new member - transitioning from ropinirole to gabapentin

[bhud]

I was able to get completely off Ropinirole in August and I am taking 12.5 mg of hydrocodone at night and getting good sleep. I can also nap in the afternoon without any RLS symptoms. I feel like I have gotten my life back. I am also playing Pickleball 2 to 3 times a week. The exercise is helpful but getting off Ropinirole and adding the hydrocodone has been the difference maker.

Hopeful for continued research on RLS and new treatments that will get out to the medical community. Thank you for all the support from everyone on this discussion board.

If you are in a hard spot with your RLS journey, do not lose hope. Keep searching for the right doctor and treatment plan for your RLS.

[Polar Bear]

Well done in getting off the ropinerole, I know how difficult this is. What a wonderful outcome. It is good for other sufferers to know there is hope.

[badnights]

@bhud that's great to hear!

[Fly007]

I really wish more Dr's would be open minded to Opioids, Gabapentin has my RLS under control for the most part, but makes me feel like a depressed anxious zombie. Just saw a Neurologist at the Mayo Clinic in Eau Claire and he wants me to try Ropinirole even though I severely augmented on Pramipexole. When I questioned him about it he said that DA's are the first line treatment and he has tons of patients taking it and are doing just fine. I even pointed out the Mayo clinics own study about DA's and augmentation, his response was "Well we can increase the Gabapentin to 1200 if you would prefer".

[Rustsmith]

That is just plain outrageous!

He claims that dopamine is still a first line treatment and wants you to try ropinerole after augmenting on pramipexole? And even after pointing out a publication by his own organization?

You absolutely need to find a different neurologist.My normal suggestion is to call all of the doctors in your area who accept your insurance, ask to speak with a nurse and ask 1) is your doctor familiar with treating RLS patients after augmentation and 2) will your doctor prescribe opioids to treat chronic conditions.

If you don't have any luck, try calling the neurology department at the nearest major medical school and ask the same questions.

[JVR]

My RLS symptoms are tingling sensations on my calf muscle below the knees.I started with 0.25mg of pramipex 15 years ago and went upto 0.75 mg.As the RLS symptoms worsened presumably due to augmentation, the neurologist in HONG KONG changed to 4mg of Roprinole two years ago. Initially felt ok but RLS symptoms worsened with experiencing RLS even in day time.Consulted a sleep doctor in Kaiser 3 weeks ago and he prescribed Gabapentin and tapering of Roprinole.Since last 15 days i am on revised medication. Currently 2mg of Roprinole and 600 mg of Gabapentin.( Taking self decided dosage of Gabapentin 300 mg at 3pm , Roprinole 1mg at 5PM ,Roprinole 1mg at 7PM and Gabapentin300mg at 9PM ) Feeling much better with RLS in day time now and better sleep in night time).Planning to get out of Roprinole totally and continue with Gabapentin 900mg only ( 3 times of Gabapentin 300mg ) in next two to four weeks.Thanks to this RLS forum .
My question is.. I have planned for total knee replacement in a month time and wondering how to tackle RLS below the knee as i would not be able to move my leg for few days after the knee surgery.Secondly i am hoping the anesthetist will be able to take care of RLS if happen to get RLS during surgery.If any one has these experiences , please share or any suggestions in this regard .

[Polar Bear]

JVR - Well done on weaning off the ropineriole. You may find that as you get lower the gabapentin isn't sufficient to cover your symptoms. If this happens a low dose of a low opioid would help greatly with this. Do you think your doctor would work with you on this.

Regarding your upcoming surgery it is likely that the pain relief you are given following surgery will be sufficient to cover your rls symptoms.

During surgery there are certain anaesthetics that are better for RLS than others. I don't know which off the top of my head, to do with the antihistimines. I'll try to clarify soon..

[Rustsmith]

JVR, if you are a member of the Foundation, they have a couple of pamphlets about RLS and surgery. One of them specifically addresses the things that an anesthesiologist can and cannot use. For my last 3 hand surgeries, I have printed that out, highlighted it and gave it to the anesthesiologist during his visit just before surgery. In each case, the doctor looked it over, said that it wouldn't be a problem and thanked me. In each case, we joked that the last thing that any of us wanted was for me to start moving around while the surgeon was working.

If you are not a member, it would be well worth the minimal expense to join in order to get access to that pamphlet prior to your knee replacement.

