This is my 8th day of withdrawal from ropinirole. My doctor is unavailable and if I go to the ER they'll think I'm looking for a cheap high. I could use some reasonable advice. I am now taking 1 mg of Ropinirole in the afternoon and another in the evening for 3 more days and then 1 mg . Then 1 at night for 3 nights and then stop. My only med. to get me through is Suboxone. which I take once a day at night, A strip of suboxone. It isn't working.
My major side effect are severe RLS to the point of whole large muscle spasams / convulsions . flue like symptoms, slower breathing . , blurred vision. Any suggestions as to what I might do / Please
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Oh I'm not at all worried about what they think. I'm worried that they don't know how to treat RLS.. I couldn't stand to be in bed right now. I've had that experience before, it was hell.
I agree with Madlegs. The only thing I could come up with was "slow doen, you move too fast". I do hope things settle a bit when you stay at you current dose. It seems your schedule involves big fast steps. That may be beatable in the first part of the tapering but will get progressively worse. Especially the last part will most likely be difficult. Take smaller steps and wait for the increased symptoms to settle a bit before you go on to the next reduction. Furthermore, if they don't settle, share your experience with your doctor and try to get more or a stronger opioid temporarily,i.e. during the tapering / withdrawal.
Incidentally, what are you goi g to use as a replacement medicine? If gabapentin or pregabalin, it may be useful to already start it. The build-up also requires some time and small increments.
My doctor thinks that I may not need anything to replace ropinirole because my RLS was caused by anemia which I was given ropinirole for, which augmented. I've had several iron infusions which helped. If I still have RLS after withdrawal is over I will try the gabapentin .He does intend to start it before that happens. I am desperate to get off the Requip , I won't be giving up. Thank you for your very helpful reply.
I agree with M and L you're trying to reduce the Ropinirole too fast.
Anaemia isn't the only cause of RLS, doesn't your doctor know that?
Idiopathic RLS or Willis Eckbom Disease, (WED), is a lifelong genetic disorder.
You could perhaps try informing your doctor of that.
If you have WED then you will neef something to replace the pramipexole. I usually suggest gabapentin.and that you start it BEFORE reducing the Requip.
I don't understand what you mean, my statement about anemia being the cause of my RLS was only intended to mean me. The man I see studied with Dr Buckfuhrer and follows his methods of treatment. Any misinformation would be from me. I'm afraid I am not thinking clearly at the moment. Thank you for the advice , I'll get sorted in the morning.
I feel for you for what your going through I started Gabapentin last week and will start coming off Ropinirole next week and i'm a bit worried about the withdrawal. You should go to ER if your Dr is not available i would that's what they are there for, I am new and don't know a lot about RLS just what iv'e read on here and i think it boils down to Doctors and hospital not knowing enough about RLS
Yes, I too think you are trying to taper down too quickly. What mg size pills of ropinirole do you have? Do you have a pill cutter so you can cut them in half or even quarters, you will particularly find that useful towards the end? Could you suggest to your doctor (when you can get to see him) that you start the gabapentin (tapering up to at least 900mg) now, but you try coming off that to see if you still have RLS once you've been off the ropinirole for a while? Wishing you all the best.
I agree with Guitar Bear. Blow what the people there think, they probably haven't had RSL so they don't know the misery it can cause, and may not be aware of how long term it is. If you DO go you should take your form for repeat prescriptions so you can prove that you are NOT abusing the service they provide.
Just one thing, is there not a GP at your surgery who is looking after his/her affairs while he/she is absent? If not, ask if there is a GP seeing to minor/situations that need more immediate attention.
You've obviously been thinking about the negative aspects of going to the ER so you could consider how to respond if the staff don't appear to be supportive. Also EMPHASISE the length of time you've had RLS, and the likely reaction if you are not able to get them to provide a supply or a prescription for medication. If they say that you should go to your GP, stress the situation at your GP surgery i.e. a stand in GP stating that THAT is precisely why you've come to the ER.
Sorry to sound so long-winded but I hope that you can get help from either the GP or the ER.
One last point, you might find someone there who can and does provide some help/advice.
Hi there Ive just had the same experience coming off Rotigitone I had been given Gabapentin and was taking 1200mg and that wasn't enough. On posting like you I was advised on here that others had all been treated with opiates as well so I took 2 co-codamol I had In the house in desperation and after much persuasion I now have codeine phosphate 30mg and take 2 when I wake up. I take the gabapentin before I go to bed. Not perfect sleep all night but lovable with.If your Gp is unavailable telephone 111 and explain the problem because you should have been given a substitute for the ropinirole as withdrawal as we all know is horrendous. The 111 will then arrange an emergency doctors appointment at a local centre. This is what I did a week ago when I was dispensed the wrong prescription over a weekend. Hope this helps and good luck. If you are anywhere needs Leeds UK I would give you some of mine. Good luck x
Why are you getting off the ropinerol? Is it not working?
