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Re: Introducing myself

Posted: Wed May 30, 2018 4:44 am
by badnights
Jim, I agree that your taper is probably too long and that gabapentin won't cover your symptoms.

See if you can afford Horizant (gabapentin encarbil) instead of gabapentin. Horizant is absorbed less erratically than gabapentin and therefore has a more consistent effect. =Whichever one you use, I suggest you don't ramp it up very high until you've been off the pramipexole for a while. Gabapentin can have some bad side effects (weight gain/change in eating habit, severe mood swings). I found with gabapentin that my urge to move was still there, although the abnormal sensations were helped by it. Even at 2100 mg a day combined with a hefty dose of codeine, it was not enough.

So I suggest you get a supply of kratom to help you thru the withdrawal, if your doctor won't consider opioids. You can search the board for lots of suggestions on how to buy and use it, but I have included a summary of what the main points of agreement seem to be concerning strains to buy and where to buy it from. As for how to use it, please search.

Good for pain, WED, sleep:
Red vein Borneo
the red strains
Horned Red (potent sedation)
+- Thai red vein (one person).

Thai red vein

Good for daytime – relieves WED and is stimulating:
Maeng Da
the green strains
the white strains
Yellow Borneo

Places to buy kratom, tested & verified good by board users:
So Cal: (search for speciosa, a tea)
Velvet Soul Naturals: (search for Mitragyna. Always finely ground and fresh)
Kat's Botanicals:
Valkyrie Botanicals:
Tea Time Botanicals:
Mystical Island: (no one on the board has tried it but a number of people have heard on Reddit that it’s good)
For pouch discs to put it in,

Re: Introducing myself

Posted: Wed May 30, 2018 4:55 am
by badnights
Hi Everyone
My name is Kathryn - I'm a 63 yr old female that has had RLS since I was 18 yrs old. They were lways manageable with many nights up running around dining room tables, but I was able to maintain a normal life until I turned 45. I Went to my internist and she RX Carbidopa/levadopa 25mg/100mg. which worked for many yrs until I augmented. I then went to a sleep specialist and was given pramiprexole 0.25mg. It worked for few yrs then I found myself doing more and adding the Carbidopa /levadopa to the regime until I discovered something that has changed my life with RLS! I found water to work for me. If I keep drinking water until the sensations disappear ( usually drink about 3-4 8oz glasses) the RLS stops, It works every time even on an airplane. BUT I still have to take 0.25 of pramiprexole and 1/2 of the Carbidopa/levadopa at 7 pm, this gives me total relief and no augmentation, plus I sleep thru the night. I would like to get off the pramiprexole and am learning from your posts. Thank you!
PS my symptoms are creepy crawly sensations in my legs that are somewhat relieved with standing/walking. My symptoms were always worse when I traveled which I now realize was because I drank far less water when traveling.
Hi. Kathryn. Wow! I think I've heard someone talk about the water thing before. I have certainly heard it mentioned that dehydration may exacerbate the symptoms. Very interesting.

I am concerned that you're still on pramipexole and taking levo-carbidopa after so many years. I find I get horrible rebound from the LC - almost exactly 4 hr after I take it, I have wicked symptoms. So I only use it when I have to get up anyway in less than 4 hours! But mainly, it is so easy to augment on that I never take it more than 2 or 3 times a week.

You are at the maximum recommended dose for pramipexole, which is 0.25 mg (according to new-ish suggestions by various WED/RLS specialists, such as Mark Buchfuhrer, see his paper in the link under my name below this post).(Also some interesting articles on iron and augmentation in there). So I think you're making the right move to get off it. If you did get off it, you would see what your baseline symptoms are like - probably less than now, because I suspect after so long you must be augmented - and perhaps you wouldn't need medication at all. But no way to tell without going through the withdrawal, during which your symptoms will become much worse, temporarily.

You should get your ferritin level checked, and start iron supplements if it is under 100, as long as there are no counter-indications. Low ferritin is directly related to worse symptoms, and to increased liklihood of augmentation.

