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Re: Neupro or gabapentin encarbil?

Posted: Sat Nov 26, 2016 7:00 am
by badnights
The lack of effectiveness is real. Whether or not its augmentation is not clear to me. The pramipexole at least was initially effective before the early morning awakenings began; the ropinirole hasn't been, but maybe that;s just because your severity has increased. At 0.75 mg ropinirole, you're getting close to the max dose for WED, so it's good to be cautious.

Do you think you're waking up around the time your last dose of oxycodone wears off? It only lasts about 4 hr iirc

Re: Neupro or gabapentin encarbil?

Posted: Mon Nov 28, 2016 11:17 pm
by Sojourner
Madmom02 wrote:Beth, I was on sinimet in the mid 1990's.

My current neuro put me on .125mg pramipexole in mid-August of this year. Initially it stopped the RLS completely.

At about 22 days the RLS started waking me rlat 4-5am and then the pramipexole stopped working at all. He increased the dose to .375mg on 9/14 but the RLS continued to alwake me at 4am-ish and the severity increased during the day.

I quit taking it on 9/21 (according to my log I cut back to .125mg first).

Took nothing 9/21-9/27. I think that's when I experimented with the oxycodone but I can't find my log pages for those days.

Retried gabapentin 9/27-10/1 with ensuing depression and no effect on the RLS.

Started .25 ropinirole 10/6 - no effect. Dose increased to .5 11/3 - inconsistent effectiveness.

Dose increased to .75 on 11/8. RLS was a a little more tolerable at night.

On 11/10 the RLS started waking me in the early am. Originally it was 12:30 or 1:30, then it shifted and since 11/21 it's been waking me up at 3-3:30am (There's a lack of clarity in my first posting about this. I meant after midnight, not early am).

I've been taking .25-1.0 clonazepam all along because occasionally it will, with the trazadone, give me 4-5 hours of sleep. I also continue to take 2.5-5mg oxycondone 3x day (total 15mg in 25 hours) for my back pain - I suspect (& Dr. B and my neuro agree) that it may be masking the severity of the RLS.

Maybe its not augmentation. But, the ropinirole isn't working.



Your post reminds me of how important it is for us to keep track of our medications. I know that your current log has more to do with daily tracking of your current regimen and congrats to you for faithfully tracking your current meds. I would urge everyone to keep a record or all their meds. Maybe not as comprehensively as your current daily log is, but a record documenting what meds you have taken, dosages, stop/start dates and perhaps a brief synopsis of how it went. This would be extremely important for our younger members and those just embarking on their rls journey. That type of thing can be invaluable down the road. I think I have posted this sentiment before. Looking back, I wish I had done a better job. Lost part of my "history" due to a computer failure so perhaps also a good idea to print out a paper trail every not and then.

Good luck with your current med. trial.



Wishing all who visit here some peace this night.

Re: Neupro or gabapentin encarbil?

Posted: Wed Nov 30, 2016 9:22 am
by badnights
sojourner wrote:Your post reminds me of how important it is for us to keep track of our medications...... That type of thing can be invaluable down the road..... perhaps also a good idea to print out a paper trail every not and then.
I agree completely. I can't remember anything anymore, but even my pre-WED brain would have been challenged to remember the details of everything I've taken over a 10-year span.

Re: Neupro or gabapentin encarbil?

Posted: Thu Dec 01, 2016 10:23 pm
by ViewsAskew
badnights wrote:
sojourner wrote:Your post reminds me of how important it is for us to keep track of our medications...... That type of thing can be invaluable down the road..... perhaps also a good idea to print out a paper trail every not and then.
I agree completely. I can't remember anything anymore, but even my pre-WED brain would have been challenged to remember the details of everything I've taken over a 10-year span.



Agreed!

Re: Neupro or gabapentin encarbil?

Posted: Fri Dec 16, 2016 9:00 pm
by Madmom02
I agree, too. I will caution against keeping too detailed a log for too long about medical stuff, though because it can make you focus on it too much. I only kept my sleep log so detailed because I felt my neurologist was dismissing me. I don't think that anymore. I think he just didn't know how severe RLS can be.

But, yes, keep a log of your meds and reactions to them! My current hospital system uses a great record keeping system but it only goes back so far and the nurses/techs/docs use their own wors and "giant hives" turns into "rash".

Cheers to all!

Re: Neupro or gabapentin encarbil?

Posted: Sat Dec 17, 2016 2:50 am
by Madmom02
For anyone following this post -I saw the sleep doctor on Wednesday. She's brilliant about RLS! She's taking me off the ropinirole and suggesting trying the following in this order:
1. Opiates (but at a higher dose and different frequency than what I'm taking for the back pain)
2. Methadone
3. Horizant
4. Neupro

Not sure what I'm going to do yet. But, I'm very glad to have found her!

Re: Neupro or gabapentin encarbil?

Posted: Sat Dec 17, 2016 12:46 pm
by ViewsAskew
Yay!