Page 3 of 5
Re: new member - transitioning from ropinirole to gabapentin
Posted: Wed Dec 30, 2020 6:42 am
by badnights
At least you're getting some sleep now. I hope things go well for you!
Re: new member - transitioning from ropinirole to gabapentin
Posted: Wed Dec 30, 2020 7:44 pm
by Rustsmith
A post by stephenstrumMD on iron IV treatments have been moved to a new topic in the Prescription Medications forum with the Subject "Iron IV Treatments"
Re: new member - transitioning from ropinirole to gabapentin
Posted: Sat Feb 13, 2021 9:28 am
by tagalongbuddy
This has been my experience: First I was on pramipexole for a couple of years, I began to augment. Then my neurologist switched me to ropinorole instead. Then a couple more years--I began to augment again. So the neurologist had me slowly taper off the ropinorole and take oxycodone for 10 days. This was very effective, the first day or 2 was hard but then I was fine. After the 10 days, he said to very slowly begin ropinorole. After a couple of months he increased ropinorole slightly then started me on gabapentin and increased as well. I told him I'm afraid of going through augmentation on ropinole again. He said he will keep the dosage fairly low (6mg daily) and believes the higher dosage of gabapentin will help. He said gabapentin is not as effective by itself for RSL. So I am on both meds, 65 mg iron and he told me to get vitamin B-12. I seem to be holding pretty steady with this plan.
The majority of the meds are taken in the evening cause it can wipe me out at times.
Re: new member - transitioning from ropinirole to gabapentin
Posted: Sat Feb 13, 2021 12:06 pm
by Polar Bear
tagalongbuddy - I'd like clarify your medication. Are you saying that you are on 6mg Ropinerole daily and that this is what your neurologist is calling a low dose?
The pharmaceutical company generally says Ropinerole is ok at up to 4mg max daily dosage but the RLS Experts from their experience of treating sufferers would say that 1mg is the max daily dose to avoid the issue of augmentation.
I wonder what experience your neurologist (the guy you expect to know) has in the treatment of RLS. If you are really on 6mg daily it is way way too high. It also concerns me that all of the RLS patients of this neurologist could be on such a high Ropinerole dosage.
Ropinerole is used in the higher doses for Parkinsons disease but definitely not for RLS.
You will need to be reducing/coming off the Ropinerole with medical help and I think you need to find yourself a different Neurologist.
Are you aware of your ferritin serum level. Has your neurologist ever checked this.
Re: new member - transitioning from ropinirole to gabapentin
Posted: Fri Mar 05, 2021 3:38 am
by bhud
I have not been on the discussion boards since December. I am sharing an update tonight because it is helpful to me to share, and I hope it is a help others who are at various stages in their own RLS journey.
In February I had to increase dose of ropinirole to .75 mg and then to 1 mg. I did not want to go above the 1 mg dose per day and my neurologists agreed. By the end of February, my RLS prevented sleep at 1 mg of ropinirole so my doctor put me on pramipexole. Last night, March 3, I was able to sleep on .5mg dose but tonight I had to increase to .75mg. Hopefully, I will be able to sleep. The pramipexole makes me feel more sedated than ropinirole.
I had blood work in February and my iron levels were up. I cannot remember the numbers but it was a significant improvement from blood test several months ago. I am continuing to take iron supplements.
If pramipexole is not effective, then neurologist will probably try the patch. He is willing to prescribe opioid, but wants to test all other options first. I had good sleep for about 2 months, and it is hard to see that slipping away.
Re: new member - transitioning from ropinirole to gabapentin
Posted: Fri Mar 05, 2021 3:48 am
by Rustsmith
The normal recommendation for the max daily dose of pramipexole is 0.5mg. If it is taking 0.75mg to keep your symptoms at bay, then you are experiencing augmentation (I know because I have been on that dose myself). Be careful with driving while you are on this dose. I had to limit my time behind the wheel to just 30 minutes before I would stop to take a nap. The chance of falling asleep while driving is much higher than normal.
Switching to the patch probably won't fix anything, but that is a decision that you and your doctor need to make. Just be aware that the 3mg patch is the max recommended for RLS (there are 4 and 8mg patches for Parkinsons).
