Attempting to get off Ropinirole - again

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EllenSpoehr
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Attempting to get off Ropinirole - again

Postby EllenSpoehr » Sat Apr 07, 2018 12:25 pm

Hello all:

I reached out in the fall because I was making an attempt to get off Ropinirole for the first time in over 17 years. Needless to say, I was not successful. I was able to reduce the ropinirole from 3-4 mgs per day with awful symptoms to 1 mg combined with Horizant using opioids during the reduction period, however, my doctor was hesitant to prescribe opioids as a long term method to manage my symptoms. The obstacles were neverending - insurance refusing to cover Horizant and Lyrica as alternatives - or the opioids beyond a 3-5 day prescription, refusing to cover a sleep study, etc. I was able to stop the ropinirole for a total of one week, but not beyond that as the opioid prescription ran out.

I just went for a second opinion in University of Pennsylvania (doctor listed on this site) and he is suggesting long term management with opioids and forgoing the Horizant altogether. Again, the goal would be to get of the ropinirole for good. I am glad to see the Horizant go as I really do feel that it is causing mood issues. Once again, I faced insurance issues with the opioids as they refused to cover it. I paid out of pocket (as I had in the fall).

I feel like I have been on a roller coaster with no way off and feel that managing this condition with opioids will just be another uphill battle. I welcome any success stories with long term management using opioids as this also concerns me.

legsbestill
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Re: Attempting to get off Ropinirole - again

Postby legsbestill » Sat Apr 07, 2018 1:09 pm

It is probably worth getting off the ropinerole if only to see how bad your base line symptoms really are. How is your serum ferritin? I found getting this figure up helped with symptoms.

As you don’t like Horizant, it might be better to eliminate this also.

There are many on here (and elsewhere) who manage their symptoms successfully/very successfully with opioids but I found it difficult. I was prescribed OxyContin and needed a strong dose (30mg) at night to quiet the legs. This led to an unpleasant withdrawal the following day about 11 or 12 and also I developed central sleep apnea. Moreover, I found that I was profoundly alert at night thanks to the OxyContin which meant I was exhausted in the day.

I took to using Kratom and pregabalin to manage my rls and alternated this with neupro every few weeks. It was reasonably successful but I was still often exhausted during the day. Also Kratom is something of an expenditure.

Recently I have tried dipyridamole - you can find a very long thread about my experiences and those of Holland who is also using it. I don’t know how it would work out with your insurance but of the drugs I have tried dipyridamole is one of the less expensive ones. My current system is the best I have been on since discontinuing pramipexole two years ago.

ViewsAskew
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Re: Attempting to get off Ropinirole - again

Postby ViewsAskew » Sat Apr 07, 2018 6:16 pm

I personally like the idea of using opioids short term - just to get through the worst of it - then seeing what happens.

I am a success story using methadone, but it isn't perfect by any means. If I were to do it again, I'd stop it immediately after and use nothing for a time, even if it were hellish. I do believe it's possible that we need more time to reset receptors and the like before we can really know what it's like. What I don't know is how long that is and if it could be shortened by not using any pharmaceuticals.

I'd also get the ferritin up more quickly. It really did help me and I wish I'd pushed for an infusion sooner. Now, it will not help everyone, but worth it to find out if you are one it will help.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: Attempting to get off Ropinirole - again

Postby badnights » Mon Apr 16, 2018 6:06 am

HI EllenSpoehr. I've been managing my symptoms for 7 or 8 yrs with an opioid (hydromorph contin) after augmenting on each of ropinirole and pramipexole, and getting little benefit and a lot of problem from gabapentin. and trying a few other things. Since I started on the hydromorph, my problems have been few, as follows:
  • I couldn't fall asleep or stay asleep and eventually was prescribed a sleep aid which I still take today (zopiclone)
  • I wanted to sleep all day until we added in an alerting med (modafinil)
  • Until I was able to lower my hydromorph dose (thru diet changes), I couldn't have an orgasm.
Other than that, the medication has been a godsend, and I can't say if the first two items are due to the hydromorph or were there anyway (for example, my symptoms were so bad I wouldn't have noticed if I also had insomnia). the inability to orgasm was just the most obvious sign of broader changes to the endocrine system but I've had a hard time getting solid information on those changes. not everyone agrees.

If I had it to do over again, I would get my ferritin up right away, I would change my diet right away (eliminate gluten, dairy, added sugar, additives, and modified oils; reduce carbs, increase fats, ensure abundant vegetables of many types), I would make sure my hydromorph dose never got above 12 mg daily, and I would immediately stop trying to lead a normal life and instead I would understand that I needed to reduce my expectations and cut back on everything.

