Switching from pramipexole to an opiate - What to expect

[Rustsmith]

I have been in augmentation from two different DA's for this past year, but have been forced by circumstances to keep taking increasing doses of pramipexole. I finally get to see a new doctor next week after waiting 3.5 months for an appointment. I am hoping that she will be willing to switch me from a combined pramipexole/gabapentin treatment to either a mono-therapy with an opiate or to a combined opiate/gabapentin regime.

My question is, what should I expect for the transition period from pramipexole to an opiate. I am currently getting an average of 4.5 hrs of sleep each night and frequently have significant RLS symptoms due to the augmentation. Will the opiate completely cover the DA withdrawal symptoms during the transition so that I will be able to sleep at least as much as I do now, or will I just have a mild version of the problems that I would experience by going cold turkey? This is one of those questions where I trust the answers here from those who have experience more than I would trust what my new doctor will tell me.

Also, the reason why I ask is because I have several things on my schedule for the next month where I need to be clear headed and not more sleep deprived than I already am.

[ViewsAskew]

I can share what happened to me. But, it was a long time ago and I had been so sleep deprived, I may not remember correctly. At the time, I was sleeping .5 to 1 hour a day - for a few months - and I was damn tired.

I had tried multiple times and couldn't handle the increased symptoms. When I used methadone, I was shocked at how well my symptoms were covered. I had almost no breakthrough. I did have massive itching - enough that the doc and I almost stopped it. I used an antihistamine as I would rather have had some increased symptoms than give up that coverage. I slept about 10-12 hours a day initially. No break in period - just instant and blessed sleep. I was not at all sleep deprived.

What I cannot remember is if the opioid fogginess started immediately. I don't think it did - rather I think it was my first dose increase (tolerance). When I moved to a slightly higher dose, I started being really tired in the AM; it would go away at night. Pretty sure that's when the insomnia started, but mild. It got worse over time for me. I honestly don't think I had many issues for that first 6-8 months.

But, I eventually even figured out how to manage that by breaking my dose into smaller doses. Since it had such a long half live and since I needed the least in the later morning and could sleep in, I just slept later.

For me, none of the issues started immediately or all at the same time - it was more gradual.

OH - just remembered one more thing...I'd been given a benzo. It didn't really help, so I stopped it cold turkey when I started the methadone. Turned out to be a huge problem and I spent about 6-8 months slowly (very slowly) tapering. It could be that I didn't have the insomnia until after I'd stopped the benzo...I have no way of knowing.

[stjohnh]

Steve,
My situation is somewhat different, however I am using Kratom now on probably a temporary basis. I augmented on pramipexole a month or two ago and was able to switch to Neupro patches, sort of following the international restless legs study group recommendations on augmentation which on page 15 recommends switching a short-acting DA to Neupro patches as the middle option. I had not been on an extremely high dose of pramipexole so switching wasn't too terrible. I added Gabapentin at bedtime during the switch. I did not use any opiates while switching from pramipexole to neupro Patches.

The augmentation spell however has scared me so that I am interested in keeping the dose of DA as low as possible. To that end, I have spent the last week off DA, building on the idea that a long-term plan may entail either staying on low-dose DA and adding low-dose opiates or kratom. An alternate possibility that I am considering is 3 weeks on neupro alternating with one week on Kratom or opiate.

Back to your original question, over the week I have been off neupro patches I have been handling my RLS symptoms primarily with Kratom, occasionally using hydrocodone if I had a particularly bad time. As others have noted the worst part is the first couple of days off DA. I am now on day 6 off neupro and have gradually decreased my Kratom dose from 8 grams a day the first night off Neupro to currently four and a half grams. The two times I did take the hydrocodone, I did have better relief than with Kratom, although clearly the Kratom helps quite a lot. When you had a previously poor response to Kratom, it's possible you either didn't have a high enough dose or didn't have one of the strains that is particularly good for RLS. I tried a few strains, and so far the best seems to be the red vein Borneo, which other Kratom users have recommended.

[Rustsmith]

Holland, I augmented first on pramipexole and later on Neupro. My doctor at that time put me back on pramipexole, but with the guidance to increase as high as 1mg. This was to be a temporary expedient until I could get into a new doctor following my move to Colorado.

The reason why I posed this question was to get an idea of what it will be like so that I can arrange my schedule accordingly. I have to a wedding to attend and also a very important meeting with a client. Both of these will require me to be on top of my game and not going through anything like the experience that you can find documented on the board (in several threads) of those whose doctors had them go completely cold turkey.

I have a supply of red vein borneo kratom. It provides some relief, but not a lot. This was not particularly surprising to me since none of the prescription sleep meds do much for me either (benzo's make me stagger like a drunk but don't put me to sleep and the newer drugs often don't do anything at all).

I have a supply of various edible marijuana products and these seem to help more than the kratom, but I suspect will not be strong enough to completely cover my transition off of 0.875mg/day of pramipexole.

[Stainless]

Stjohnh, you said you took 8 grams of Kratom a day. How did you take that much? Was it in powder form? I got some red vein Borneo but have a hard time getting 2 grams down. 8 grams would be overwhelming.

[stjohnh]

I take red Borneo Kratom, 1.5 g per dose. I weigh it, but that is about 3/4 tsp. I put it in about 2 Tbs grapefruit juice, mix it up and put in fridge. Take 1 dose as needed to control jumpy feet, but never less than 1 hour between doses. I usually mix up 5 doses each evening. Drink ice cold. Relief starts in about 20 min.

I tried medical marijuana, made trying to sleep a little nicer, but didn't actually help feet at all. Kratom is MUCH better for me.

