I'm still here and still feeling the WED

[pamndorr]

Quick question...I saw my Dr. at U of M last week. She told me she is on the WED board for the mid-west...I think that is the area she said. She also said she was going to a conference out west soon for WED. I am so thankful that I found my way to Dr. Goldstein.....
Anyway we were discussing my WED symptoms and how I am doing on the drug regimen at this time. Told her good and bad days...but I am learning to deal with it all. Which as we all know is not an easy thing to do.
She told me I have one of the worse cases of Refractory WED she has seen. She said she has been looking in this general area...MI, OH, IL for a study to put me in. I told her I was willing to travel to wherever need be to get relief so I don't have to continually change drugs. She talked about a drug in Canada that they are using now that they see good results with. Unfortunately it is not available in the US at the moment. I can't recall the name of the medication.
So my question is this...what does Refractory WED mean and does anybody know of a new medication in Canada that is being used now and any luck with it?
I have missed my WED friends on here...my life support when life gets tough and all I want is out. I love you all... I hope I can some day get my head together enough to help some others on this site.
I am still trying to deal with life the way it is now.... one day at a time...right?

[Polar Bear]

I understand refractory to be when the severe WED symptoms just won't respond to normal/usual treatment. A quick google brought up this comment....
Refractory RLS is daily RLS that has been unsuccessfully treated with two classes of drugs (one dopaminergic and one non-dopaminergic) at the correct dose and for an adequate length of time. Refractory RLS should be referred to the appropriate specialist and no longer be treated in the primary care clinic.

I think that last year Neupro was approved for use in Canada and I wonder if that is what your doc is talking about.

[ViewsAskew]

Some of us just don't seem to have good results. We get infusions, we try different combos, we change our diets, we cut out the no-no drinks - and we still suffer.

I know of nothing in Canada in trials that would be a game-changer....maybe Dr B knows of something?

[Joanie60]

I've probably got refractory RLS/WED by those standards...tried more drugs than I can remember, iron infusion, etc. Percocet is a miracle drug for me. Doesn't SOLVE the problem but sure does help. Even with that, if I up my dose of antidepressant (Lexapro) from 30mg to 40mg, I am in for a rough ride. Glad I finally figured out the connection! But it is a balancing act. Sometimes I need more Lexapro and will put up with the extra WED symptoms because I don't sleep anyway when depression rears its ugly head. Just goes to show how delicate the balance is with our amazing bodies and our annoying diseases!

[pamndorr]

I had to go look through some notes from my doctor for the name of that drug. It is called Targin. She said some people are having good luck with it but it's not available in the US at the moment. I'm at a point with this disease where I will gladly participate in a study to see if it helps. Can't be much worse then this bumpy roller coaster ride I am on now. Right??? Has anybody in Canada tried Targin yet and are you having any luck at all?

[ViewsAskew]

It's an opioid - here is info on it.

http://chealth.canoe.ca/drug_info_detai ... me_id=5531

It has naloxone in it - which relieves contipation. Essentially, it's oxycodone. This is used in Europe already.

[pamndorr]

I'm already on OxyContin. These opioids confuse me as to how they work. I was sick as a dog on Methadone, but it did take that pain away. I went to oxycodone and it didn't really help much. She switched me to OxyContin and I do pretty good on that. It's not controlling things at the moment though. But I can't imagine what life would be like without it on board.

[badnights]

Oxycontin is just an extended:- released form of ocycodone so the only way I know of for the former to benefit u more than the latter is by its longer term of action.

And I am pretty sure targin is not a miracle drug. You could get the same effect with two separate prescriptions, for naloxone and oxycodone ( or contin). And as far as I can tell all the naloxone does is make doctors feel better that they're no t prescribing something as addictive. Supposedly. If oxy is barely working for u, don't get your hopes up for targin.

[Neco]

What is your Oxycontin dose? (what strength are the pills and how many times per day) and what was your Methadone dose?

Methadone is extremely powerful, and I was recently forced off it by my new doctor, so I've had a hell of a time adjusting to extended release Morphine. There needs to be great consideration for narcotic tolerance when taking people off Methadone, as starting with a low-dose usually ends badly.

I'm currently trying 30mg Morphine ER every 8 hours (90mg / day) which is finally seeing things working out better for me. And it makes sense if you look at conversion charts (they are not exact but often close enough) because Methadone has a 3:1 strength ratio over Morphine (30mg Morphine is roughly equivalent to 10mg Methadone). I was on 15mg - 20mg daily for Methadone so starting me out on less than 60mg/day was stupid on my doctors part.

But it may be also that your RLS is just that severe as well. If Methadone worked well for you, Dilaudid (Hydromorphone) might work as well, and I think it comes in extended release formulas.


