Upcoming Appointment

[Wys801]

Hello, fellow RLS'ers,

This is actually my first post; I've been a member of our community for 3 1/2, and years have learned a lot in that time.

I'm a 60yo male who lives in the US; I've had RLS for 20+ years but really didn't get to the point of needing medication until about 15 years ago, although I recall having it back in my teenage years, but nothing significant.

I was prescribed Ropinirole about 15 years ago and started on a very low dose, which I believe was only .25mg. That worked well for a couple of years, then I recall one night, the dosage didn't work, I called my Dr. and he, of course, upped the dosage. Slowly over the next couple of years, I worked my way up to 5mg at night; at this time, my RLS had not crept into my daytime work and activities.

Several years ago, I started reading about the side effects of Ropinirole, including augmentation. I weaned myself down to 3mg a day... well, most days anyway, but my augmentation is terrible!! Some days it can start early in the morning, but most days, it begins around 3 or 4pm.

I have tried CBD, which for me did nothing. I have successfully used cannabis; I'm fortunate to live in a state that both medical and recreational are allowed and have also found success, to a lesser degree, with Kratom. Still, at night neither of these work, and I need my prescription.

Thank you for allowing me to make a lengthy introduction, now to the point at hand. I have an upcoming first-time visit with a neurologist. He was a healthcare provider on the RLS.org website; other than that, I don't have much information on him and what his RLS philosophies and treatmentments entail. I'm hoping that I don't wind up having to educate him; I am hoping that with knowledge from this group, I can go in there prepared to offer suggestions or even possibly educate him if need be.

What are some suggestions that you feel are important to talk about for my first appointment?

I am grateful to belong to a group willing to offer their support, knowledge, and expertise.

TIA,

Dave

[Hidden]

Hi Dave, if as you appear to be saying you're still taking ropinirole and still have augmentation then the main thing you need to do is get off the ropinirole.

If the neurologist you're seeing is knowledgeable about RLS, then I pretty sure they'll say that.

You can't just stop taking it, that's dangerous. You have to wean off it slowly. If the neurologist is good, I'm sure he'll discuss that too.

He may advise on other things you can take to help you wean off the ropinirole.

He may suggest a replacement for the ropinirole. I can't guess what he'll suggest, possibly a "gabapentinoid". Hopefully not pramipexole or rotigotine.

If so, you may have to trial this. After suffering augmentation, the gabapentinoids may not be successful.

Another option would be an opioid.

If the neurologist is aware of the latest recommendations for the management of RLS published by the Mayo clinic in July, he will also discuss iron therapy with you.

He should also discuss excerbating factors with you.

If the consultation goes nothing like this, then I suggest you come back to this forum for further information.

Let us know.

[Wys801 in reply to Hidden]

Thank You, Manerva. Yes I’m still on 3mg ropinirole and I really want to get off that, and yes I have heard horror stories of people trying to get off that.I am really hoping this neurologist is well versed in the latest publication, which I have read. I understand that we are responsible for our own health, but I don’t want to go in guns a blazing telling him whats what, but I do feel as though I know enough to say I don’t want to do a particular course of treatment.

I will definitely up this thread after my appointment.

I do want to thank you and numerous other group members for providing so much valuable information!

Dave

[SueJohnson]

If he is a healthcare provider on the RLS.org website, I would imagine he would be knowledgeable about RLS or he wouldn't be on that site, Good luck.

[Wys801 in reply to SueJohnson]

I certainly hope so.

[Bellamcc]

I am on ropinirole and have been for for 5 years, dosage is .25mg 4 at night. The way I take them is 2 in the afternoon and 2 at night with amitriptyline which helps me .

[Ciduoc]

You need to get off Ropineral. I found the withdrawal effects were not so bad because I took both Gabapentin and Ropineral until my dosage of the former was adequate. I don't suggest just going off Ropinerole without having another prescription at its proper dosage.

[Todge]

I echo the sentiments of the others.. If this doc doesn't seem up to date on the latest info on RLS, keep looking!! I see a great doc in MN. I needed the help of Tramadol and Oxycodone to help with the hell that is weaning off then withdrawing from my DA (4-6 mg Ropinirole.) My doc was super nice but DIDN'T prepare me enough for the weaning process (probably wanting to keep me positive when I was already scared to death at how quickly my symptoms had progressed.) I am a nurse so of course I was naively against going to an Opioid, but I am so glad I had educated myself here prior to my last appointment and was able to communicate that I believed I would need something to aid me during this time. I can't imagine having to go through this process without them. So my point is to give you kudos for teaching yourself about what treatments you may need, keep advocating for yourself, and keep reading these posts cause these folks here are impressive and have really saved my life this last month. If I had only gone on what the Doc had said at first I really don't think I would have survived. I would have thought I was going crazy or dying for sure. So keep up the good work. I am wishing you all the best, keep checking back!!

[Wys801 in reply to Todge]

Todge,

Thank you for your words of encouragement. How long did it take to wean yourself off of your DA and what are you currently taking?

[Todge in reply to Wys801]

I was given 6 weeks of FMLA starting August 1 and I have to be back to work 9/13 so I had to wean off faster than I should have. I dropped immediately from 6mg back to 4mg then decreased by .5 every three days. Some people dropped so gradually and had the help of opioids or alpha 2 deltas and didn't have the withdrawal hell that I inflicted upon myself. My doc first hoped cannabis would be all that I needed. It didn't even touch my augmentation and withdrawal symptoms. I messaged him joking around but being serious that I was quickly losing it. He responded with what you are going through is "no joke!" He immediately called in a script for Tramadol. That happened a few when I had gotten as low as 1.5 mg. I needed more and more Tramadol but still didn't even come close to what he had prescribed. I noticed that my daytime symptoms were almost gone when I was dropping from 1mg to .5 mg. When I finally stopped the DA altogether, like most folks I didn't sleep at all the first 2 days. I was expecting that. On day 4 after completely stopping Ropinirole, I started having intense anxiety and panic attacks. I messaged the doc again and he even called me back and started me on Oxycodone 5mg IR. That at least kind of knocked me out for 4 hr a night. I am still having low levels of anxiety and haven't had an attack in 2 days. I was actually feeling like I want to see if I can stop the Oxy as I am now constipated. BUT having been so close to admitting myself in a psych ward a few days back, I will handle the constipation.

I hope this helps you. Sadly it won't be easy but heck if I am making it through this hell, I don't even know you but I can assure you that you can do it too!! Just remember that everyone is different, but it did help me to see that people shared their experiences and that I wasn't alone.

[involuntarydancer]

Hopefully your neurologist will test your serum ferritin and recommend an iv iron transfusion if it is below 100. Raising your serum ferritin should ideally be done prior to withdrawing from ropinerole as it may help reduce the rigours of the withdrawal process. I would second the suggestions above that an opioid will be necessary to help you get through the withdrawal. Although it is possible to withdraw without an opioid, it is very difficult.

[Doctorplacebo]

Dave, my one recommendation would be to be prepared to push for aggressive iron therapy, intravenous if necessary, to get your ferritin well above 100. Bring appropriate materials from the Mayo Clinic Proceedings updated management of RLS article, or other scientific articles you may find supporting this. Make sure he knows that ferritin in the "normal" range for non-RLS patients is not normal for us.

Good luck.

[DebbiDoo1958]

NON ADDICTIVE treatments only...hopefully, NO opioids...imo