When it finally comes time to give up on the DAs, push your doctor pretty hard to allow you to slowly taper the DA dose AFTER you start whatever opioid that the two of you agree upon. Abruptly stopping a DA from the dose levels that you are currently taking can cause DAWS, which is a permanent neurological condition that cannot be treated, but hopefully your doc is well aware of this.
Re: new member - transitioning from ropinirole to gabapentin
Posted: Wed Mar 10, 2021 2:18 am
by bhud
Steve,
Thank you. I stopped taking pramipexole and told my neurologist that I was unable to sleep using it. Using it also left me feeling sedated all day but unable to sleep. Today, I started the neupro patch at 1mg/24hour release. I don't expect this to work, but apparently this needs to be tried before my doctor will consider opioids. I was told to try this for several days, so it looks like I am in for some long nights ahead. Maybe I will be surprised and the patch delivery will be effective at least for a few weeks.
Re: new member - transitioning from ropinirole to gabapentin
Posted: Wed Mar 10, 2021 4:25 pm
by Polar Bear
You are now trying the patch and I hope it works for you. However, it's great to know that if it does not work your doctor is willing to consider opioids. This in itself is a reassurance.
Re: new member - transitioning from ropinirole to gabapentin
Posted: Sun Mar 14, 2021 5:39 pm
by Fishfood
I'm new here. I definitely recommend opioids. My RLS started after the last of 3 successful spinal surgeries. Out of nowhere one night my feet just started hurting. Pins and needles, sharp pain, dull pain. Typical from what I've been reading here. 5 month later, opiods are the only thing that gives me relief. So far Gaba and Requip and Baclofen are just changing the symptoms but not reducing them by much if that makes sense. Also getting augmentation with the Baclofen. I think even though I'm miserable, I'm lucky because the pain cycles every 3-4 days so I'm only taking a couple Norco a week. The other nights the Baclofen gives me a decent nights sleep. You really don't realize how much pain you are dealing with until it gone. I'm alway surprised at how much relief I get from the Norco. It just works.
My neurologist has been using the Norco as a gauge of whether the meds are working. Since my cycles were previous 2-3 days the meds are definitely having some effect and so the process continues. It's just nice to have a night off from the pain a couple times a week.
Re: new member - transitioning from ropinirole to gabapentin
Posted: Sun Mar 14, 2021 6:28 pm
by stjohnh
Hi Fishfood, welcome to the forum. Your symptoms are not really typical of RLS. Most RLS patients do not have any pain. The primary symptoms of RLS are urge-to-move legs, especially in the evening, with near immediate relief with getting up and walking around. Additionally it is very rare for Requip to not work (at least initally), and use of Requip (or other similar meds) is sometimes used as a diagnostic test for RLS (if Requip doesn't work, the patient probably does not have RLS). Anyway, welcome, and I'm glad you have a solution to your problem, but you don't have typical RLS. That's not to say you don't have it, but that your symptoms are not the usual.
Re: new member - transitioning from ropinirole to gabapentin
Posted: Sun Mar 14, 2021 10:28 pm
by Polar Bear
Neuropathy crossed my mind.
Re: new member - transitioning from ropinirole to gabapentin
Posted: Mon Mar 15, 2021 2:38 pm
by Fishfood
Thanks so much for your responses. I question the diagnosis every time I talk to the neurologist and he takes me through why it's not neuropathy (I passed the all the peripheral nerve testing with flying colors for one) and discusses the other patients he has with the same symptoms, post spinal surgery. One in particular has the exact same situation as me and requip had immediate results. I feel like we are just on a journey through the list of meds hoping to find one that'll work. After the last couple nights, I'm thinking it's not going to be Baclofen.
I know I'm relatively lucky considering the stories that I've been reading here since my problem cycles and the meds have given me a lovely nights sleep when the pain doesn't keep me up but boy, this sucks.