Re: Introducing myself

Posted: Wed May 30, 2018 9:53 am
by sleepdancer2
I am not knowledgeable enough about the specifics of weaning to have a meaningful opinion about your doctor's prescribed schedule. I do have firsthand knowledge with stopping abruptly and it causing neurological issues that turned out to be permanent. Your doc may prefer to err on the side of caution - you will have to figure out how closely to follow their recommendation. Especially in view of how long you've been on the med, I encourage you to step down your dosing and not unnecessarily risk the problems I've encountered. Even when the risks are low, someone has to be the unlucky one in those stats. Getting off the dopamine meds after augmentation was one of the worst but best things I've ever been through. I did not have opioids and in retrospect wish I'd had some help but had not found this board to know what was helping others get through this. Once my system was cleared and my RLS and periodic limb movements were at a baseline, I found using a TENS Unit at bedtime as prescribed for lower back pain really helped take the edge off my symptoms.

Re: Introducing myself

Posted: Sun Jul 29, 2018 1:17 am
by obviouslyjim
Hi folks.
Time for an update. I'm now about 10-weeks into the journey of weaning off pramipexole. A pretty crappy 2-months, too, I might add.

The good.
I've lowered my pramipexole dose from 1.0mg down to 0.25mg. My Doc has agreed to add oxycodone into the mix. Ferritin now at 71 (up from 57).

The bad.
Pretty much everything else. Gabapentin was a disaster. Every possible side effect; collected the whole set. Mainly grogginess, mood/depression & daytime tiredness. After 7 weeks, switched to pregabalin. Improved (ie, less bad), but not enough to continue for very long. It was already on a short leash after the challenges with gabapentin.

The current.
So, my current recipe is .25mg pramipexole & 10mg oxycodone. [0.25 was my original starting doseage from 10 years ago]

What I'm now wondering...
in the face of poor gabapentin/pregabalin results, is there another non-opiod option?
should I be aiming to get off pramipexole altogether? Or be content with the reduced doseage?
would a pramipexole-free stint be useful (2-weeks, say, with the help of opiods)?


Re: Introducing myself

Posted: Sun Jul 29, 2018 2:07 am
by Rustsmith
Jim, the current "approved" treatments for RLS are the dopamine agonists, the alpha-2-delta ligands (gabapentin, Horizant and Lyrica) and the opioids. Current research at the National Institute of Health is in the process of developing a non-opioid option with dipyridamole (an anti-clotting agent for blood) as the first drug in this class. Work so far has been very limited, but things look promising. A couple of our members have tried it and although it wasn't a cure-all, they both were happy with the results. Unfortunately, most of us are going to have to wait a year or two to be able to use it.

The only other class of meds that is used are the benzodiazepines. These are the classic, old style sleeping pills and are not compatible with opioids. They are also one med that some say can be even more difficult to get off of than the DA's. It is very unfortunate that most of the meds that can be used to treat RLS either cause us to become highly dependent, have terrible side effects, or both.

Re: Introducing myself

Posted: Mon Jul 30, 2018 8:17 pm
by obviouslyjim
Thanks, Steve.

Is there a general consensus about the value of going completely off pramipexole for a week or two? I've read posts suggesting it will re-baseline receptors. My next Doc appt is coming up & I'm wondering if I should push for that outcome.

Re: Introducing myself

Posted: Mon Jul 30, 2018 9:49 pm
by stjohnh
I'm not sure that it's known if a low dose of pramipexole after a person has been on a high dose resets the receptors in the same way as being completely off it. I suspect that since some of us have been able to have a good result with extremely low dose pramipexole combined with other medications, after we have been completely off it, that it is indeed necessary to be completely off it for a week or two (or possibly longer) to completely reset the receptors. I take 0.0625mg daily- 1/2 of the smallest dose tablet.

Remember that there is evidence that people with RLS have excess dopamine already in their brain, and using a dopamine agonist stimulates the already over stimulated receptors. That would lend some theoretical weight to the idea that a person needs to be completely off of the dopamine agonist before the receptors could get back to normal.

I certainly understand your hesitation, the week or two I was completely off pramipexole was one of the most miserable in my life.

I am one of those those on dipyridamole. It has certainly made my day time life considerably better. It doesn't seem to change the urge to move for me very much or my subjective night time sleeping experience. It does however give me much more energy during the daytime. It is not a small effect, it is a big effect.

Re: Introducing myself

Posted: Fri Aug 03, 2018 2:56 am
by badnights
No one knows for certain but I caution against a mere 1 or 2 week "holiday" from pramipexole. I think for some of us, things don't return to normal for years after augmentation. If gabapentin gave you those side effects, then Horizant is out; and anyway anti-convulsants by themselves don't work for most of us (though they do work for a few people). Likewise, the benzodiazepenes are not effective for most of us, and just make us sleepy-brained while having to move around, stumbling into walls etc. As I see it, you're left with opioids, or a combination of two or more of dipyridamole, opioids, and a small dose of a DA - after at least a month (my opinion, or even 6 weeks) off all DAs.