And if I had control over anything, I would never ever have taken a DA. And I would never ever have taken gabapentin, which made me suicidally depressed.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

67java89
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Re: Attempting to get off Ropinirole - again

Postby 67java89 » Fri Dec 07, 2018 10:01 pm

I've been trying to get off Ropinirole for 4 years, also unsuccessfully. It seems to be the only thing that works. I am currently experiencing augmentation symptoms. I really think that doctors don't understand/know how to treat this disease. Keep fighting and I wish you well on your journey!
Sleep is a basic need.

Rustsmith
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Re: Attempting to get off Ropinirole - again

Postby Rustsmith » Fri Dec 07, 2018 11:31 pm

I've been trying to get off Ropinirole for 4 years, also unsuccessfully. It seems to be the only thing that works. I am currently experiencing augmentation symptoms. I really think that doctors don't understand/know how to treat this disease.


Getting off of ropinirole requires finding a doctor who understands how to treat augmentation since many do not, including most neurologists. If you can travel to a Foundation Quality Care Center, they will be able to help you out since this is one of the requirements for them to get that title. You can also try the neurology department at the closest medical school/teaching hospital since they see more patients with difficult situations than other doctors. A third option is to start calling every neurologist in your area, ask to speak with the nurse and then ask 1) does the doctor have experience treating augmented RLS patients and 2) will the doctor prescribe opioids for chronic conditions. The answer to both should be an emphatic yes. As a last resort, if you PCP is willing to learn, copy some of the Foundation's material on augmentation and buy a copy of "Clinical Management of Restless Legs Syndrome", 2nd Ed by Lee, Buchfuhrer, et al. The book is available from Amazon for about $35. Mark critical passages in each and then share them with your PCP.

As for approaches for getting off of any dopamine agonist, there are two approaches. Some experts like to have a patient wean down to a lower dose (maybe 1mg of ropinirole) and then stop cold turkey. This causes the patient to get almost no sleep for about 4 days and the RLS goes crazy during that period. Many give up before they are finished, but the idea is to re-establish the patient's baseline condition before starting treatment again. Other doctors take the approach that the patient is going to require an opioid to manage RLS after stopping the dopamine, so they simply provide enough opioid to cover the dopamine withdrawal. This is a much easier approach for the patient, especially if the pre-augmentation RLS was severe.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

67java89
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Re: Attempting to get off Ropinirole - again

Postby 67java89 » Sat Dec 08, 2018 6:09 pm

Wow, looking at the map I am disappointed to see how FEW Foundation Quality Care Centers are in existence. I think my best bet at this point is my PCP since she seems open to new treatments. I am only on 1mg Ropinirole per day, so I could easily get off it. Problem is, then my RLS symptoms are unmanageable and I'm walking the floors all night.
Sleep is a basic need.

Rustsmith
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Re: Attempting to get off Ropinirole - again

Postby Rustsmith » Sat Dec 08, 2018 9:18 pm

looking at the map I am disappointed to see how FEW Foundation Quality Care Centers are in existence


Part of the problem is that there are so few doctors who are well enough versed in the treatment of RLS to become Quality Care Centers. The other issue is that there are doctors out there (mine is one), who are already so overwhelmed with patients that they don't want to apply for QCC status because that would simply bring in even more patients and this would degrade the care that they provide to their existing clients. The doctors at the teaching hospitals are doing what they can to spread the word by increasing the number of residents who are familiar with treating RLS, but unfortunately this is something that takes time and cannot be rushed.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Tue Dec 25, 2018 11:06 pm

I have had a visit with my GP regarding my poorly controlled RLS symptoms, they were never superbly controlled but are even less well controlled since I dropped the Tramadol ER 3 months ago. This was at the instigation of another doctor in the practice who doesn’t like Tramadol. Presently I take Ropinerole 5mg daily and Codeine Phosphate 150mg daily spread over the 24 hours.

When I first started taking Ropinerole about 13 years ago 4mg was the guided daily max dose. RLS experts now consider it should be more like 1mg daily. So I am well above any reasonable dosage.

