New member with a few questions

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Perry01
Posts: 9
Joined: Tue Jan 07, 2020 8:59 pm

New member with a few questions

Post by Perry01 »

Hello, my name is Perry and I was diagnosed with RLS 10 years ago. I first noticed the symptoms after recovering from shoulder surgery. When I stopped taking Percocet for the pain, RLS symptoms began. I made an appointment to see a neurologist and after checking my ferritin levels, she prescribed me 4 mg of Requip daily. This worked for about five years then symptoms got worse requiring a higher dose. My doctor increased the dose to 8 mg but never discussed augmentation with me. I recently retired and move to another state. My new GP suggested that I visit their sleep center for a consult.

The doctor at the sleep center appears very knowledgeable regarding RLS and informed me of augmentation to a DA and suggested I come back for an overnight sleep study. He ordered a blood test to check my ferritin level and also suggested that I start taking Gabapentin.

I have no pain in the legs just a desire to move at bedtime. I currently take 8 mg of Requip two hours prior to bedtime and If I am interrupted as I am falling asleep, I’ll get hot flashes and have difficulty falling asleep. I’d really like to get off of the Requip and the sleep specialist warned me of the withdrawals. He also told me to come to this website for info and support.

How does gabapentin compare to Requip? I’ve read about IV iron therapy on this discussion board and I’m wondering whether I should inquire about it with my Dr. Any advice would be appreciated.

Rustsmith
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Re: New member with a few questions

Post by Rustsmith »

Your new doctor seems very knowledgeable, which is unusually and quite fortunate for you.

For iron IV therapy, you will need to wait until you get the results of your recent blood tests to know more about how to proceed. You need to know the actual ferritin number.

As for gabapentin, it is the first drug that you should have tried rather than Requip. I works well for about 65% of us. For the rest of us, it only helps address the insomnia side of RLS. Unfortunately, it is not strong enough to cover the Requip withdrawal symptoms that you will experience. Only the short term use of an opioid will help with that. Since your sleep doctor warned you of withdrawal symptoms, it sounds like he/she is going to take the route of having you get off of the Requip without the use of an opioid. In that case at at 8mg/day, you will probably be instructed to gradually reduce the dose down to about 1mg/day before your finally stop. You will experience very poor sleep during the entire time and no sleep for a couple of days when you finally stop. Many describe it as the most difficult thing that they have ever done, but feel much better afterwards and much better for the experience.

So, let us know more once you find out about your ferritin.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.

Perry01
Posts: 9
Joined: Tue Jan 07, 2020 8:59 pm

Re: New member with a few questions

Post by Perry01 »

Thanks for the reply Steve,

I will report back after I get the results of the ferritin test. Another thought, I am going to have rotator cuff surgery in March and I’m wondering whether that would be a good time to wean myself off of the Requip. I will be prescribed opioids for pain so i should be able to stop taking the Requip without any withdrawal symptoms then.

Thoughts?

ViewsAskew
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Re: New member with a few questions

Post by ViewsAskew »

What an AWESOME doctor so far!!!

I think if I were you, I'd want to read about the people who have stopped a DA and if they did it fast or slow, with an opioid or not, and what the issues and benefits are. I wish we had an index here, alas not.
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.

Polar Bear
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Location: United Kingdom

Re: New member with a few questions

Post by Polar Bear »

If I understand correctly you were taking 4mg Requip for about 5 years and have now been taking 8mg Requip for a further 5 years, as one single dose daily. 8mg is a very large dose.

I weaned myself off 5mg Requip (which was taken in several doses over a 24 hour period) doing it extremely slowly (over months) with the support of max dose Codeine and 200mg x 2 Lyrica. It was not as difficult as I feared, and I was very afraid, but would have done it sooner if I'd known. Others have done it much faster and coped with a more difficult journey in order to get off it quicker.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Perry01
Posts: 9
Joined: Tue Jan 07, 2020 8:59 pm

Re: New member with a few questions

Post by Perry01 »

Polar Bear wrote:If I understand correctly you were taking 4mg Requip for about 5 years and have now been taking 8mg Requip for a further 5 years, as one single dose daily. 8mg is a very large dose.

