New-Asked to post about treatments

[RestlessNan]

As I mentioned, I have had RLS since my teens, called "growing pains" at that time. They were episodic at that time, sometimes just happening once in awhile, several nights in a row and then nothing. With my second pregnancy in 1979 I was in my late 20's, I had it in my arms in my 2nd and 3rd trimesters and then they abated after delivery except for the off and on nature in my legs. Gradually, in the mid to late 90's, they worsened to a point that aspirin or acetaminophen weren't at all helpful. I finally saw a different Dr. He tried somethings for movement disorders like Sinemet, Dilantin and an opioid. The first two had side effects, the opioid was helpful. Being an RN, I felt some guilt about using the opioid and I used it sparingly. There was a definite increase in frequency after a time and finally I saw a neurologist around 2000. I started on Requip, on a very low dose following the protocol to get it to 1mg at bedtime and also one Percocet 5/325, to take every night. I felt reborn! This malady was finally under control!! But, given time, there was break through again. My family Dr. thought it was fine to increase the frequency of the Requip to twice a day and then 3 times a day. And to take the opioid on a prn basis. It was well controlled for several years until about 2016, when I had much more breakthrough in the late afternoon and during the night. Finally, the Requip was increased to 4mg, 3 times per day! I've been on this dose for several years and due to a dependency on the Percocet as well as some developing kidney failure and GERD, the NSAIDS were out. Now it's 2023. I have had 2 back surgeries, have fibromyalgia also for several years, and general chronic pain. I have sleep apnea and insomnia, I couldn't tolerate CPAP.. I didn't qualify for "Inspire" and the dental appliance is nearly intolerable. My sleep is interrupted by so many things. The RLS rears it's ugly head more often, esp. in the evenings if the Requip dose is missed or delayed. I've started sleeping during the day. I started on gabapentin 600mg 2x/day for generalized pain. I haven't worked for several years, depression is present; headaches are nearly daily; I'm unable to work. Recently, I started reading about RLS on line and found the RLS seminars on Youtube. The Augmentation is completely new to me, no one has ever mentioned that possibility. I'm going to have to find a neurologist quite soon and form a plan. So, that's my story and I'm sticking to it.!

[shinderlider]

Thanks for sharing your story.

12mg of Requip daily? Wow! I’m trying to slowly come off 4mg as I switch to gabapentin and it’s rough; can’t imagine coming off 12mg.

I found reading posts here to be helpful and comforting, just knowing there are other folks who understand what it’s like to struggle without being able to get restful sleep.

Hope to hear from you often.

[Rustsmith]

Take a look through our Augmentation section. You should also take a look at this publication on the proper use of opioids to treat RLS since it applies to people like you. https://www.mayoclinicproceedings.org/a ... X/fulltext This is also something that you may need to have when you see the neurologist.

Getting off of the ropinerole will be difficult (severe insomnia). Since you are starting from 12mg, you will need to taper slowly and it will definitely help to have a daily opioid to cover the withdrawal symptoms. As for opioid dependency, that is something that most of us have had to accept. Better that dependency than severe RLS and personally, I find opioid dependency much easier to accept than the dopamine agonist dependency that many doctors forced upon us without explaining the eventual ramifications of it.

[Yankiwi]

I can't imagine any doctor prescribing 12mg of ropinerole. He/she has a lot of learning to do.

[Polar Bear]

12mgs ropinerole for RLS is the highest/worst dose I have heard. Are you still with the same doctor who provided this prescription. Indeed, he has a great deal to learn about RLS.

[RestlessNan]

I'm back! Since I was last here I've learned lots more about RLS treatment and augmentation. I'm still trying to get an appointment with a neurologist who has a special interest in RLS, the referral is there, waiting to hear back for an appointment. Hopefully it won't be years out. I never gave much thought about the dosage of Requip that I'm on. I'm thinking that my provider at the time of going up to 4mg/ 3 times a day, was looking at the Parkinson's dosage. Being I didn't have any side effects from the Requip and it continued to work for the RLS, I never gave it much thought until recently. Also, I've seen different doctors for other problems who had looked at my med list, they never said anything about the dose. My concern has always been the continued use of an opioid and dependency upon it.

My more recent provider and I reviewed my medications last week to see what could be changed due to my sleepiness, extreme sleepiness during the day but continued insomnia during the night. He has been understanding about the opioid use and continues to write new prescriptions and a narcotics contract is in place. We lowered the dose of Requip in the morning from 4mg to 2mg. I didn't agree with that decrease but I said I'd try it. That was too much, the second day the symptoms started and neither the late afternoon or evening dose covered the breakthrough that I started having and it was almost impossible to get rid of them even with maximum dose of narcotics. I went back to the 4mg 3 times until further discussion is held on the topic of decreasing meds, I am back to my norm. We also decreased gabapentin a little and being the provigil wasn't doing it's job of keeping me awake. I was on Adderall for a long time but the insurance wouldn't cover it anymore. They were a little more helpful with the provigil I've been on. This is going to be a hard road. I don't find any local support. I'll be back. Thank you for your suggestions.

[Polar Bear]

I mentioned today in another Augmentation thread that I spent 10 months weaning off 5mg ropinerole daily by dropping .25mg every 2 or 3 weeks. With the support of Cocodamol 30/500 x 2 tablets x 4 times daily, plus pregabalin. It worked well for me.

