From pramipexole and buprenorphine to what?

[ChickenTwisty]

Hello,

I am looking for any advice on withdrawing in my unique circumstance, i.e. how to drop more pramipexole and what to take when buprenorphine is withdrawn in two months time.

10 years RLS with massive augmentation, been at the point of wanting to top myself prior to trialing Targin (oxycodone with added poo-aid) about 6 months ago with mild success. Switched to buprenorphine a month ago and results to date much more promising. The clock is ticking though and I can only stay on it for two more months (currently going through a pain management clinic, but they have indicated they will drop me as they are not funded as RLS doesn't target the pain receptors).

Over the last 18 month I have gone from 2mg of pramipexole down to .5mg, then oxy got me to around .250mg (cut 1mg into quarter). As of today GP said can double my 5mg buprenorphine patch. So on that basis, prior to reading this forum I was going to try dropping my pramipexole all together tomorrow night (allowing my increased dose to leak into my system), but it seems that (even now) I am on a larger dose than most people come off from. Each of my GP, sleep specialist (respiratory) and pain specialist have said it is trial and error and I have driven my drop from 2mg to .250mg in .5 to .250mg. Am I reading it right that .250mg is too big a final drop?

I tried to drop the prami last week, I managed a week but I needed sleep and my mood was plummeting. I still have some small amounts of gabapentin, (20 x 400mg), oxy (22 x 10m mg), clonazepam (10 x .5mg) and maybe some temazepam and Panadeine forte left over from previous trials ... any suggestions on easiest path out of here? I am keen to cease the prami b4 my buprenorphine runs out and want to do asap because if augmentation doesn't wind back that will be it for me.

If my symptoms do wind back then I am thinking gabbies will be the med I go back to (was on 1600mg combined with 1mg prami, was still measuring very severe on the RLS scale but it had some effect).

So in short -

Is ceasing my current dose of .250mg in one hit to big?

Comorbid conditions and medications I can remember I have tried are in my profile, (opioids are out for ongoing treatment). What should I aim for when I am off pramipexole and buprenorphine?

[Joolsg]

Pramipexole withdrawal is hell on earth.It's best to drop half a .125mg tablet every 2 weeks.

I found nothing helped the withdrawal symptoms except cannabis. It was the only thing to give me 30 mins rest after 4 days and nights of zero sleep.

Clearly your team fail to understand how hellish withdrawal is.

You need to push for the Buprenorphine to be continued once you're off Pramipexole.

Once you do get off Pramipexole, your RLS will be much less intense and will only affect you in the evenings and night.

However, you are likely to need meds to replace the Pramipexole and Buprenorphine is now being prescribed more often for refractory RLS after augmentation.

Show your team the Mayo algorithm and Dr. Winkelman's opioid study.

Also ensure serum iron is above 60 and serum ferritin is above 100, preferably 250 as that can alleviate some withdrawal symptoms and helps with RLS.

Take a look at Shumbah's posts. She's in Australia and is on Buprenorphine.

massgeneral.org/rls-registr....

mayoclinicproceedings.org/a...

[ChickenTwisty in reply to Joolsg]

Thankyou, I had come across some of that in the forums. The data study is new, intersting and I think will be of interest to the pain clinic

I have heamochromotosis and ferritin was upto 1600 before treatment and now they are not willing to let me stay above 120, but 100 to 120 is the aim.

It seems you think I could need something else post prami, whilst suspecting you are right I am rather hoping you are not! If my augmentation can reverse back to where it was 10 years ago, (a few nights every month or so), I could live with that and wish I was never given pramipexole!

Thanks so much for your reply.

[Joolsg in reply to ChickenTwisty]

I really hope that happens. However, the top experts in the USA now believe Pramipexole and Ropinirole ( & other DAs) permanently damage our dopamine receptors so we will then always need meds.I'm hoping you are not one of them.

Haemachromatosis clearly means you shouldn't take any extra iron.