I wish I could advise you more. Call the Doctors office and maybe they can help. Mean time, check your health store for Magnesium Jelly. Rub this into the foot and calf to the knees, Also, take a warm bath soak before the magnesium. It will definitely give you some help. Problem is , it is time consuming . I am a physical therapist retired. This has helped me on occasion, I am impaired and can not get out of a tub Ha. Try it and good luck. Is yhe Doc going to us Horizant Gabapentin?It is made to help RLS. The neutine (SP) Gabapentin IS NOT FOR RLS. 300 capsules instad of 600 Pills are for seizures and nerve healing, not RLS. Brands are different in US vs UK.
Hi Bill, I thought we'd straightened this out, gabapentin and pregabalin ARE used for RLS and are known to be effective.. It's true they're mot "licensed" for RLS, at least in the UK. They ARE licensed for seizures and nerve pain, true, but they are recommended and commonly prescribed for RLS "off label"
"gabapentin", "gabapentin enacarbil" and "pregabalin" are their "approved" or "generic" names and the names used everywhere in the world for the actual drug.
Particular pharmacy manufacturers, i.e. the guys that make them, may give them different brand names. It's the brand names that may be different in different countries.
Confusing I know, I always use the generic name, especially as here, in the UK, doctors aren't allowed to prescribe a particular brand of a drug, unless its patented. They have to prescribe by generic name.
Nanerva In the UK , you indicated you order differently. My 200 MG Capsules of Neurontin Gabpintine ES are not recognized as for RLS. They are Prescribed for Seizures and Nerve repair. The Brand Horizant Gabapintin in larger doses of 600 MG but in slow release pill form and is Prescribed for RLS. The brand Gralise Gapintine is prescribed more for shingles. They are all the same drug Gabapintine . It is a matter if the referring physician being aware. If the Neuronitine brand, is submitted to Medicare, because it is not Horizant, they will not pay for the primary cost. If it is not a medicare drug, the suppliment insurance will not make their payment. Sound confusing, welcome to the US A medicare Program. The Horizant Gabapintine will have its own ICM Code. The code will be for Sleep disorder but the diagnosis code will say Parkinsons (How is that for confusion) This client is using the wrong brand. I hope this explains.
Sorry, I have misunderstood. We don't have such complications in the UK. We have universal health care and a drug is a drug is a dtug.
We get a prescription and we either pay a fixed and !imited prescription charge of about $12 or in a lot of cases, like myself, pay nothing.
It doesn't depend on insurance schemes or codes or any such stuff.. Everybody gets the care that's available.
We have generic gabapentin and generic pregabalin and they are prescribed for seizures, MS, RLS, shingles, fibromyalgia, migraines, nerve pain whatever. It's all the same drug. Any doctor can prescribe.
I believe in your system for many, if they have no insurance or funds, they can't get anything.
Apologies, I really don't envy your health system, I'm glad it's not like that here.
We are slowly getting ther54e Now you know why Bernie Sanders is so popular in our election polls. He may not be elected, but he is forcing more universal care for more people
I apologise for saying, it's not appropriate to make political comments in this forum, but I fear, if things continue as they are currently, it's not just health the US (or the rest of the world). has to worry about.
It amused me, (briefly) to read that despite efforts to build walls, a tunnel over 4 kilometres long was recently discovered under one. This was nearly twice as long as the one previously discovered.
I wonder if its been considered, no matter how long a wall is, it will aways have ends. You can go round them.
It almost prompted me to write a piece on "Great walls of the world : Why were they built and what did they achieve?"
I don’t know your withdrawal schedule or if your Dr suggested it or you determined it yourself. Perhaps that is your current problem; trying to withdraw too quickly even if Dr said it or some commentary said it. Everyone is different and our bodies react differently. You know your body better than anyone! More importantly, you know how you feel! As a nurse, I am familiar with “ drug seeking” behavior. Unfortunately the medical profession is partly responsible for this! Patients are put on these medications then chastised if they get addicted. They also are not always given the best advice on how to taper the drug. I have said all this to say to you.... GO quickly to the ER. Explain your situation. Take your pill bottles so dayes can be seen. Write down your symptoms, times of occurrence, schedule of drug tapering. Be honest and upfront with all your concerns! YOU didn’t start this remember! Neither did you choose to have this diseases. Do not leave until you are satisfied with treatment and instructions given! Speak with a supervisor or patient advocate if necessary. Most hospitals have them. Do not let your FEELINGS get in the way! They are the ones who took an oath to first,
DoNoHarm!
Best to you and stay in touch!
As you have been diagnosed as anaemic with restless legs then if you are not taking enough vitamin d and k you may find your iron is not absorbed. If you say your iron levels are ok are your vitamin d and calcium levels alright? If your calcium is too high with lower magnesium then restless leg syndrome might present . As you believe it is augmentation then dopamine agonists in drugs will stop dopamine triggering restless legs. Expect you have had calcium and vitamin d levels checked as they will make a difference to your iron levels and could be parallel symptoms to augmentation. Vitamin D is essential to the dopinergic system.
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Getting No Help and feeling desperate
Desperate! where can I go for private help for ILMD?
What really helps?! I'm desperate for some decent sleep! 