My GP freely tells me that he is not well versed in the treatment of RLS and is working off UK NHS (National Health Service) guidelines and the papers I take with me to the surgery. He asked me what I really really wanted and I told him.....
1 Better control of my present symptoms.
2 I want to come off the Ropinerole because of Augmentation (he asked what was augmentation) and asked would he support me in this. “”What are you asking for, you obviously have something in mine “”says he. “” I am asking for proper opiate help to get off the Ropinerole and to deal with the nightmare that it will become””. GP told me he is limited in how much he can prescribe (excepting cancer patients) but when he worked out my present codeine dosage using a particular scale he reckoned I had quite a bit of leeway.
I used the Mayo Clinic ‘The Appropriate Use of Opioids in the Treatment of Refractory Restless Legs Syndrome’ for his information on Augmentation and getting off Ropinerole.

As Guidelines show Ropinerole as a daily max of 4mg he dropped my prescription of 5mg by 1mg so as to conform. So I am already down in that dosage. GP said he’d be in trouble to be further prescribing at 5mg. To start to make up for the Tramadol that had been removed a few months ago he has started me on Gabapentin 75mg x 2 daily for 4 weeks and then to increase the Gabapentin. He says he will work on increasing the Gabapentin. Then on to reducing the Ropinerole and working a balance with the codeine (or whatever).

There is no doubt that he is trying his best. Here in UK a GP appointment is 10 minutes and he spent almost an hour with me.

Interestingly, he mentioned that my last Ferritin test was 67. This was a surprise to me as my Ferritin, for many years, has always been up around 160. I wonder why it has dropped. I am now prescribed iron tablets.

GP suggested referring me to a Neuro Surgeon as it has been 11 years since I saw one. I reminded him that it had been a waste of time. Perhaps he feels that it is in his own interest to have me assessed by a Neurosurgeon. I agreed, without much enthusiasm on that one. It will be a couple of years before I’d be called for appointment, the waiting lists are appallingly long. GP admits that he doesn’t know of one who is familiar with RLS !!

However, my daughter in law who is a prescribing nurse in the main City Hospital works along with the Neurosurgeons and she is going to speak with them and see if they have any suggestions as to who might help. If there was a suitable Neurosurgeon I would pay privately to go see him which would hen only take about a week for an appointment (after locating a suitable person).

So, at present, I have reduced my Ropinerole by 1mg and am taking Gabapentin.
GP is aware of my fear of when we start to seriously reduce the Ropinerole and he appeared to be willing to do what he could to help. At the dosage I’ve been taking for so many years it will have to be weaned off.

Thank you for reading this, sorry it was so long.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

badnights
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Re: Attempting to get off Ropinirole - again

Postby badnights » Wed Dec 26, 2018 6:31 am

Oh Betty! I'm so happy you're brave enough to start this journey. I only wish you had the proper support. How I hope your DiL finds a neuro who knows something! How I hope your GP digs into this and learns as much as he can.

What is the next step, then? Do you have a follow-up appointment? I don't see that small dose of gabapentin doing much for you.... but you never know... Maybe you could get an iron infusion?? You qualify according to the consensus guidelines published in Sleep Medicine, assuming your other numbers are ok too.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

badnights
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Re: Attempting to get off Ropinirole - again

Postby badnights » Wed Dec 26, 2018 6:34 am

67java89 wrote:I am only on 1mg Ropinirole per day, so I could easily get off it. Problem is, then my RLS symptoms are unmanageable and I'm walking the floors all night.

Hi java
Becuase you mentioned that your symptoms are unmanageable when you try to get off ropinirole (and you've been thru this 4 times) I think I should review very briefly what augmentation and withdrawal are with respect to RLS/WED. Your baseline symptoms are probably much better than what you're experiencing now, and are definitely better than what you've felt when you tried to stop.

You've augmented, which means (you probably know this already) the medication doesn't last as long after you take a dose, and your symptoms start sooner the next day, are more intense, and may involve more body parts. In this way the medication that seems to be helping is actually making the symptoms worse. So your current symptoms are worse than they actually would be without the medication.

Then, the second whammy, when you stop, the symptoms temporarily get even worse. This is the period of withdrawal, and its length is different for each of us, but typically the worst of it is over in 5 days.

After that, your symptoms get better, dramatically so, until they reach your baseline level - the actual level of symptoms that is not enhanced, or augmented, by medication.

I think what you've experienced so far, when you tried to stop, is the doubly-heightened symptoms of withdrawal.That level of symptoms would not last. Five days seems like a lifetime when you can't sleep and are being tortured (which is why it is so much better to have an opioid to tide you over, though people have managed it without one), but that period ends. After the withdrawal is over, your symptoms return to their base level.