Good luck.

[ChickenTwisty in reply to Joolsg]

You are spot on about buprenorphine winding back intensity massively, at least to evening. Now 4 hours past normal (prami induced) sleep time, so have done my best to cut my pill in 8ths to get to 125mg as suggested, now time for second bath for the night (and many extra snacks), but shortly after that i'm hoping an 8th (with the bupre) is still enough to put me in a coma

[SueJohnson]

1st off don't take clonazepam and temazepam together as they are both benzodiazepines. I also wouldn't take your 3 different opioids together but save them for when your buprenorphine runs out. Congratulations on getting down to .25 mg pramipexole. Normally reducing by .25 mg is not too big a drop, but the last reduction as you found out is the worst, so you might try reducing by half that as Joolsg suggested. You should start the gabapentin now as it takes 3 weeks to kick in and unfortunately won't help much until you are off pramipexole for several weeks. Take just one 400 mg 1 to 2 hours before bedtime. Ask your doctor for a prescription for 100 mg tablets so once you are off pramipexole for a few weeks you can increase by 100 mg every 2 days until you find a dose that works for you. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." It can be increased up to a maximum of 3600 mg. If you reach 1800 mg you should switch to pregabalin (divide your dose by 6 to get the correct dose of pregabalin). As Joolsg said, it may be that pramipexole has permanently damaged your dopamine receptors, but there is no harm in trying gabapenpin. If it doesn't work, come off it slowly.

[ChickenTwisty in reply to SueJohnson]

Thanks so much, very comprehensive. Interesting what you say about gabbies whilst still taking prami, suggests some hope this time because last time I got up to 1600 last time and quit because of nil effect.

Today I looked at the 2 year longitudinal rls data and looked at every variation of opioid of the type listed in the approved meds (100 ish) on Australia regulator site and the ONLY one "indicated" for RLS in Australia is Targin, which I was on 10mg twice daily for 5 months with mild effect , but being only available will push for Targin again as a opioid post buprenorphine iaw with jools suggestion, and gabbies as you suggest if that fails.

Thanks again to you both.

PS ... interestingly whilst Targin only approved opioid for RLS in Australia, the allowable dose is many time the maximum normal effective range per the aforementioned study.

[Joolsg in reply to ChickenTwisty]

Targinact, Buprenorphine and gabapentin won't help much while you're still on Pramipexole. That stuff is toxic. When augmentation hits, your D1 dopamine receptors are completely over stimulated and screaming for a hit of the Pramipexole. That's what drives augmentation. If you're still on Pramipexole, those screaming D1 receptors will not quieten down until 3 weeks after the last dose of prami.Inevitably there will be weeks of hellish withdrawal when you are off the Prami but the new meds aren't helping because your D1 receptors are still aggravated.

With each passing day after the last dose, your RLS should be a little better than the day before.

It's so tempting to give in and take more Pramipexole at this stage but you will just prolong your suffering.

It's hell but 3 to 4 weeks after your ladt dose, the intensity of the RLS settles, it reverts to what it was before you started Pramipexole and at that stage you will find the new meds fully kick in.

You should be able to manage with one med. Either pregabalin. Targinact or Buprenorphine.

As Targinact is licensed and available, try it again once you're off Pramipexole if they refuse Buprenorphine.

Read all you can about augmentation and withdrawal and DAWS. The more research papers you read, the better you can argue your case with the neurologists.

I guarantee they will not have bothered to research or read up on RLS.

[TeddiJ in reply to ChickenTwisty]

ChickenTwisty, I got off the Pramipexole/Ropinirole train after many years. I did not withdraw slowly but just went for it over 2-3 weeks or so. A new opioid prescription (methadone) made that pretty easy to do, although it has its own side effects.

I had thought I could use it short term and then resort to natural RLS treatments. Thus far, that is not true and I am still on the Methadone. I never liked Gaba and it gave me some odd eye pains/issues. It also just didn't seem to work; perhaps if I had stuck with it for months, it may have. Best of luck to you!