Re: Introducing myself

Posted: Sun Aug 05, 2018 8:04 am
by obviouslyjim
Oh, OK. That's helpful & good to know... I'll adjust my thinking in anticipation of a longer pramipexole-washout (a more apt term, me thinks, than 'holiday'). Btw, I am now in the 4th day of my washout. Currently taking 30mg oxycodone, over the course of the night, in a combination of quick-release & controlled-release tablets. Trying the find the best recipe/timings to cover symptoms but not be too zoned out in the morning.

As the washout progresses, am I correct in assuming the level of oxycodone will gradually reduce? And what sort of markers tell you it's time to stop? Is it all symptom-based?

Re: Introducing myself

Posted: Sun Aug 05, 2018 12:56 pm
by Wealden1640
Hi all...I tried to post once when I wasn't sure what I was doing, so don't know if it posted at all!

Has anyone tried cannabis oil ???

Re: Introducing myself

Posted: Sun Aug 05, 2018 4:05 pm
by Rustsmith
If you look in the Non-Prescription forum at the thread on medical marijuana, you will find a very long discussion about all forms of cannabis.

But to summarize the experience of most of us, oils, tinctures and vaping/smoking products that are high in THC provide very quick effects that help with insomnia, but do not provide much relief for movement issues. Unfortunately, these forms of ingesting THC also wear off rather quickly. Edible products (candy, cookies, brownies, ...) take an hour our so to kick in, but last longer.

As for THC vs CBD, most of us find that THC helps with sleep and that CBD often does not provide much benefit. My personal experience is that CBD oil/tincture provides almost immediate relief for RLS induced anxiety but doesn't do much else for my RLS.

Re: Introducing myself

Posted: Mon Aug 06, 2018 2:44 am
by badnights
obviouslyjim wrote:As the washout progresses, am I correct in assuming the level of oxycodone will gradually reduce? And what sort of markers tell you it's time to stop? Is it all symptom-based?
It's hard to say, but hopefully yes. If you're augmented, then once the augmentation and the even-worse withdrawal are over with, your symptoms will be less than they are now. And yes, the only way to tell is by how you feel. I can usually tell if my meds are going to control things or not, so I can gamble and take less some nights, and usually I'm right but not always.

Re: Introducing myself

Posted: Mon Aug 06, 2018 11:48 am
by Wealden1640
Thanks for the info on cannabis oil. I figured something that simple had to be too good to be true. Guess I'll stick with my Pramipexole - at least with that I can sleep a few hours at night.

Re: Introducing myself

Posted: Wed Nov 28, 2018 8:17 am
by obviouslyjim
Hi again. Back after ~4 months. Did a 2-month washout, 'stabilising' at 10-15mg of oxycodone. Still getting symptoms, of course, but how wonderful to be free of all the side effects! Such a treat to still be awake at 10pm! For the past 2 months, have been trying find the 'new norm'. Started back by trying pramipexole by itself, unsuccessfully, not wanting to go above .25mg (since that was my original dose from way back when, which caused augmentation). I'm now taking .125mg pramipexole & 10mg oxycodone SR, and that seems to be working.

At my latest specialist appt, a neurologist, the doc suggested pramipexole ER (Mirapex ER) as an option less likely to cause augmentation. Is this the case? Does anyone have any experience with it? I've searched the forum; found lots on Mirapex but very few references to Mirapex ER.

Re: Introducing myself

Posted: Wed Nov 28, 2018 2:08 pm
by Rustsmith
Glad to see that you are making some progress. Few of us ever achieve real control of our RLS, we just manage it most of the time.

As for Mirapex ER, it doesn't get used much due to the price. It is even more expensive than the Neupro patch or Horizant. Since Neupro also provides dopamine agonist over an extended period, the less expensive option gets used more frequently. As for being less likely to cause augmentation, that was the idea behind the development of the patch. My personal experience was that I augmented on pramipexole after 12 months and it took 15 months to augment on Neupro. My treatment now is a combination of an opioid, gabapentin, pramipexole for PLMS and an edible THC product. That normally provides pretty good control although the last few days have been difficult.