4 mg. Ropinerole Extended Release

[Stainless]

So I see the doctor yesterday, tell her I get about 22 hours of relief from 1 mg., an hour or two RLS dancing before I go to bed and a little breakthrough during the day. I am concerned about augmentation and would like to explore alternatives before I augment. She tells me if I get a couple of years on ropinirole that would be a success and submits a script for 4 mg. ropinirole extended release and shuffles me out.

I get home an hour later, call Prime Mail pharmacy, am told it costs $260 for 90 and it has already shipped. I fight with them for an hour to try to stop it. They have no mechanism to stop and order once filled. How convenient.

So now I have to find a new doctor and pharmacy. What a system.

Has anyone had success with this high a dose of extended release. I'm scared to even try it.

[Stainless]

I forgot to ask; can extended release pills be cut?

[jul2873]

My doctor ordered the neupro patch for me, and I just didn't pick it up for awhile. Then I decided to try it after all, and the pharmacy told me they had sent it back, since I didn't buy it. So I bet if you just don't pick it up, they will find a way to return it.

[Polar Bear]

You cannot cut Ropinerole extended release medication.

[Stainless]

Thanks for the replies. I should have done a search for splitting pills, it is amazing what you can find.

I'm very conflicted about taking such a high dose of ropinirole besides the cost. From what I have read it would practically guarantee augmentation. Does anyone disagree?

I am about ready to go back on clonazepam. It is a terrible drug but it worked well for me and had virtually no side effects except increased odds of Alzheimer's and a nightmare to get off. Unintended consequences.

[stjohnh]

Well, in another thread was a very recent report by German neurologists that successfully treated augmentation by switching from one long acting DA (ropinirole ER was one of the medicines) to another long acting DA (the other 2 were Mirapex ER and Neupro patches). Additionally, the IRLSSG white paper on augmentation has as one of the options moving from a short acting DA like ropinerole to a long acting DA. So, while I don't think there is really good evidence that this switch will definitely help, there is suggestive evidence that some RLS specialists might agree that this is reasonable way to go.

I would however consider asking the doc for the 2 mg ropinirole ER tablets. Seems a little odd to go from 1mg short acting that was working fairly well to 4mg ER.

For avoiding augmentation, some here on this Forum alternate their dopamine Agonist with another class of medications periodically, some every few days, some every few months.

I have just come off a 10 day no-DA break after a two-year spell with dopamine Agonists and am now back on it, at a much lower dose after having my dopamine receptors re-sensitized. I will probably alternate now, but I have yet to decide on the schedule. I am considering 10 days off DA and on Kratom every 2 months.

[ViewsAskew]

In what I've seen, the extended release doses and the immediate release are about the same. So, if you need just a bit more, than at the most, you'd want a 2 mg dose. Holland's logic seems good to me.

[Stainless]

I agree, 2 mg. of ropinirole extended release would probably be the ticket for me but more than I hope to pay for a maintenance drug. I was having such a hard time communicating with my doctor when she ordered the 4 mg. the dose got past me. My doctor looked at me like I had a third eye when I talked about being proactive about augmentation.

I'm still fighting with the mail order pharmacy for a refund but that is an uphill battle. They now tell me it is Law that they fill a script! Prime Therapeutic is owned by my insurance company Blue Cross so I am going that route. I plan to cost them more than the profit they made one way or another.

I have an appointment with a neurologist 2 hours away who specializes in movement disorders and RLS. I plan to get a reading on alternating meds or DAs or even an opiate. I did a lot of research and found that every GP doctor seems to advertise "treats RLS" which makes it hard to find someone who really knows RLS. I hope to not go back to clonazepam and encourage anyone else to not do the same. Nasty stuff.

[ViewsAskew]

Let us know what happens.

[Stainless]

Back from my first visit ever to a Neurologist. I was underwhelmed even with low expectations. Half way through I was sure I was going back to Clonazepam. Both my GP and this doctor agree the path I’m on with RLS and DAs causing bigger risk of Alzheimer’s than the Benzo. I just hope the Clonazepam works as well as it did when I quit. Seems like the RLS is a different animal six months later.

I had a good half hour with a movement doctor who was well versed and very nice but had little to offer from where I’m standing. I could go on an extended release DA and live with breakthrough and fear of augmentation. I didn’t get to talk Opioids because lack of time but also because I can’t see that would be better than the Benzo. I did hear several radio pieces about the war on opium on the three hour trip over and back.

Before I went this morning I looked up Neurpo @ $575, Horizant @ $115 and Ropinirole ER @ $87 a month. The doctor did offer up Lyrica @ $176. I’ve never paid $60 a year for Clonazepam. I don’t mean to be cheap but my current insurance will not pay a penny until thousands are spent in deductibles and it is only getting worse. Is this what the community is paying?

At this point I wished I had never heard of the Canadian Benzo study. Unknown increased chance of Alzheimer’s vs. loss of quality of life now. I kind of feel bad spreading knowledge of the study but everyone should know what they are up against. I tolerated Clonazepam very well and it gave me 22 – 24 hours relief a day, I slept all night and had no hangover for 20 years. It would have been hard to do what I did for a living without it.

I refused the mail order Ropinirole ER and it was sent back. Don’t know if I will ever be reimbursed. I have a paper script and a discount drug card from the GP, so I might as get a month of ER local just so I can say I tried it. At 4 mg. it should do something. There are just so few meds that work with RLS and several of them you can’t tolerate, several don’t give you relief and several you can’t afford. Thanks for listening. Sorry I went long. Rick

[stjohnh]

My Neupro patches are $2000 for 90, 1mg/24h. I pay $300 and insurance pays the rest .

[ViewsAskew]

Medication costs can be very, very high. It seems crazy to me...but I won't get into that. But, I hear you, Rick. I was happy when Neupro samples didn't work - I didn't want to find out how much they cost.

If a benzo really works and you have no issues stopping them...then I say use them! Opioids work for many more people than benzos - which is primarily why benzos are not considered a first or second line option. But, they do work for about 25% if I remember the stat correctly.

[QyX]

Opiods are way better then any Benzo.

What kind of quality of life is that when taking a Benzo is causing more and more memory problems?

Benzos are perfect for taking them as needed but taken on a daily basis they almost ever cause much more trouble then solving them.

When augmentation is an issue, opiods are for sure the best treatment option and drugs like Methadon ore Morphine are also very cheap compared to all these DAs and antiepileptics.

[Stainless]

Has anyone out there had success with extended relief DAs? I'm up to 2 mg. regular ropinirole but 4 mg. seems to invite augmentation regardless of how it is administered. I may be augmenting now based on when symptoms start but that changes day to day. Last night RLS kicked in early so I took a mg. early to go out with friends only to pass out sitting up at dinner.

I only quit benzos because of fear of Alzheimer’s, not because anything I experienced. But I do think there are consequences to taking them and would not be surprised if it increases your chances for this horrible disease.

What to do now? A new doctor, a new med, back to the old med? I'm very frustrated and it is 3 months until I see a doctor again. Rick

[Rustsmith]

I had success for a while by moving from pramipexole to Neupro. Neupro (rotigatine) is an extended release DA that provides DA continuously to your body throughout the day. The idea is that you reduce the chances of augmentation by avoiding the highs and lows between pills of pramipexole or ropinirole. Therefore, the extended release forms of pramipexole and ropinirole should do somewhat the same thing even though they use a different way of achieving the extended release of DA.

However, with all that said, I also augmented on Neupro. It took me a bit less than a year to augment on pramipexole and a little over 15 months to augment again on Neupro.