The definition for Refractory RLS, according to Mayo is here.
http://www.mayoclinicproceedings.org/ar ... t#cesec100

[pamndorr]

Hi Zach...I was on 10mg of Methadone twice a day for 8 weeks. At the same time I was also coming off of a high dose of Requip. I believe I was taking 14mg of Requip a day when the doctor took me off it for my drug holiday. That's when he added the Methadone. So I am pretty sure that I was having withdrawal symptoms from the Requip while I was starting the Methadone. Then just because I was so new at all this WED stuff, I decided to not take the Methadone one day. I thought I felt better the WED wasn't bothering me so in my mind I was ok to go off the Methadone with nothing to replace it with....HUGE mistake....worse days/nights of my life. That was a few years ago. Since then the doctor that was treating me had to retire. I ended up being a human guinea pig for all the doctors that followed...and there were a lot. Hard to find somebody that knows what they are doing with WED and the drugs. The doctors had me in a mess...again on high doses of Mirapex..which I will never take again.
Then last fall I found a primary that was smart enough to admit that he didn't know how to treat me. He sent me to a sleep doctor and she admitted she didn't know how to help me and she said she wasn't putting me through anymore drug switches. She referred me to U of M and there I found my doctor. Its a bit of a drive but worth it to have somebody that understands this disease.
Now I am on 10mg of Oxycontin twice a day along with Ropinerole. At the moment I am on 3mg of that split through the day and I have good and bad days and nights...but I can handle the bad times at the moment. For whatever reason the Oxycodone didn't do what it was supposed to for me. Must be I needed the extended release kind. I get so confused with all the drugs...I just know what works for me and what doesn't.
I hope you have some luck with the doctor you are working with. If not...run as fast as you can to a doctor that understands the disease and the drugs.
One of my biggest fears is doctors that want to play with my drugs. I can not even begin to imagine what kind of hell somebody would go through if put in a nursing home with this disease...I keep telling everybody if I end up in the hospital or a home someplace one day....make sure I have my drugs because I know the hospitals and homes will not let you keep them....

[Neco]

If the Oxycodone wasn't helping, it could be that you were experiencing augmentation from the Requip (did you augment on Mirapex? your symptoms got worse and more often?) so what little Oxycodone you had wasn't enough to deal with that. Or it could be that the dose of Oxycodone was simply too low.

I will never take Requip / Mirapex ever again. Requip gave me nausea and strange intense headaches, and Mirapex made me augment on my first dose.


I hope you eventually get the help you need.

[pamndorr]

I have augmented on both Requip and Mirapex over the years. Each time came with a drug holiday to get me off whichever one I was on at the time.
I seem to have problems with every other kind of drug that is used to treat WED. Strange side effects on most of them. Seems that the dopamine drugs do best for me...until the dose gets too high. That's when the side effects start. The ones that mess with your mind....gambling and shopping and thinking about suicide are the worse. They make my mind feel strange when the dose gets up there....hence the Oxycontin now so we can keep the dose of Requip lower.

[skn0412]

It is my understanding that once you Augment on Requip or Mirapex, you will always augment and can't take a DA drug again. What happens is that your body produces less Dopamine, you increase your dosage, and your body makes less, you increase your dose, your body makes less....hence the continual need to increase your dosage. Have you tried Gabapentin (that's the generic Neurontin)??
Hugs !!

[ViewsAskew]

It is my understanding that once you Augment on Requip or Mirapex, you will always augment and can't take a DA drug again. What happens is that your body produces less Dopamine, you increase your dosage, and your body makes less, you increase your dose, your body makes less....hence the continual need to increase your dosage. Have you tried Gabapentin (that's the generic Neurontin)??
Hugs !!

I always thought that was true...but found a way to take a DA again after augmenting. I augmented on three DAs - and very quickly. But, I was able to use pramipexole again. I just didn't use it all the time. I took it 1 or 2 days, then took an opioid for 1 or 2 days, then back to the pramipexole. It prevented me from augmenting and I did that for over 2 years. If anyone ever finds that they can't take an opioid regularly nor can they take a DA regularly, this may be a life saving way to do it. It was for me!

[pamndorr]

I have tried so many different drugs for this. Gabapentin and Neurontin included. They both gave me bad nightmares and leg cramps that would knock me to the ground and I couldn't get up for quite some time..oh yeah and I gained a bunch of weight on both of them in a pretty short time. The only drugs that I have any success with are the dopamine drugs. At the moment the Ropinirole and Oxycontin are doing the trick. I am starting to augment...but so far just playing with the doses of both meds and the times taken seem to be controlling things to where I am not miserable.
When I have a real bad day/night...I walk and walk. That I am getting real good at!!!