Anyway I just wanted to give you that perspective on your symptoms. There are undoubtedly medication options that will take care of your baseline symptoms. Your withdrawal symptoms, which is what you've felt every time you've tried to quit, are much much worse; and will fade with time.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
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Re: Attempting to get off Ropinirole - again

Postby ViewsAskew » Wed Dec 26, 2018 8:00 am

Betty! WOW!
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stjohnh
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Re: Attempting to get off Ropinirole - again

Postby stjohnh » Wed Dec 26, 2018 4:01 pm

Polar Bear wrote:...Interestingly, he mentioned that my last Ferritin test was 67. This was a surprise to me as my Ferritin, for many years, has always been up around 160. I wonder why it has dropped. I am now prescribed iron tablets.

...


Betty, Any chance you can get an IV Iron infusion? You are clearly a candidate per the IRLSSG consensus guidelines for iron treatment. Serum ferritin (except for very low levels less than 20) has almost no correlation with the likelihood of a good response. A ferritin of >100 does not mean you have enough brain iron and does not correlate with a good response to IV iron.
Blessings,
Holland

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Wed Dec 26, 2018 4:41 pm

The present gabapentin dose of 75mg x 2 is the starting dose. GP says it can go waaaay up.
I don't have a follow up GP appointment, I ring the medical practice and make an appointment, or ask for a call back telephone appt, to confirm how it's going and up the gabapentin.
If it is too difficult in the meantime I would ring sooner and ask to up the gabapentin.

I looked at the guidelines in your post Holland. You and Beth have both talked of the guidelines.
At our appointment my GP did mention that he must follow the UK NHS guidelines.
Under your guidelines in your post would I really qualify when my Ferritin is 67.
GP did give me iron pills - I honestly believe he would think my head was cut if I suggested an iron infusion.

Holland, at the risk of sounding stupid.......
Serum ferritin (except for very low levels less than 20) has almost no correlation with the likelihood of a good response. A ferritin of >100 does not mean you have enough brain iron and does not correlate with a good response to IV iron.
Will you explain this to me as though you were speaking to a 5 year old .......

Ann - Wow indeed. I am terrified. Really truly. I have known for a very long time that the day must come and have been too fearful.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

stjohnh
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Re: Attempting to get off Ropinirole - again

Postby stjohnh » Wed Dec 26, 2018 7:42 pm

Polar Bear wrote:...
Holland, at the risk of sounding stupid.......
[i]Serum ferritin (except for very low levels less than 20) has almost no correlation with the likelihood of a good response. A ferritin of >100 does not mean you have enough brain iron and does not correlate with a good response to IV iron.
Will you explain this to me as though you were speaking to a 5 year old .......
...


Iron is a critical requirement for nearly all living things. Plants need iron, and is stored using ferritin, similar to humans. Iron is used in MANY metabolic processes. The one patients and doctors are familiar with is the iron requirement for red blood cells to carry oxygen. There are parts of the brain that require iron to function, not related to oxygen carrying requirements. Many other body processes also require iron. The amount of iron to function properly is only well known for blood to carry oxygen. That is what the "normal" ferritin level reflects, the amount of iron needed for red blood cells to function properly.

Currently it is recommended that the ferritin for RLS patients be above 75 or 100. Those that have ferritins less than that MAY respond to oral iron, though most don't. Again, the blood ferritin tells us next to nothing about brain iron. The reason IV Iron is not recommended for those with ferritin above 300 is not that they have enough brain iron, it is because additional iron, if a person has a ferritin over 300, may cause iron overload (hemochromatosis). RLS is thought to be primarily a problem in which iron in the blood doesn't get properly into the brain. For unknown reasons, some but not all people, can increase their brain iron by IV iron infusions. There is currently no known way a doctor can safely determine if a living person has adequate brain iron, though researchers are trying to solve that problem. We know that people with RLS have low brain iron from studies done on RLS patients that have died and allowed their brains to be analyzed after death. Additionally there are animal models of RLS that confirm low brain iron is likely to be the culprit that leads to a series of abnormalities (excessive dopamine, abnormal adenosine metabolism, abnormal glutamate pathway metabolism) that cause the main RLS symptoms (urge to move and sleep abnormalities).

Different organs in the body have different iron requirements. Most doctors do not know that. The lab reports a "normal" ferritin level usually as a range, typically about 20-500. This indeed is a normal blood level, but it tells us nothing about the iron levels in the brain.

The IRLSSG consensus report on iron treatment has a nice summary of iron metabolism in people. Should be readable by most people that have had some post high school education.

https://www.sciencedirect.com/science/article/pii/S1389945717315599?via%3Dihub
Blessings,
Holland


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