[JVR]

Thank you Betty and Steve for very useful suggestions.
I am a member and could trace the pamphlets in the portal.Very informative and useful exactly what i wanted.
Will update after the surgery.
JVR

[JVR]

Hi Betty and Steve,
Please refer to my post dated 15th Feb giving my background of RLS.I started the revised medication of tapering of Roprinole of 4mg (Was taking Roprinole for 2 years) on 1st Feb with Gabapentine 0f 300 mg , two times one at 3 PM , followed by Roprinole of 1 mg at 5.30PM , and Gabapentin 300mg at 7.30PM and finally Reprinole of 1mg at 9.30PM.It seemed to be effective for few days esp in day time but then RLS symptoms are back last night though could catch up of 3 hours of sleep in early morning.
My sleep Doctor who correctly diagonised Augmentation prescribed tapering ofRoprinole in 6 weeks while i tried to fast track especially
due to my impending knee surgery in April.Not sure whether this was right approach.
My Iron level 151ug/dl,Ferritin 161ng/dl,Iron binding capacity 271ug/dl,Total Iron binding capacity 422ug/dl,Transferrin 36%, Magnesium 1.8mg/dl
Now confused how to go about tapering of Roprinole as last night was bad.Any suggestions.

[Polar Bear]

I have symptoms 24/7 and can only tell you how I did it which was much longer than most folk. I was on 5 mg ropinerole daily plus cocodamol and had been for several years.
I weaned off very gently over 10 months increasing pregabalin (a sister drug to gabapentin) as I reduced the ropinerole and I also continued to use the cocodamol. I am still using pregabalin and cocodamol at max daily dosages. My pregabalin was actually prescribed for neuropathy and lucky for me has the bonus of helping rls.

[Rustsmith]

JVR, although gabapentin may be enough to address your RLS once you have gone through augmentation, it is not strong enough by itself to cover the increased RLS (both movement and insomnia) during dopamine agonist withdrawal. The only meds that can cover withdrawal are opioids (such as Betty's cocodiamol, which is a tylenol/codeine mix). Unfortunately, most doctors are too scared to prescribe opioids these days, even the weak ones like codeine or tramadol. You might ask your doctor for a short term supply of something like cocodiamol, which is known as Tylenol 3 or 4 in the US, or tramadol since these are often more palatable to doctors. Without an opioid, the only option left is to suffer through what may end up being the most difficult thing you have ever experienced.

[JVR]

HI STEVE,
Further to my last post of 15th Feb, I underwent knee replacement surgery 7 weeks ago of my left knee in India.Post surgery i was prescribed Tremadol which also helped to manage RLS. My tapering plan of Roprinole of 4mg to Gabapentin 300 mg had to be adjusted due to surgery. I restarted the tapering plan since last 2 weeks with Gabepentin 300mg at 3PM , Roprinole 1mg at 7PM ( From 4mg in Dec 22 and 2mg in Feb 23 ) and Tramadol 50mg at 9PM .Though RLS seems manageable and I am able to get sleep of 4 to 5 hours in the night , i feel restless in the day time like not able to lie on bed for more than 10 minutes at a stretch and not feeling like doing any thing at all contrary to my nature.Is this due to tapering of Roprinole ? What are the withdrawal symptoms while tapering of DA like Roprinole?Can any one else share their experiences while tapering of DAs?

[Rustsmith]

Tapering ropinerole or any other dopamine agonist is going to bring on increased RLS symptoms, including the daytime RLS that is due to augmentation. Further, these increased symptoms will be cause the worst RLS and insomnia that you have ever experienced during the first week that you actually stop. Tramadol or any other opioid will help reduce the problems. Unfortunately, tramadol is a weak opioid, so it may not be as effective at controlling the withdrawal symptoms as something stronger might do. When I transitioned off of pramipexole, I was given methadone and I can say from experience that my small dose of methadone is the equivalent of about 200mg of tramadol ER.

I will add that you should if they decide to take you off of the tramadol, ask your doctor about tapering because it is both an opioid and an anti-depressant. Abruptly stopping opioids isn't too difficult but abruptly stopping an anti-depressant can cause Anti-depressant Withdrawal Syndrome, which can take months to recover from and most doctors do not know about the anti-depressant properties because the CDC would not approve it for that use because they didn't want psychiatrists using a pain killer to treat depression.

[Polar Bear]

I can only refer you to my post above where I said that I took 10 months to very very slowly wean off 5mg ropinerole with the support off pregabalin and cocodamol. If I remember correctly, I dropped by only .25mg every 2 or 3 weeks.
This way I never felt any withdrawal symptoms at any time.
My GP knew little about RLS or augmentation and it's treatment and was willing to let me try it my way.