Re: new member - transitioning from ropinirole to gabapentin
Posted: Thu Mar 18, 2021 3:41 pm
by bhud
The 1mg dosage on the Neupro patch was not effective after a couple of nights, and my doctor increased it to 2 patches for a total of 2 mg. I slept great for one night. The next two nights I got little sleep and felt disoriented especially in the afternoon. My doctor is out of the office until Tuesday, but I spoke with the nurse who will pass my message along to the doctor but told me I may not get a response until Tuesday. I was basically told to discontinue use of the Neupro if I felt that was what I should do and try what I could to get some sleep.
Any recommendations on what meds to use to get some sleep between now and Tuesday? In the last several months in addition to the patch, I have tried ropinirole at 1 mg (had to stop due to augmentation), gabapentin at 600 mg but it was not effective maybe due to augmentation from ropinirole, and Horizant (not effective and had side effects).
I put on two Neupro patches last night about 8 p.m., and removed them both at 10 a.m. this morning after talking with the nurse.
My thought is to apply one Neupro patch 1mg dosage and take a .5 mg of ropinirole tonight. Drugs.com recommended maximum number of medicines in the 'dopamine receptor agonists' category to be taken concurrently is usually one and a moderate rating on the two drugs interaction. "Using rOPINIRole together with rotigotine may increase side effects such as dizziness, drowsiness, confusion, and difficulty concentrating."
What are you thoughts on my plan and what are your alternative suggestions? I have a few opioids remining from a past medical procedure, but I do not want to use them in case blood test are required prior to my doctor prescribing an opioid.
Re: new member - transitioning from ropinirole to gabapentin
Posted: Tue Mar 23, 2021 3:36 pm
by ViewsAskew
bhud wrote: ↑Thu Mar 18, 2021 3:41 pm
The 1mg dosage on the Neupro patch was not effective after a couple of nights, and my doctor increased it to 2 patches for a total of 2 mg. I slept great for one night. The next two nights I got little sleep and felt disoriented especially in the afternoon. My doctor is out of the office until Tuesday, but I spoke with the nurse who will pass my message along to the doctor but told me I may not get a response until Tuesday. I was basically told to discontinue use of the Neupro if I felt that was what I should do and try what I could to get some sleep.
Any recommendations on what meds to use to get some sleep between now and Tuesday? In the last several months in addition to the patch, I have tried ropinirole at 1 mg (had to stop due to augmentation), gabapentin at 600 mg but it was not effective maybe due to augmentation from ropinirole, and Horizant (not effective and had side effects).
I put on two Neupro patches last night about 8 p.m., and removed them both at 10 a.m. this morning after talking with the nurse.
My thought is to apply one Neupro patch 1mg dosage and take a .5 mg of ropinirole tonight. Drugs.com recommended maximum number of medicines in the 'dopamine receptor agonists' category to be taken concurrently is usually one and a moderate rating on the two drugs interaction. "Using rOPINIRole together with rotigotine may increase side effects such as dizziness, drowsiness, confusion, and difficulty concentrating."
What are you thoughts on my plan and what are your alternative suggestions? I have a few opioids remining from a past medical procedure, but I do not want to use them in case blood test are required prior to my doctor prescribing an opioid.
SO sorry I missed this post! How did it work? Today is Tuesday. I hope you managed some sleep in all of this.
Re: new member - transitioning from ropinirole to gabapentin
Posted: Wed Mar 24, 2021 2:31 am
by bhud
Ann,
It is okay that you did not see my post until today. It was helpful for me to post and capture my thoughts. I went back on ropinirole at 1 mg and was able to sleep about 5 hours on Thursday, March 18, I had to go up to 1.25 mg by Saturday and by Monday night I only got spotty sleep 11 p.m. - 1 a.m. and 6:00 - 8:00 a.m.
I called doctor office today, March 23, and spoke with nurse. The nurse is trying to get me an appointment but the first available on April 20. Trying to get a telemedicine appointment sooner. Tonight I took 1.5 mg of ropinirole but when I try to sleep my leg movements and RLS sensations are very pronounced. Looks like I will get little to no sleep tonight and I have a full day of work responsibilities tomorrow.
I will call doctor office again tomorrow and hopefully find an opening for appointment soon.