I weaned myself off 5mg Requip (which was taken in several doses over a 24 hour period) doing it extremely slowly (over months) with the support of max dose Codeine and 200mg x 2 Lyrica. It was not as difficult as I feared, and I was very afraid, but would have done it sooner if I'd known. Others have done it much faster and coped with a more difficult journey in order to get off it quicker.
Yes, you got it correct. 4 mg dose for the first five years then increased to 8 mg over the last five years. I’m not looking forward to weaning myself off the Requip. Yesterday’s doctor visit was an initial consult and I will have many more questions for him on my next visit. I will call his office tomorrow to inquire as to my ferritin levels.

badnights
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Re: New member with a few questions

Post by badnights »

Not sure about stopping after surgery. First, it will take a while to taper down – you shouldn’t stop cold turkey from such a high dose. Even if you started now, you would have to do it very aggressively to be ready for the final step by March, and as of now you have no plan in place for replacement medication. Gabapentin will not touch it, I suspect, but would be better than nothing. Horizant would be better than gabapentin, it turns into gabapentin in the body which bypasses the problems gabapentin has with erratic absorption. Or Lyrica/pregabalin, which is cheaper than Horizant, and similar. But more expensive than gabapentin. (Caveat: you might respond poorly to any one of those, in which case it would not be good for you even if I just said it was good).

Second, I'm not sure if what they give you for pain will be enough to handle the withdrawals – maybe, maybe not – but if not, you’re stuck without enough and you'll have pain and WED/RLS at the same time. Might be ugly. Still, it's not a bad idea, and you should discuss it with your doctor when you devise your ropinirole-cessation plan.

Ask for all your iron numbers when you call - - oops you probably called already. Well anyway the transferrin saturation (or iron saturation index) is also important for knowing if you can get an infusion. If you want to direct your doctor to a paper that represents expert consensus on use of iron to treat WED/RLS, click the link in my signature line. It's the first item on the list that opens up. Many of us have printed that out for our doctors.

When do you see your doctor again? You need to make a plan with him/her for how to get off the ropinirole. You should ask what to expect at each step, what medication(s) you should be used to control the symptoms (which will be worse as you withdraw), and how to get in to see him quickly or talk to him when things go sideways - when you're at the end of your rope and can't take another single minute, and your brain is fried from lack of sleep so you can't think straight anymore. He needs to be available to help you in that sort of situation, which hopefully will never arise.

A lot of doctors think they know what it's like, from treating many patients, but it turns out they have never actually seen a WED/RLS patient in augmented dopamine agonist withdrawal, and it shocks them to their bones when they actually see it.

Another thing that might help as you withdraw is kratom (a herb with opioid properties that is legal in many states - you can search on this board to read about it).
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.

Perry01
Posts: 9
Joined: Tue Jan 07, 2020 8:59 pm

Re: New member with a few questions

Post by Perry01 »

An update. The Dr’s. office called and told me that my ferritin was 93 and within normal range. Before I could get a follow up with the Dr. a sleep study was required. I completed the sleep study and the preliminary report found that in addition to RLS I have mild/moderate sleep apnea......

I have a follow up scheduled for next month and was wondering what kind of questions I should have for the Dr. regarding treatment of my RLS. I know that I want to get off the Ropinirole. 8 mg. daily is twice the max dose. I suspect he will have a plan for weaning me off the Requip and starting me on a new medication.

I also want to bring up the possibility iron IV therapy.

Anything else?

Rustsmith
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Location: Colorado Springs, Colorado

Re: New member with a few questions

Post by Rustsmith »

Unfortunately, you cannot count on your sleep doctor knowing about augmentation and how to help you get off of ropinerole. Far too many doctors who should know how to help RLS patients who have augmented on dopamine agonists haven't a clue about what is involved, not to mention being clueless about augmentation in general. Also don't expect that your doctor will be familiar with the use of iron IVs as a treatment for RLS since this is one of the most recent developments and finding a doctor to perform one can still be a challenge that is even more difficult that getting opioids for RLS.

To prepare for your appointment, take a look through the posts in our Augmentation forum and select one or two of the medical journal papers that have links in one of the posts. You might also do a search on augmentation from Johns Hopkins to find something that you can share. The two most important points are 1) you cannot simply stop cold turkey at the dose you are taking without risking permanent damage of something called DAWS (dopamine agonist withdrawal syndrome) so you will need to decrease your dose before stopping and that will result in nights of poor sleep and bad RLS. And 2) there are only two ways to stop. The first is cold turkey from a low dose and this will mean zero sleep for 4 or 5 days and non-stop RLS followed by gradually increasing amounts over the next month until you reach your current RLS baseline. The second requires the use of an opioid to cover the withdrawal period followed by a few days of reducing the opioid dose. This avoid the many nights without sleep, but can be a hard sell with doctors these days.

The other thing to expect is for your doctor to insist that you try gabapentin, Horizant or Lyrica once you are off of ropinerole. These meds do not work for everyone, but you have to try them to find out if they work. They are not strong enough to treat you while you are in ropinerole withdrawal, but may work once you are off of it. The only other meds that are effective are opioids, which many of us have to take. They are used as a "last resort", but work well and many patients use them for years with not problems.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.

