Just joined and seeking advice

[rlm]

Hello all,
I'm glad to have found this site; it's hard to find good, current information and people who understand what having RLS is like.

I'm a 63 year old woman who lives in Minnesota and I've had RLS since the late 90s. As many of you know, it was hard finding a doctor that knew anything about it but I finally went to a neurologist who prescribed Mirapex for me in 2003. Unfortunately, over the years my symptoms have gotten worse and have started earlier in the day and I was taking more and more Mirapex. I maxed out a 4 x .125 spread out between 4:00 p.m. until bedtime, still having symptoms. This year I decided to do some research and became convinced that my problem was augmentation and went to my doctor armed with information and printouts I got from this website. I think she was doubtful about augmentation but was open to me sharing my information with her. I had my ferritin levels checked and I'm over 100.

Her approach was to have me wean off Mirapex while starting Lyrica. I had already started weaning myself off the Mirapex before I started the Lyrica but I couldn't seem to get past still taking 1.5 tabs with the Lyrica. Then I stopped the Mirapex entirely and interestingly, my symptoms started later and later in the day/evening which to me is validation that augmentation had been happening. Some nights were good but more were terrible--pacing the floor until 4:30 a.m., etc. I was taking four 25 mg Lyrica and the next day, I felt almost drunk. It wasn't working and I was feeling terrible and missing work.

So I showed my neurologist the recommended treatment for augmentation and she has given me a prescription for oxycodone even though she thinks I should just keep taking the Lyrica. The plan currently is for me to stay on the oxycodone and then switch over to Lyrica. I've been off both Mirapex (again) and Lyrica for three days and taking one 5 mg oxy before bed. It seemed to work fairly well with some symptoms in the early morning. I feel groggy the next day. Is this the typical dose and does the grogginess go away after awhile?

I've read that it might take 1-2 months of taking the oxycodone to get over the effects of Mirapex. How do you know when and if you can quit the oxycodone? One of my concerns is becoming addicted to the oxycodone, plus I don't like the drugged feeling I'm getting from it. I'm still working so I'm also concerned about being too groggy to function well at work on either the Lyrica or the oxy.

I feel like I'm making some progress but it seems like it's still a long road before this settles out. I'd appreciate any insight and advice. This is also my first ever online discussion group that I've participated in so bear with me.

Thank you

[Polar Bear]

rlm - Welcome to the discussion board. This also was my first ever on-line participation when I joined several years ago.

Well done on getting to day 3 without your Mirapex or Lyrica, it sounds like the oxycodone is helping the transition and it is very possible that after a week or so the grogginess will fade.
I understand that the max dose for oxycodone is 10mg (up to 3 times daily only if necessary) - you are taking 1 x 5mg at night. Possibly after 3 or 4 weeks you could try slightly reducing it and see how your WED/RLS symptoms react.
Yes, everyone has a fear of becoming 'addicted' to certain medications, we may be dependent in that we need a particular medication for relief taking as little as is possible and still get relief. Just as a diabetic would be dependent on insulin.

Treatment of WED/RLS is indeed a long road and it is hopeful that your doctor is at least willing to consider good reliable information.

[badnights]

Hi rlm and welcome. Good call on the augmentation issue! Physicians are usually surprised to learn about it because the problem doesn't happen with many (any?) other disease-drug combinations.

5 mg oxycodone is reasonable but by no means high. Despite the recommended max dose, when I was withdrawing from ropinirole augmentation, 10 mg did almost nothing, and I felt at the time that 20 mg maybe would have been barely enough.

Your withdrawal is likely to be or approaching its peak, and from here on things will get better. Many are over in 1-2 weeks. Only the worst last 2 months. It's good you stopped Lyrica in the meantime because you would have no idea how much you need. Once the withdrawal is over, you can start Lyrica again and you may find that what wasn't effective before is now effective because the w/drwal is over.

As for grogginess from oxy, I can't help you because it never made me groggy, Lyrica made me very sleepy the next day though. Many of that kind of side effect wear off after a couple weeks of use.

How to know when to switch back to Lyrica? Well.... no sense trying to remember what your symptom were like pre-Mirapex, because they would have progressed by now in any case. Maybe, it should be when your symptoms have stabilized and are not getting any better as the days go by? Someone who has augmented and been treated with opioids during withdrawal more recently than I might have more to contribute. I suffered tremendously then got to see a doctor who knew a wee bit about WED/RLS and went directly onto hydromorphone, which I'm still on.

[rlm]

Polar Bear and badnights,

Thank you so much for your help. I appreciate the reminders about not worrying about becoming addicted to the oxycodone. I was certainly "addicted" to Mirapex since I needed to take it daily for years. It doesn't have the stigma that narcotics have so it seems ok but it has its own problems.

Since I sent my initial post, I've had to take more oxycodone to keep the symptoms at bay. I'm now up to 10 mg a night. I have had some symptoms during the night and I get up and walk for a short while and they go away and I sleep again which surprises me. I feel really groggy during the day and this morning I threw up. I've only been off Lyrica for six days now and wonder if I'm still dealing with a mix of that with the oxycodone. I had been off Mirapex for about two weeks but was taking one .125 tab a night for about 3-4 nights with Lyrica and stopped it totally on Feb. 28th when I stopped taking Lyrica. It seems like a lot for the body to get used to. I'm also experiencing flushing and itching. It's been difficult to work . . .

I'm going to try ginger to help fight the nausea and hope that things get better.

Are these the kind of things others have experienced?

Thanks for your time and advice.

[ViewsAskew]

Itching is very common - and it can be serious and may be nothing. Do watch it to see. Nausea is tough. It could be that a different opioid wouldn't cause that, but it can be hard to get a script for something different.

How long were you on the Lyrica?

