What to do now ?

[banjololapoppy]

Hello, I have been on a 2mg Neupro patch for the last 6 months. It has been working well except for the last 4 nights where I fear may now be the start of augmenting.

I have had restless legs for a few years now, it became exacerbated last year after a craniotomy for a brain tumour. I have always taken Palexia which worked well for a couple of years & then only lasted for a couple of hours.

My question is, what is the best thing to do now, I have read that I should wean myself off the Neupro but what to do I take in the meantime ?

I am in Australia with a very understanding doctor who I think would be open to me trying a different medication.

I am really fearful of going back to night after night of poor sleep especially as I am finally beginning to feel better after my surgery & radiation.

Your advice would be much appreciated.

[Jules1953]

I live in Western Australia.

I have had RLS for 49years.

After being on Pramipexole for a number of years I experienced augmentation. I was not sleeping at all and my whole body was jerking.

I slowly reduced my intake of Pramipexole and towards the end I used Endone (oxycodone) 5mg to help me reduce the amount of Pramipexole I was taking.

Then I heard about Temgesic sublingual tablets 200mcg, from Shumbah on this online community site.

I am now taking approx one half of 0.125mg Pramipexole an hour before bed.

Then when I go to bed I take one, sometimes two Temgesic sublingual 200mcg tablets under my tongue.

Temgesic is micro dosages of Buprenorphine.

I am now sleeping through the night.

Kind regards Julie McGowan

[LotteM]

Good advice from Jules. I do want to add that officially the next step after a failing dopamine agonists is to try an alpha2delta ligand, i.e. gabapentin or pregabalin. But that is a slower process as these take several weeks to work. Also, they may not be fully effective when you are still on or especially withdrawing from the Neupro and some time (can be weeks!) afterwards. Opioids work immediately and are usually strong enough to deal with withdrawal effects.

There are official guidelines etc, that may help you and your understanding gp to make an informed choice, but I am too tired now to hunt them down and include the links here. Maybe someone else can step in. Or I can try later if you want.

I hope you get sorted.

[Jules1953 in reply to LotteM]

Hello LotteM, thanks for pointing out this important information about Gabapentin and Pregabalin.

I did infact leave this part out in my previous comment. Due to trying to keep it short, but really I should have included it.

I experienced augmentation due to long term use of Pramipexole and also being prescribed too higher dosage.

While reducing my Pramipexole intake to deal with the augmentation, I was looking for another form of medication to treat my RLS. I saw my doctor and after some discussion I was prescribed Gabapentin.

Then for a number of weeks I took Gabapentin, starting on a low dosage and building up to 600mg per night.

I was using Endone (oxycodone) 5mg for approx one month to help me reduce my Pramepixole intake and it was allowing me to sleep.

Then I heard about Temgesic sublingual 200mcg tablets.

Temgesic is micro dosages of Buprenorphine.

I am only taking 200mcg of Buprenorphine, that is 0.2mg

Such a small amount.

For anyone coming off Pramipexole and Gabapentin it is very important that the reduction is done gradually.

Kind regards Julie

[Hidden]

At only 4 bad nights I wouldn't want to do anything drug wise.

Check your diet and stress levels first and wait a while, there may be a reasonable excuse for your bad nights.

Even at best we are all going to suffer the odd bad night and I would only consider changing my medication after about 4 weeks of bad nights.

[divasmom8]

I am so sorry you are going through this. I too, am on the Neupro patch and at one time was on 4mg. My movement disorder neurologist prescribed 5mg Methadone twice daily and weaned me down to 1mg Neupro. 5 years later I still can’t stop the patch without my body going crazy. My advice is ask for Methadone , it works! DO NOT increase your Neupro, it will make you so much worse in the long run. Best of luck finding something that works for you.