[stjohnh]

Holland, ....I have a supply of red vein borneo kratom. It provides some relief, but not a lot. This was not particularly surprising to me since none of the prescription sleep meds do much for me either (benzo's make me stagger like a drunk but don't put me to sleep and the newer drugs often don't do anything at all).

Steve, kratom is not a sedative, it's primary effect is stimualting the mu-opiate receptors, same as morphine, even though it is not an opiate. Most commonly used for pain relief. Perhaps it is worth a try again. Still, stopping the pramexipole is likely to be difficult, no matter how you do it.

[Rustsmith]

Yes, I realize that kratom is not a sedative but is a mild opiate. I guess that I did not explain my point very well in that the strength of my RLS is so severe that it appears to overwhelm most medications intended to treat the symptoms. I also seem to not see any benefits from a variety of other drugs not associated with RLS, such as over-the-counter NSAIDs, antihistamines (they don't effect my RLS either) and of course the sedatives that are regularly prescribed for sleep issues. The alpha-2-deltas also don't do much for me other than make me drowsy (which is more than any sedative has ever accomplished). Unfortunately, their half life is such that they only provide about 4 hrs of sleep.

[stjohnh]

Well, remember that while augmenting, any treatment is going to be less effective until you have been off the DA at least several days.

[Rustsmith]

I just arrived home from a full day trip to visit me new doctor who is 100+ miles away. It was a 3 month wait to get the appointment today and the wait was probably worthwhile. The appointment was everything that I could have asked for (other than for it to have been 3 months ago). I made sure early in the conversation that she was aware of my role with the Foundation and this board. That elevated the level of the conversation from one of doctor educating the patient to one of a two way exchange of information and no fear on her part to speak more technically. She explained what she wanted to do with my treatment, we negotiated a bit and both came away satisfied with the result. She also asked me about a couple of issues that have been discussed here, such as deep-brain stimulation and the use of suboxone. She was interested in the level of interest in the patient population in DBS and whether anyone was seeing any benefits from suboxone. I didn't give any details, but did tell her about the general direction that these discussions have taken.

As for my new treatment to get off of DAs, I will begin SLOWLY titrating off of pramipexole while simultaneously titrating up on methadone. I am to go back in three months and will still be taking 0.25mg pramipexole at bedtime when I go back. I suspect that the final step off of pramipexole will come at that appointment. I also now have the use of marijuana to aid my sleep on my medical record and my doctor's blessings and instructions to continue what I have found to be effective.

So, directionally my learning about finding a new doctor has been to find someone who is somewhat recently out of med school and specialist training (compared to my 44 yrs of work experience), is either practicing sleep neurology or is a movement disorder specialist, lists RLS as an area of interest and finally, someone who is conducting research full time and sees patients part time. The research angle forces them to stay current. The downside is that the part time clinic hours make it very hard to get an appointment, but this combination seems to be an optimal compromise. She was the fourth neurologist that I have seen in the last four years and she was asking questions that no physician has ever asked and spent more time with me (1.5 hours) than any doctor has in many years.

[ViewsAskew]

[Polar Bear]

Steve. I'm smiling as I read your post, how wonderful to have found a doctor who gets it.

[Rustsmith]

Viewsaskew wrote:

I had tried multiple times and couldn't handle the increased symptoms. When I used methadone, I was shocked at how well my symptoms were covered. I had almost no breakthrough. I did have massive itching - enough that the doc and I almost stopped it. I used an antihistamine as I would rather have had some increased symptoms than give up that coverage. I slept about 10-12 hours a day initially. No break in period - just instant and blessed sleep. I was not at all sleep deprived.

In the first two hours after my first dose of methadone the tremors and tension throughout my body that I have been living with for the last nine plus months was gone. I am now into my fourth day and so far my RLS is most noticeable my its absence. So far I have not had any side effects of the methadone at all. This has left me almost giddy. I had forgotten what it was like to be able to relax completely. The augmentation was causing a low level of tension throughout my body that was always there, and now it is gone. During the past month I had also developed Parkinsons like tremors in my hands and arms that was there all day long. When I was traveling early this month, I half way expected to get picked up by airport security because I was shaking like someone who is very nervous, but I guess that they passed it off as the cold temperatures. As for the tremors, they were gone in 30 minutes and have not come back.

So, at this point the methadone seems like a miracle, even though I am at a very low dose and still take 0.5mg pramipexole. But I also remember how much of a miracle pramipexole was with that first dose, so I have to keep reminding myself that this is not forever - just hopefully for a VERY long time.

[ViewsAskew]

That is very, very similar to how I felt. Except for your last sentence - it was truly a miracle! It didn't stay that way, however. While some of us can keep our dosages the same for many years, some of us have tolerance. My advice - which you likely already know - would be to 1) keep the dose low enough that you have minor symptoms; complete coverage can be an issue, 2) once you are through augmentation and your dose is stable, watch for any tolerance.

I've only been able to manage tolerance by switching meds. You might find that you'll be able to use the alpha-2-whatchamacallits and this won't matter...

[badnights]

Wow, Steve. Thank goodness!!

my learning about finding a new doctor has been to find someone who is somewhat recently out of med school and specialist training..., is either practicing sleep neurology or is a movement disorder specialist, lists RLS as an area of interest and finally, someone who is conducting research full time and sees patients part time. The research angle forces them to stay current. The downside is that the part time clinic hours make it very hard to get an appointment, but this combination seems to be an optimal compromise. She was the fourth neurologist that I have seen in the last four years and she was asking questions that no physician has ever asked and spent more time with me (1.5 hours) than any doctor has in many years.

This is important advice for anyone looking for a new doctor. I hope everyone can see that it's worth the effort.