Hope it's getting a bit better...

[rlm]

Thank you, ViewsAskew.
I had taken Lyrica for two months, varying the dosage from 2-4 x 25 mg capsules, averaging 3 capsules a night. Is the withdrawal from Lyrica part of the problem?

This morning, nausea again and unable to go to work. I drank some ginger tea which helped the nausea.

I'm not sure what to do at this point. Continue on with the oxycodone and see if it gets better or try to get another prescription from my doctor? If I were to switch to something else, what would it be?

[Polar Bear]

rlm -
Dr Buchfuhrer has a site with letters and responses, hundreds of them.
http://www.rlshelp.org/
This link is to the site where you will find lots of really good straightforward and honest information.
His letters pages provide hours of interesting reading. There is also a lot of info with regard to medication.
Dr B is very supportive and a few of our members travel many many miles to have an appointment with him.

Dr B is also a co author of this book.. Clinical Management of Restless Legs Syndrome (second edition) by Hochang B Lee MD, Mark J. Buchfuhrer MD, Richard Allen PhD, Wayne A Hening MD is a wonderful source of information on all aspects of WED/RLS. I use it constantly for reference and take it with me to my doctor appointments. It is around £20 sterling on Amazon and well worth every penny.

Would your doctor be receptive to you providing relevant information.

[badnights]

Call the clinic and leave a message for your doctor who prescribed the oxy, that you're throwing up. It can be a side effect of oxycodone. I don't know if it might be serious or not, you should check with your doctor. Also, you might have caught a bug.

[ViewsAskew]

I agree with Beth about talking to your doctor. Nausea can also be withdrawal from Lyrica! This is from a medical site: "If you suddenly stop taking pregabalin, you may experience withdrawal symptoms, including trouble falling asleep or staying asleep, nausea, diarrhea, headaches, or seizures. Your doctor will probably decrease your dose gradually over at least one week."

[rlm]

Thank you all for your replies.
Polar Bear, I did send a letter to the So. California RLS group in February and got a reply within a day from someone that I assume is Dr. Buchfuhrer. The advice was to stop taking Mirapex and take either methadone or oxycodone until the symptoms subside and then slowly introduce Lyrica. I sent a copy of the e-mail to my neurologist and she agreed to try this approach so that's how I got to this point with the oxy. She seems willing to listen.

Badnights and ViewsAskew: As for slowly stopping Lyrica, I'm afraid it's too late. My doctor didn't advise me about stopping it slowly so I just stopped taking it altogether on Feb. 28th. In the past when I had surgery, I got sick from morphine so I suspect that me and opiates might not be a good combination but also as you suggest, it could be withdrawal from Lyrica or a combination of both. I felt less nauseated today and had no vomiting so perhaps I'm getting acclimated to my situation. Or maybe it was a bug. Very hard to discern what exactly is happening. My plan is to see how it goes this weekend and call my doctor on Monday.

I appreciate your help.

[Polar Bear]

You've got 2 full days until Monday.... let's hope that your nausea passes and that this has been a 'side effect' which you are getting through.

[ViewsAskew]

Thank you all for your replies.
Polar Bear, I did send a letter to the So. California RLS group in February and got a reply within a day from someone that I assume is Dr. Buchfuhrer. The advice was to stop taking Mirapex and take either methadone or oxycodone until the symptoms subside and then slowly introduce Lyrica. I sent a copy of the e-mail to my neurologist and she agreed to try this approach so that's how I got to this point with the oxy. She seems willing to listen.

Badnights and ViewsAskew: As for slowly stopping Lyrica, I'm afraid it's too late. My doctor didn't advise me about stopping it slowly so I just stopped taking it altogether on Feb. 28th. In the past when I had surgery, I got sick from morphine so I suspect that me and opiates might not be a good combination but also as you suggest, it could be withdrawal from Lyrica or a combination of both. I felt less nauseated today and had no vomiting so perhaps I'm getting acclimated to my situation. Or maybe it was a bug. Very hard to discern what exactly is happening. My plan is to see how it goes this weekend and call my doctor on Monday.

I appreciate your help.

You've hit the nail - or several of them - on the head. It's SO difficult to tease out some of this. We sort of just have to go with it and see.

I hope it abates - and very soon.

[badnights]

Good luck tomorrow with your doctor

[rlm]

Thanks for your support.

I was unable to talk to my doctor today but her nurse said she is willing to send another oxy prescription in for me (she's leaving for a vacation at the end of this week).

I'm not sure that's what I need at this point, but I don't know what it is that I need exactly. My concerns are that I'm waking up several times during the night with symptoms. Last night I woke up every hour for four hours in a row, had to get up and walk, and then went back to sleep until the next round. It appears that I must not be taking enough of the oxy to quell the symptoms through the night. I was taking 1.5 x 5 mg most nights and last night I took 2 x 5 mg. I also get a small, mild spell of symptoms during the day sometimes though they go away quickly. I'm not taking any oxy during the day. If I take more oxy, I'm betting the nausea and grogginess get worse. I keep hoping that it will pleasantly knock me out enough to sleep all night and then feel better the next day but that is fantasy at this point.

Any ideas? When do people take it and should it last through the night?

Are the Lyrica and Mirapex out of my system by now? It's been about 1 1/2 weeks without them.

I feel like I have to make suggestions to my doctor so I like to be ready for conversations with her.

Thank you

[ViewsAskew]

It's hard to know if the Lyrica (pregabalin) and Mirapex (pramipexole) are out. If you were augmented on the pramipexole - and sounds like you were - it can take several weeks to get back to "normal" - whatever that is for you. It took me at least 4-6 weeks for the augmentation to completely subside.

Because this is a transition, it's likely going to take a bit of time.