mirapex wean, acupuncture, iron infusion.

[karjbee]

Good Morning from Southern California, It has been quite awhile that I have posted. I do attend the RLS Foundation zoom support groups which have been extremely helpful. I have finally started my journey of a mirapex (DA) wean. I have a Doctor who gets it and is willing to work with me). I have read a lot of experiences on this site, I attended RLS Webinars and did my own research. The common thread through all this information is to do it very slow. There are many suggestions from around the world. So for me I have decided to go a little slower. Currently I have been taking 100mg of mirapex a day, for the last 7 years. Prior to that in 2012 I started taking a miracle drug called Ropinirole, well that augmented after 10yr. I started Mirapex and started to have very mild augmentation. I changed it to every 12 hours. I decided to see if keeping a 24 blood level up might help. So I started .50 (2 tabs) in the morning and .50 (2 tabs) in the evening. It worked. I have not had any restless legs since. (7yrs) Now it's recommended to come off it completely. So before augmentation comes I decided to do it. I had an iron infusion (ferritin 12) oral iron for 3 months (ferritin 30). (New Doctor) infusion was given (ferritin 900) now (ferritin is (168) .

Now let me preface this by saying this is my process, I do not have any expertise or qualifications in anything, except I was a oncology and then hospice nurse for 45 years. Now I am retired. I decided to wean 1/4 pill every 3 weeks keeping it even morning and night. (the pills are scored and very easy to snap apart with my fingers. The pill cutter tends to crumble it a bit). I am 4 weeks in so I am taking 1 pill and 3/4 pill morning and night. I know it's too early to tell, but I am hoping I won't have to take anything if I can sneak it out of system slow enough. But I am prepared to take the suggestions to finish the wean if I have symptoms.

Now my question is, has anyone had any experience with acupuncture helping RLS symptoms? I hurt my back and acupuncture was prescribed for the pain. I wanted to know if acupuncture could trigger RLS. Well it turns out according to some research I found it's just the opposite .Has anybody tried it for restless legs and what was the outcome?

frontiersin.org/journals/ps...

STUDY PROTOCOL articleFront.

Psychiatry , 23 December 2024

Sec. Sleep Disorders

Volume 15 - 2024 | doi.org/10.3389/fpsyt.2024....

Acupuncture treatment of restless legs syndrome: a randomized clinical controlled study protocol based on PET-CT and fMRI

Thank you Karen

[SueJohnson]

You are taking twice the maximum dose of mirapex. Who prescribed that?

Weaning by a 1/4 pill which would be .125 mg is too fast. The usual recommendation is reduce by HALF of a .125 pill every 2 weeks.

You can get an inexpensive jewelry scale that measures down to .01 gram from Amazon (around $11 ) and shave off a bit of the tablet and measure it.

[karjbee in reply to SueJohnson]

My apologies on calculations not my strong suit. I am taking O.25mg 2 tabs every 12 hours! So I am taking a quarter of a 0.25mg tab to wean. 😖 had me pretty worried there for a minute. When weaning will there always be symptoms no matter how slow it is tapered.

[Joolsg in reply to karjbee]

Yes, sadly.

[SueJohnson in reply to karjbee]

Yes but a lot less if you go slowly

[SueJohnson]

To continue from above: Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

On the gabapentin or pregabalin, the beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks and your withdrawal symptoms have settled. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.

Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. 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. (You don't need to divide the doses on pregabalin)

Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin)."

If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium or antacids don't take it within 2 hours for the same reason (not sure about pregabalin).

[karjbee in reply to SueJohnson]

Oh my gosh. Thank you Sue. That was prescribed 2 doctors ago at Kaiser.

[karjbee]

My apologies on calculations not my strong suit. I am taking O.25mg 2 tabs every 12 hours! So I am taking a quarter of a 0.25mg tab to wean. 😖 had me pretty worried there for a minute. When weaning will there always be symptoms no matter how slow it is tapered.

[YoghurtLover2]

Thanks for posting Karen .. now I know what ferritin infusion to ask for 🙏

[Joolsg]

Here's the withdrawal schedule from RLS-UK, which runs this forum. Scroll down to 'withdrawal schedule'.

rls-uk.org/useful-resources

You may need a low dose opioid to settle the increased, severe RLS at each dose reduction.

And acupuncture doesn't help RLS.

[SEBARTA]

I had a back injury and was scheduled to do acupuncture for treatment. I found an article on the Internet on using acupuncture for RLS and emailed it to the fellow doing acupuncture as he was quite interested in learning more about using acupuncture to treat the symptoms of RLS. To make a long story short, regrettably it did not help me and it made it a bit worse although after a couple weeks the symptoms returned to the previously moderate level. I have been managing my symptoms for years now with a B complex, 150 mgs of pycnoginol, 100mgs of L. Planetarium, 250 mhs of Ashwahhands KSM with dinner.. The pycnoginol and the B complex are the most important and I would start with that after you have weaned off of Mirapex. Occasionally I wake up around 3 AM but a simple massage of my arms for a minute or two will usually allow me to return to sleep . My father was on Mirapex and suffered from augmentation. I chose not to go that route and so far so good. Good luck!

[karjbee in reply to SEBARTA]

Thankyou. Yes I am hoping the normal ferritin level will be enough and going slowly on the wean. I also take magnesium malate and B6. Vit D with Ks. Vit E and Calcium. Vit C. I don’t take the multivitamin because of the stronger concentrations. I am curious about the pycoginol and planetarium. The Ashwa made me so sick. Thank you for the suggestion.

[707twitcher]

I'm sure you have researched opioids as well. My experience was that taking buprenorphine greatly aided weaning off Mirapex. Like many here, I continue to take it, because my baseline RLS is so much worse post-DAs than it was before augmentation. I have been off DAs for 16 months, and still can't get relief from just gabapentin or pregabalin. I'm resigned to taking buprenorphine indefinitely. While I understand wanting to avoid opioids if possible, I would suggest preparing yourself for the possibility that you may need them.