[RestlessNan]

The more I read, the more fear I have about augmentation and weaning off of ropinerole. I am relieved to report that I have an early July appointment with a neurologist who deals with RLS and has a good reputation. The next 7 weeks can't go fast enough. I will continue to follow the boards and read as much as I can so I will be much more informed than I've been previously. I think that it's become such a way of life for me that I've become complacent. I've had many other health issues going on as well an my attention has been diverted. I had low back surgery 2 years ago and had a neurosurgeon do the surgery. I asked him about the RLS and if there were any new treatments and he really didn't have much to say, outside of his field? It's been a real merry-go-round in an anything but fun way.

[Polar Bear]

I wish you well at your July appointment. You are correct that you should be as well informed as possible especially with regard to weaning off the ropinerole.
You can then discuss with him whatever suggestions he may offer.

[RestlessNan]

I've finally found my way back to this RLS discussion. Life has been very busy and it's been a hot, difficult summer in central MN. I have had some new goals to meet before my first appointment with the neurologist this week. I've worked with my provider to decrease some of the meds I've accummulated and have been quite successful in doing so, EXCEPT for the high dose of ropinerole I've been on (total of 12mg daily, I know, I know, it's absolutely obscene). I cut down and cut out several meds, but when I tried to decrease the ropinerole, from 4mg to 2mg for the middle dose of the day, the pain got so out of control, it took several regular sized and on time doses to get back to a tolerable level, plus percocet and a muscle relaxant. This just scares the heck out of me as my provider for most of my medical needs was really surprised that the reaction was that profound. I have asked other MDs, PA's and NPs in the same practise, what their observations are regarding the dopamine agonists and RLS. They seem like I'm making this up. There really is a lack of knowledge among these non-specialists, although the one is involved in sleep medicine, she was instrumental in the dose level the ropinerole is at presently. There seems to be a general agreement about making sure that iron levels are adequate. With the general climate regarding opioids being so tenuous, I didn't even mention that I thought I'd have to go on a continuous drip of a narcotic to get off of the requip. I'm starting to think I may have to find me some Fentanyl or propufal (sp?, the Michael Jackson one), I don't mean to sound flippant especially when in fact, I'm scared. So the appointment is in 3 days with the neurologist.......I'm trusting that "augmentation" is a regular word in his vocabulary. I think I'll cry if I get another blank look.....

[Rustsmith]

Since you are definitely augmented, getting down from that much ropinerole is going to be very difficult. Your RLS is going to be worse than ever and the insomnia will be non-stop near the end. That is, unless you can convince a doctor to prescribe an opioid. Hopefully, the neurologist next week will be familiar with augmentation and the need for opioids. You might want to have a copy of this document as a backup, just in case. https://www.mayoclinicproceedings.org/a ... X/fulltext

If the doctor next week give you a blank stare when you mention augmentation. First ask if the doctor is willing to work with you and allow you to educate him/her. If not, then you need to get on the phone when you get home and find one that will. Many of us have had to resort to traveling to one of the Foundation Quality Care Centers, where opioid prescriptions for augmentation were one of the requirements to get that designation. The only problem is that they are in such great demand that getting a new patient appointment can require a very long wait.

[RestlessNan]

I went to the appointment with the neurologist about 10 days ago and I was blessed with a knowledgeable , skilled practitioner. He was well prepared for my appointment having reviewed the info I submitted beforehand..There were some pieces missing regarding some prior studies and I felt he trusted me with providing it myself. He presented the plan to wean off the requip with the use of MS contin and addition of neurontin.He gave me a schedule to wean on a weekly basis. He also checked my iron levels and there was a low area, so a replacement with Vit C was ordered. Only snag was insurance, they wanted more documentation for the MS contin. I'm waiting on that. I've done what I can on my end. I believe I'm in the right place. Thank you.

[Polar Bear]

I'm delighted to hear that you had such a positive appointment with your neurologist and that you now have a plan with the support of ms contin and neurontin. Please do keep us informed about how you get on.

[IndyRPh]

Hello,
I had a similar distressing appointment with a new neurologist today-not the blank stare but more of a dismissive attitude. I have augmented on Mirapex 0.5mg daily and her answer is to switch to Requip XL 4mg daily with a possible increase and addition of Sinemet!
I tried showing her the Mayo Clinic guidelines and other documentation from the RlS foundation but she kept interrupting me and also said that the RlS foundation information is “outdated”. She agreed to have a serum ferritin level drawn (no results yet) even though she said my previous level of 64 was “fine”.
I’m 66 years old, have dealt with RLS for about 20 years but now I have it 24/7 and in my arms as well.
I should have gone to a Quality Care Center but the nearest one is over 2 hours away-how do you sit in the car that long?

[Polar Bear]

Your new neurologist is wrong. To suggest a switch to Requip XL 4mg with a possible increase and the addition of Sinemet shows her lack of understanding in the treatment of augmentation.
You also know that you really need your ferritin serum to be up at 100.
Being augmented on Mirapex you need to wean off it and consider a different medication/s. Support of a low dose opioid to wean off and also possible gabapentin/pregabalin.

I weaned off Requip 5mg and am better controlled with Cocodamol 30/500 x2. 4 times daily. Plus pregabalin 400mg twice daily. As prescribed by my Movement Disorder Consultant.
As for sitting in a car for a 2 hour journey. Split the journey with a comfort break and a 15 minute walk.
My current medications would allow me to do the 2 hour journey.