Getting off of Requip due to augmentation

[Ladyslider]

I'm new here. In a nutshell I've have RLS since I was in my 20's and I'm 58 now. Took Mirapex for 6 years. When I maxed out on it my dr started me on Requip. I maxed it out at 6 mg plus my symptoms were starting earlier in the day and more severe. I found out by searching the internet I was in augmentation. Like most of the posts I've read on here my dr. knew nothing about it and referred me to a neurologist. She is the one that increased my Requip to 6 mg. Of course my symptoms became intolerable! I brought her copies of information from this website on augmentation. So I'm teaching my neurologist about augmentation and how to treat it. I bought the book "The Clinical Management of Restless Leg Syndrome" 2nd edition. This has become my 2nd Bible! I shared it with my neurologist too. We watched a webinar together from this site on opioids for augmentation. I'm on my 3rd night Requip free. She has me on Oxycontin 10mg once a day (I'm taking it every 12 hrs right now or else I'm sooo miserable) along with Lyrica 450mg total a day. This combination is working well for now. I feel drugged but it's better than the jerking from the augmentation. I don't know how long my neurologist can continue treating me with opioids due to all the strict guidelines out now on narcotics. She mentioned this. She could not give me Methadone but the Oxycontin is working great. Hopefully once I'm withdrawn from the Requip she can continue to treat me with a low dose opiate. I refuse to ever go back on a dopamine agonist! I'm in North Carolina and there are no RLS clinics or specialists that I've been able to locate.
I'm looking forward to being a part of this wonderful website and forum
'

[ViewsAskew]

I love your doctor!!!!! What I wouldn't give to see stories such as yours more frequently - not the bad part about the neuro giving you too much of the dopamine agonists, of course

And, you! What a great job you have done taking care of yourself. So impressed with what you have done.

[Polar Bear]

This is a fine example of how knowledge is power and having the determination to take your information to your doctor and say - This will guide us.

It's also to your doctor's credit that she is willing to learn and is willing to take the time to watch a webinair.
Have no doubt that eventually your education of your doctor will be helping other sufferers with RLS.

[Ladyslider]

Thanks. Due to my research on this forum and rls website I've been able to educate myself and my neurologist. I just thank God she is receptive to learning and listening to my input. So far my dopamine agonist withdrawal hasn't been too bad with the Oxycontin and Lyrica

[ViewsAskew]

Thanks. Due to my research on this forum and rls website I've been able to educate myself and my neurologist. I just thank God she is receptive to learning and listening to my input. So far my dopamine agonist withdrawal hasn't been too bad with the Oxycontin and Lyrica

That is such a great thing - those of us who have been through it know just how horrible is can be.

[stjohnh]

Don't completely rule out using a low dose of a dopamine Agonist in the future. A number of folks here have found they are able to get by with lower dose opioid along with low-dose dopamine Agonist, reducing the dose of opioid and opiate side effects in the process.

[Ladyslider]

I will keep this in mind. I guess right now it seems scary to think about taking a DA again but in the future I can see where this would be a feasible thing to do to keep the rls under control. I feel the best I've felt in a very long time with the 10mg of Oxycontin every 12 hours and Lyrica 150 mg 3 times a day. No rls at all! However this is just for a couple of weeks or so until I'm through the dopamine agonist withdrawal. Hopefully this won't take long. I don't know how much longer my neurologist will keep writing for the Oxycontin with all the opioid regulations emerging right now. I would like to get off of the Lyrica and just take a low dose of Oxycontin in the evening. We will see how things work out.

[badnights]

Have you had your ferritin levels checked? Taking oral or IV iron to raise your ferritin above 100 ng/ml can reduce the severity of your symptoms - and therefore the dose of medication needed to control them. (never mind the units - above 100 is what you need to know.) Also, if you ever do go back on a DA, you'll want your ferritin high (over 100) because that will reduce the risk of augmentation.

I agree with Holland it's an option to return to a DA in future, horrifying as it might sound right now, but at a much lower dose, and preferably in combination with another class of medication - that way you keep both doses lower than otherwise.

Your very open-minded doctor (who listens to webinars with you!!) must realize that the new legislation is not intended to deny people who need the medication. I suspect she's not looking forward to trying to justify prescribing opioids for WED/RLS in the absence of FDA approval for that use, in the event that someone decides to investigate her actions. But gee. It IS a legitimate use!

[Ladyslider]

My ferritin level was 185. I've always run a high hemoglobin and hematocrit too. One dr checked me for polycythemia and said he didn't think I had it based on other labs. I started taking 365 mg of iron 3X week a month ago to see if it would help with my symptoms. I'm due more blood work in Nov so will have all of this rechecked to make sure I'm not getting too much iron.

I'm blessed to have a neurologist who is willing to hear and learn from me and this website. She admitted she wasn't familiar with augmentation and was learning about it herself. I'm her first pt with augmentation.

She did mention it might be a problem justifying the Oxycontin for RLS/WED. We'll see how long it lasts.

Thanks for all the advice and information. It's great not to feel alone in all of this augmentation and RLS stuff.

[Polar Bear]

Ladyslider - If you use the link in badnights signature to go to the Augmentation information there should be documents within that would support the need of opiods for treatment of RLS Augmentation and be useful for your doctor 's justification.
(Very sorry I don't have time to look at the documents myself.)

[Rustsmith]

Ladyslider, if you are a member of the Foundation, their latest magazine "Nightwalkers" has an excellent article titled "RLS Patients Must Continue to Have Access to Opioids". It would be an excellent thing to share with your doctor if her concerns are limited to issues of causing addiction. However, she may also be feeling pressure from others (clinic management, insurance, partners, fear of losing her DEA license, etc) as the reason for her concern about long term use of oxycontin. If her concerns turn out to be an issue, perhaps she could help you find a different doctor who would be willing to provide you with the access that you probably are going to need.

[Ladyslider]

Thanks Polar Bear, I will check out Bad Night's signature line.

I just joined the Foundation and received my copy of Night Walkers this week! Thanks Rustsmith for pointing this article out to me. I will definitely take it with me to my next dr appointment at the end of this month. It's great having good, reliable resources to pull from.

[sleepdancer2]

I do hope your doctor stepped you down to a low dose before taking you off the med. At any rate, it's refreshing to hear of your doctor being open to learning. I may be an outlier, but once the augmentation and withdrawal period was over, I've been able to control my legs with a TENS Unit. Good luck with things.

[Ladyslider]

Sleepdancer2, How long did it take for you to get thru the withdrawal and augmentation? My dr. decreased my dose of Requip to 1mg from 3mg (at one point I was on 6mg!!) I'm hoping I get thru the augmentation while my dr is still willing and able to write for the Oxycontin. I've been off Requip for 8 nights now!

[ViewsAskew]

Sleepdancer2, How long did it take for you to get thru the withdrawal and augmentation? My dr. decreased my dose of Requip to 1mg from 3mg (at one point I was on 6mg!!) I'm hoping I get thru the augmentation while my dr is still willing and able to write for the Oxycontin. I've been off Requip for 8 nights now!

You will likely hear from several of us. For me, the worst was 15-20 days, but it continued to improve even more over many months, if not years. I had 24/7 symptoms and no sleep at all when I first took an opioid. The opioid controlled it, thankfully. Over time, that decreased to 18 of 24. I have had iron infusions since - that has reduced it a bit more. Now I would guess I am just a normal RLSer who has severe symptoms not off the chart ones.