RLSlou
Posts: 3
Joined: Tue Feb 04, 2020 12:14 am

Re: New member with a few questions

Post by RLSlou »

I am a new member & I don't know where to post something. I have a username & password but can't see where to do it???

stjohnh
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Location: Palo Alto, California

Re: New member with a few questions

Post by stjohnh »

Hi RLSlou, and welcome.
At the top left of this page you will see "Quick Links" and below that "Main Discussion Board." Click on Main Discussion Board to get an overview of topics. Pick one of the topics and it will show the titles of the posts in that section. If you want to start a new topic (which is fine if you are unsure where it should go), at the bottom left of any to the page is a "New Topic" button. click that to start a new topic. Or you can just post your questions right here, someone will help you. Moderators are very understanding of new members and the problems of picking the right section.
Blessings,
Holland

Perry01
Posts: 9
Joined: Tue Jan 07, 2020 8:59 pm

Re: New member with a few questions

Post by Perry01 »

An update. Due to the current Covid-19 outbreak, I flew back to Hawaii for the near future to be with family. The downside is a poorer quality of health care in the Islands.

I made an appointment with my PCP to discuss augmentation to ropinirole. I was told he was seeing patients via video conference only. This is fine with me. My video conference call came this morning and it turns out the video conference was with his PA or NP, I’m not sure which. She was not very informed about augmentation in general and augmentation to ropinirole specifically.

Since my current dose is 8 mg daily, (two 4mg ER tablets two hours before bedtime) the new prescription says to take seven 1 mg tablets for three days, then six tablets for three days, then five tablets for three days etc. until I’m down to one 1 mg tablet. In other words, I’m expected to wean myself off the requip in 21 days. I was also prescribed a low-dose opioid in the event it’s needed.

During the video conference, I mentioned switching to gabapentin to treat my RLS. She said that should not be a problem but a prescription was not included with the 1 mg ropinirole tablets.

I guess my main concern is the length of the taper. I imagined it would have taken longer than 21 days to wean myself off of the ropinirole. Does anyone have any experience with this? Also, at what point should gabapentin be introduced?

Polar Bear
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Re: New member with a few questions

Post by Polar Bear »

I weaned myself of Ropinerole 5mg using Codeine and Pregabalin (which is similar to Gabapentin). As I reduce the ropinerole I started taking the Pregabalin at a low dose. As the ropinerole reduced further I increased the Pregabalin and followed this pattern, the lower the ropinerole the higher the pregabalin. I was already taking Codeine and it increased slightly as I got lower. I am now off ropinerole completely and my symptoms are controlled by the Codeine and pregabaline. Just occasional rls symptoms breakthrough.
Coming off ropinerole was the best thing I ever did.
However... I took a long time over my taper, approximately 10 months and managed to wean off without any great difficulty.

8mg is a very high dose and I would not like to be coming off it in 21 days.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Perry01
Posts: 9
Joined: Tue Jan 07, 2020 8:59 pm

Re: New member with a few questions

Post by Perry01 »

I’m not sure if the gabapentin will be strong enough by itself. From what I’ve been reading, gabapentin is usually prescribed with another medication to treat RLS. It’s too bad that most GPs are not familiar with RLS and augmentation to DA’s. I’m just trying to come up with a treatment plan once I’m off the ropinirole.

badnights
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Joined: Tue Mar 10, 2009 4:20 pm
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Re: New member with a few questions

Post by badnights »

I’m not sure if the gabapentin will be strong enough by itself. From what I’ve been reading, gabapentin is usually prescribed with another medication to treat RLS. It’s too bad that most GPs are not familiar with RLS and augmentation to DA’s. I’m just trying to come up with a treatment plan once I’m off the ropinirole.


If this was before Betty (polar bear) came off ropinirole, I'd have been 100% on board with you that gabapentin by itself would not be enough. I'm still pretty sure it won't be, but less sure than before. Betty's using pregabalin which is more predictable (therefore perhaps more effective) than gabapentin, and she has a bit of codeine to supplement it. You're planning a much faster taper from a higher dose...

Can you switch to Horizant instead of gabapentin? And get some kratom before you get too far down this path? When you speak to the doctor (or the nurse again) - and you need to, to discuss the taper - tell him/her what you know about withdrawing (that it causes increased intensity and duration of symptoms in more body parts; symptoms will be 24 hr/day for a few days) and what it's like to have the symptoms (symptoms are distressing like torture is, and while they're happening they prevent sleep, and no sleeping pill can overcome them); that it is unlikely you will be able to perform this taper without pharmaceutical assistance, what assistance is available?

Your research has told you gabapentin is not as effective as Horizant so could you have that instead.

I'm sorry, I am having a wave of tiredness. I would like to make this post coherent before I leave but I can't, I'm fading too fast. I am sure others will pick up where I left off or give you different thoughts to use ....
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.

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