhausted. Not the same thing. When I do go to sleep I wake up with symptoms all over! Can't even try to sit in my recliner to relax. Have had to try to sleep sitting straight up in chair, if I recline it's a disaster. My neuro didn't offer any help at all with what to do with the insomnia. Just looked at me like I was crazy and acknowledged that the way I'm feeling is because of my refractory RLS and that I'm probably sleep deprived! Oh yes! How obvious! Tell me something I didn't already know! Can you tell I'm irritable and tired.? Acknowledging that someone has problems doesn't do anything to help and without offering any suggestions !!!😡. Anyway. He did offer either I up my Gabepentin up to 900 mg at bedtime( I am taking 300 mg at 3pm, 600 mg at 5, and now 900 at 9) or to start the Neupro patch. It is also a dopamine drug and I am so tired I couldn't even recall good or bad but recall some having problems with it. I went with the Gabepentin for now as I have a Mayo referral. Just want some advise from all of you who know from experience. I am just so frustrated with my current Neuro!

[SueJohnson]

Take 600 mg each at 9, 7 and 5. Taking more than 600 mg you don't absorb as much, and you should separate by 2 hours, not 4. Try this and see if it helps.

[Aujamw in reply to SueJohnson]

I'll try splitting it up. I do take one 300 mg at 3 because that is when my symptoms start. Then thr other 1200 mg later. I will try to split up. can you give me your take on the Neupro patch. Just wondering since it's another dopamine drug am hesitant to take it.

[SueJohnson in reply to Aujamw]

Yes it is another dopamine agonist. It's advantage is it is 24 hours and is slightly less likely to produce augmentation, but sooner or later it would happen so I wouldn't advise it. Better yet would be Horizant which is also 24 hours and is similar to gabapentin. It is taken once a day. It is expensive and most insurances don't cover it. However Horizant has a prescription savings card which makes it inexpensive which you might want to check out at horizant.com/savings. And at your Mayo Clinic referral appointment I would push hard for a low dose opioid to tide you over your DAWS.

[SueJohnson in reply to Aujamw]

And for insomnia ask for lunesta or ambien. Ambien is advised only for short term or intermittent use but Lunesta is not. Always discuss these with your doctor.

[Joolsg in reply to Aujamw]

Find another neurologist. Any neurologist who offers another dopamine agonist after you experienced augmentation on Pramipexole isn't an expert.So many people on this forum are put on Neupro after augmentation on Pramipexole or Ropinirole, and they quickly experience augmentation again. The D1 receptors are over stimulated and scream for dopamine hit and that drives the augmentation symptoms.

I agree with SueJohnson. Up the gabapentin.

Your RLS will remain severe because you're still in withdrawal from Pramipexole. It takes months to settle. The gabapentin takes 3 to 4 weeks to be fully effective.

Stick with it. You'll still have many sleepless night's until withdrawal settles and the gabapentin starts to cover your symptoms.

[Aujamw in reply to Joolsg]

Thank you so much Joolsg. I can always get on here and feel like I am talking to a friend who has experienced much of the same as I have and that is invaluable to me! I have cried more in the last few months than I ever have and that is rare for me. I even cried while I was with the doctor--not that he cared. I am so frustrated and you all have made me feel like I can make it because you are there to answer my questions and offer support! My neurologist first recommended benzodiazepines and I thought that was crazy but then when he recommended this I was thinking the same thing--why another dopamine? I'm sure glad I'm not the only one that thinks my neurologist is crazy! I had high hopes for him as he is a new doctor coming from a Respected teaching hospital but he has lots to learn! Thanks again!

[martino]

I use Neupro and have been doing this for 7 or 8 years. I use a 2mg patch. I also take Tramulief and Pregabelin. It’s very much a combined therapy. I am sure I could stop something but I reason that if it works………

[Trikkinoy]

I am so sick of these doctors that have NO IDEAL what they are doing!! 😡 Once you start augmenting any dopamine drug will make you augment and is not the cure in fact 99% of the time you have to get off ALL dopamine drugs and reset your body! In fact the ONLY long term solution is low dose opioid. Most here in the US take low does methadone. I have a heart issue so I can’t take that, but I am on hydrocodone that I take at night before bed and it literally saved my life. I actually sleep through the night now and have been for 2 years. I pray these doctors get better training. Do your research on opioids and present it to your doctor. 😞

[Merster in reply to Trikkinoy]

I went through the same scenario as you with the pramipexole , the requip , neupro patch and they all resulted in aumentation. By accident I ended up in hospital with Kidney stone issues and found that the Morphine drip I was put on kept my Rls symptoms away for five days! I thought I was cured. Eventually the symptoms came back so my GP authorized low dose ms contin which is a long acting morphine sulphate and combined with a low dose of ropinerole the two seem to work together without the augmenting. As.long as I can get the Ms contin ( no.family doctor here in Ontario Canada) I have been 80 % symptom free and have my life back. No augmenting for going on 4 yrs now.

[lenpharleyd]

I’m sorry to say that Neupro will be great in the short term but will probably be terrible in the long term. I thought it was awesome in the beginning and then had to increase dosage over time until the maximum dosage and then augmentation kicked in and that was pure torture! Augmentation is RLS during the day on steroids!!! Pure hell!!!

Thankfully I found an RLS Doc who gradually got me off dopamine agonist meds gradually with Gabapentin and low dose methadone. Eventually off Gabapentin and solely on 4ml methadone for the last 4 years.

I hope this helps. Best wishes!