Thoughts on how long to taper off Mirapex

[ethan]

All,

I have been taking Mirapex .375 for about 5 years now and it's not working well anymore. I have also been using 2-4mg of dilautid (was really helpful at first and then stopped being as effective). My sleep doc wants me to transition off mirapex and has put my on Horizant. We started with 600mg of Horizant....which helped me sleep but I was super tired all day. He recently switched me to 300mg which is better. He told me to wean off the mirapex and told me to decrease by one pill (.125mg per week) which I felt was too aggressive. Here is what I did:
I was taking .375...for one week I took .3125mg (2.5 .125 pills)
The next week I took .25 (2X.125 pills)
The next week I took .1875 (1.5 .125 pills)
I am now down to .125 (plus 2-4 grams dilautid + 300mg Horizant + cannabis)
In a week I was going to go down to .0625 for another week and then stop

So basically the wean off from .375 will occur over a 5 or so weeks. Does this seem reasonable?

Some nights I sleep half decent, other nights not so much. The other thing that is happening that is completely new is I am having leg movements around 5am...in the past I only had them for the first part of the night. I am pretty tired during the day and am struggling with making it through the day. I don't feel very sharp. It's hard to know if these symptoms are the result of the Horizant or weaning off the Mirapex or both.

I feel like I am practically disabled with fatigue and brain fog. The impact on my life is pretty rough (I am 43 years old).

Any thoughts are appreciated.

Thanks,

Ethan

[Rustsmith]

Ethan, I hope that you realize how lucky you are to have a relationship with a sleep doctor who not only understands RLS, but also knows enough to have taken you along this path for getting off of Mirapex. If you look through the various threads about augmentation and issues getting off of Mirapex (pramipexole), you will see quite a number of horror stories.

You are also fortunate that you doctor was willing to give you dilautid for the transition. There are two ways to get off of Mirapex. Some doctors recommend the cold turkey approach, which means that you get ZERO sleep for about a week and then gradually get more and more sleep until you are supposed to be back to your normal after about a month. The other approach is to provide an opiate to cover the withdrawal symptoms from the Mirapex. The proponents of cold turkey say that this just delays the problems until you eventually have to get off of the opiate (if that ever happens).

So, to answer your question, the timetable that your doctor has given you is somewhat slower than normal, but not out of the ordinary. Your problems may not start until your doctor starts to cut you off of the dilautid (if that is the plan).

I noticed that you mentioned cannabis, are you smoking it or are you using an edible and when are you using it? I have personally found that using an edible form at bedtime has helped me stay asleep longer. The advantage of the edible is that it takes 2 to 3 hrs to become completely effective, so it is sort of like a delayed time release form of THC. This allows it to stay in my system until the time that I would otherwise be waking up.

As for the brain fog, that could be the Horizant, the dilautid, the cannibis or a combination of the three. You have already backed off of the Horizant dose, have you considered using the minimum dilautid to see if that would help? As for the cannabis, have you tried changing to a product with a different THC/CBD ratio? I found several ratios that were beneficial but in different ways. I currently use a 100% THC product because that is the one that helps me stay asleep. More CBD helped reduce the early morning (pre-coffee) brain fog, but wasn't as effective at extending my sleep.

At this point, the only thing else I can suggest is to keep at it. It will get better once you get all the various meds lined out. I know because my current treatment is not that much different from where you are at right now. I have gone from 0.875mg Mirapex to 0.25mg in the last six weeks. My average sleep times have gone from 3.5-4 to about 7. I have gone from being so sleepy during the day that I could not safely drive from more than 30 minutes to having spent most of the day today on the road. So, it does get better.

[ViewsAskew]

One thing to add to what Steve said - there are two approaches to reducing the pramipexole itself - cold turkey or reduction. At the rate you are taking it, most docs seem to recommend cold turkey. Even if you use an opioid to cover, then reduce the opioid, you stop the pramipexole immediately. Same if you use nothing to cover the increased symptoms.