[ChickenTwisty in reply to TeddiJ]

Thanks Teddi. Some here report that whilst withdrawing off of pramipexole that the opioid did not relieve symptoms until some time after pramipexole was fully ceased. Was that your experience?

[TeddiJ in reply to ChickenTwisty]

Hi. No, not at all. I think you may have misread; posters always say that it's the Gaba that doesn't work for a while. Especially if you have augmented on DA's.

The opioids work immediately and that is why they are touted in the latest research and are so helpful to us.

It is what I was trying to convey to you above-I got off that terrible and long DA train so easily but only because I HAD the opioid. The transition was immediate! I did not drag out tapering down on the Pram and only took both the DA and the meth for a short time.

There are new side effects I had to deal with, of course.

Like you, I was told I could only have the Methadone for a short time. (I have posted on that, if you want to check.)

When I did run out of Methadone, I had the worst night of my life of withdrawal. Pure hell. I did not think that could happen after only 2 months and with such a low dose. I was able to get a few more at the pharmacy that next day...I was like a crazy person in my jammies and gobbled 1/2 a pill before leaving the store.

After a lot of angst and many calls, I finally found a new doctor who continued prescribing the Methadone.

It seems it can take months or more for our bodies to readjust after being on the DA's for years. So I am giving it time and using the tried and true supplements again-hoping for better results now that I am free of DA's. I had an iron infusion last April, before I started on the Methadone in August.

I am also taking the supplement Berberine on the advice of one poster, as it may help my receptors to get back on track.

Don't assume you can just quit the opioid with no problems, as I did. I would hate for you to go through a night like that! It made regular RLS seem like a cakewalk.

I really hope you can get a new doctor who will continue prescribing the Bup.

Be careful and best of luck.

[ChickenTwisty in reply to TeddiJ]

Thanks so much for all that information. I certainly hope you are on the money. If you are then it suggests I should be asking for more Buprenorphine (though would need a few more days to make that call) and I think I am high dose on 10mg patch (without actually converting it myself). My experience so far is closer to Jools "Targinact, Buprenorphine and gabapentin won't help much while you're still on Pramipexole. ... It's hell but 3 to 4 weeks after your last dose, the intensity of the RLS settles" (above), though consistent with her experience my symptom onset has shifted from waking to evening, hmmm, so why not all the way like you? Either tonight or tomorrow night will be without any Sifrol at all so time will tell!

I, like you, have had no long term trouble dropping all sorts including opioids, I was grilled in court for two days non-stop after coming off Pristiq (because I was too busy to fill the prescription) and was fuzzy as a caterpillar and mostly a blur and that is my worst experience, but even then I do remember some excellent points I scored against the Barrister who immediately tried to intimidate me with an introduction on how he had ran a particular high profile politicians case in the high court.

Here is hoping I get closer to your experience than Jools's experience

[TeddiJ in reply to ChickenTwisty]

You are welcome! I see what you mean; you did not misread what Jools said, obviously. But, opioids are used in the latest studies and people seem to have little trouble with the transition off the DA's.There is a video online of Dr. Buchfuhrer discussing this, using slides, and you can also google Johns Hopkins: opioids and RLS.

Also, very important: I emailed Dr. Buchfuhrer directly and asked him: what do I take after getting off the DA's fully, using Methadone? He said that an opioid is most likely the only thing that will work. He did not suggest any other drugs. You could try emailing him, as well. His email has been posted here somewhere and it is also on RLS.org.

Yes, check the dosages, for sure. I did have to take extra Methadone in the nights soon after stopping the Pram. but was able to get that back down to a normal dose quickly.

Perhaps my withdrawal situation is not normal after only 2 months. I am glad you already have an idea how you will react!

I would like to get to natural solutions and I hope I can, one of these days. But, I am unsure about that now.