[ethan]

Steve,

Thanks for the info and sharing your experience. My cannabis experience has been similar to yours in that CBD didn't seem to be all that effective (I did chat with an herbalist and she said I should try using it during the day and night- which I haven't). I have experimented with smoking and edibles. I find that if I do too much edible my morning is super rough. Yes, I am lucky this sleep doc is willing to prescribe the opiates. That said, I am not sure how much it is doing- he weaned me down from 4 to 2 mg- 4 works better. Glad to hear you are doing better. I am looking forward to being on the other side of this...hopefully the Horizant alone can actually work (plus maybe some kratom).

Thanks again,

Ethan

[badnights]

Hi ethan
Have you been able to determine if you've augmented from the pramipexole? That might affect your experience coming off it. If you've augmented, cold turkey is probably a better way to go. The problem with a long taper is that you start being unable to sleep almost right away, no matter which way you do it, so the long taper just prolongs the agony.

2-4 mg Dilaudid/hydromorphone (I assume you mean mg not g) is not much; it's no wonder it does little to control your symptoms. I'm not sure if the dosing of Horizant is similar to that of gabapentin - if so, 300 mg of that is not much either. What is your doctor's plan to treat your symptoms after you've cleared the pramipexole out of your system? It would be nice if 3 mg Dilaudid and 300 Horizant covered it off, and that's possible, but if not? You might want to discuss a what-if scenario with your doctor, in case those low doses aren't enough.

If you're augmented now, what will happen after you cut out the pramipexole is an initial period of more suffering (increased symptom severity, spread to other body parts, lack of sleep) but after it's all out of your system, your symptom severity should drop to less than it is now. Perhaps low enough to be handled by 2-4 mg etc. But it would be best to have a plan for dealing with it in case that's not enough.

[ethan]

Beth,

Thanks for your thoughts. Frankly I am not sure if I am augmenting or not. I just know that the mirapex just isn't as effective as it was at my dosage of .375mg. I have been doing (somewhat) ok with decreasing the dose- I have some nights of ok sleep and other nights not so much.
Yes the dilautid is in mg so I am taking 2-4 mg. I was using 4 but the sleep doc wanted me to decrease to 2. His long term goal is for me to be on Horizant by itself- I am not sure if this is realistic. Here is what I can tell you....when I take 600mg of Horizant I feel like complete sh_t the next day- 300mg is better in terms of the side effects.

Either way this whole thing is a complete drag- it seems like these medications are a bit like a deal with the devil.

[Rustsmith]

Ethan, the maximum recommended dose for Horizant is 600mg, so it isn't surprising that you had issues with it by starting out that high.

As for whether or not you believe you were augmenting on pramipexole, take a look at the second posting in the Augmentation forum. It provides quite a bit of information you can use to evaluate whether you think that you were augmenting. But, basically, if you were not doing as well near the end of the time you were taking 0.375mg pramipexole as compared to before you started taking it, then you were probably augmenting.

[badnights]

it seems like these medications are a bit like a deal with the devil.

so true! But Steve is right, and perhaps if your Horizant dose is increased slowly, the side effects won't occur. Maybe.

If your doctor decides you need to get off the HM and you feel that you shouldn't, be sure to ask him why he feels you need to. If he is only worried about addiction, he may be receptive to learning that addiction is less common in WED/RLS patients than in chronic pain patients, who themselves have lower addiction rates than the general population. I would need to dig around a bit to find the paper where I read that (it wasn't based on a large study, but it's one of at least two studies I know of that monitored addiction in WED patients, with similar results).

Please do check the post Steve referred you to (viewtopic.php?p=79127#p79127). Loss of effectiveness without any of the other symptoms might simply be tolerance, but combined with any of the other symptoms, you're probably experiencing augmentation. If you want to delve into the literature on augmentation a bit more, try the link in my signature line (below).