Tapering off pramexole

[anonymous1500]

I've been reading this forum for a couple of years and it's really helpful. I'm in the states and I know this is a UK forum so I'm using American measurements.

A little background.

Thirteen years ago my husband complained I was treating the bed like a trampoline. I was sleeping through all of it, except the one time I kicked myself in the leg hard enough I woke up. Anyway, did a little research and went to the family doctor. Not my regular doctor, another one in the practice. Got requip for Periodic Limb Movement Disorder. I had some very mild RLS during the day, but that wasn't a problem. The requip didn't work. Well, it did stop the symptoms but I had really bad heart palpitations and called the doctor after three nights and he said to stop it so I did. We went on vacation starting the next day and when I came back got in with my regular doctor the next day. He must have had a cancellation, he books weeks in advance. So he put me on . 125 mg Mirapex and everything was OK. If I was an hour or so late taking it I had some heart palpitations and jerking of legs or something weird so I just had to remember to take it on time or very close. Maybe a year or so ago I went to bed at my regular time and wasn't sleepy at all. Read some, tuned out the light and just forced myself to go to sleep. Maybe 30 minutes to an hour later I woke up with my whole body just freaking out. I don't really remember what all, I but I felt terrible. It would have been about two hours past my regular time to take it. I wondered if I'd forgotten to take my pill. I laid there and went through my evening and realized I'd forgotten to take any of my pills that night. Oops. Took them all and all was good.

The past year I've started having augmentation of the RLS but my PLMD has been just fine. My husband hasn't complained once and I haven't noticed anything. I've never had to go up on the dose, it's always been the same tiny .125 mg. But I need to get off of it because of the RLS augmentation during the day and I want to see what my body would do on it's own. One neurologist (who I had seen before) said he didn't know why I wanted to get off since "it's cheap and it works" but he did send me for blood work. It all came back "normal" and when his office called I said I thought the ferritin was low for RLS/PLMD (and it was) and he said to take iron. The problem is I had this nasty cough I was dealing with (not covid!) that turned out to be airway reflux and I have to be on a low-acid diet. I put the leg stuff on the back burner while I dealt with one specialist after another getting the reflux diagnosed and under control. Then I went to another neurologist. He said I was just having regular symptoms, gave me a prescription for gabapentin and said to just stop the Mirapex. Like that's going to work. He wasn't at all interested.

Back to my regular doctor for six-month refills on stuff. He was more than happy to work with me on getting off of it but he doesn't know anything about it. And he's a well-seasoned doctor, but he's general practice and this just isn't his thing.

I found out the RSL Foundation exists and patients there had recommended two doctors near me. One 10 minutes away that doesn't take my insurance (American healthcare, insurance dictates everything) and one an hour away that does. So I went to see him and he was great. He ordered blood tests. When I told him I couldn't do oral iron because of the reflux he referred me to a hemotologist (once I found one who takes my insurance) for iron infusions. Unfortunately that guy is backed up until mid-May so I have to wait, but I'm on the cancellation list in case something comes up earlier. He also gave me a script for 300 mg of gabapentin and I started that two weeks ago. He said to cut the mirapex in half but I told him why I can't do that (read next paragraph) and he suggested scratching a little off every day with a razor blade.

Why I can't cut the pill in half, even though it's a teeny tiny dose. So two years ago I got new insurance and they were charging kind of a lot for the mirapex (generic) at my regular pharmacy (CVS0 but you could use a coupon program at the grocery store pharmacy for less (about what I paid on the old insurance) so I did that. I picked it up and that evening when I went to take it realized it was a generic from a different manufacturer. I didn't think anything of it and took it. Well, the FDA allows for a little difference (plus or minus) in the absorption rate as compared to the name brand. Well, about an after taking it I was having mild withdrawal (a little lightheadedness/heart palpitations) and realized not as much medicine was soaking into my system as my regular generic. The next day my husband said I should give it one more try. Why did I listen? I did and I had the same symptoms but definitely milder. Next morning I went back to the grocery store pharmacy and they said they can't special order anything so I'd have to get a new script from the doctor and go back to CVS and start again. So I did. CVS couldn't fill it to the next day so I took that same pill a third night and my body had totally adjusted. Everything was fine. But I still wanted back on the brand I was comfortable with. So I picked up my "regular" generic from CVS and took it that night and could tell it was stronger. Slept like a log that night and had some sleepy side effects the next morning. Then after that everything was fine. That was two years ago.

So back to the present. Well, I wasn't sure about just scraping some off every day. I needed something more precise and it's just a tiny pill. So I went to the compounding pharmacy and talked to the pharmacist about having it made into a liquid and going down by 10 percent every 7-10 days (at first, it'll have be a longer taper toward the end). So I called my regular doctor's office, naturally he's booked up til the end of the month so I saw a nurse practitioner and had a good discussion with her. She called the compounding pharmacy and discussed it with the pharmacist and put in the prescription. I picked that up yesterday.

Then I remembered what happened when I was on a different "brand" of generica and what happened with lower absorption of the same strength. I asked what they used to make the compound and he told me which manufacturer it was. The one I got from the grocery store that gave me the mild problems. So I got a liquid and one milliliter is the full .125 strength. To taper I'm supposed to start with .9 mil until my body adjusts (hopefully no more than 7-10 days), down to .8 and so on. But since I know this absorbs at a little lower rate than I'm used to I decided to start with the pills I have, I had just put the pill bottle back in the drawer, so I still have it. So I took the full dose of the "other" manufacturer and I really felt it. Mild dizziness, heart palpitations, didn't sleep too well. Hopefully I'll adjust in a couple of days and begin to start the actual taper.

There is someone in this group whose name I can't remember who has all kinds of helpful information. He talks about waiting until your body "settles" before going down to the next taper. What is considered settled? How long should I wait from the first good night on the taper before going down one?

Any advice or information would be greatly appreciated. I know this is long, but it's been a long ordeal. I'm really scared of what's coming up but it's got to be done. It's a really low dose but it's been a really low dose for a really long time.

[SueJohnson]

That was probably me. What I meant about settled is that when you first make a reduction your symptoms will be worse, but they will settle down so they are not so bad that you can't live with it. Wait a day or two to make sure it is not getting even better.

As you get near the end you may need a low dose opioid temporarily to help out.

On the gabapentin t won't be fully effective until you are off it for several weeks. After that increase it by 100 mg 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. 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" If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin ( as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason .

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[SueJohnson in reply to SueJohnson]

P.S. What your body will do on its own is go right back to the symptoms you had before you did anything, unless the iron infusion works. What was your ferritin?

[anonymous1500 in reply to SueJohnson]

Yes, believe it was you. It was 13 years ago that I was first prescribed the mirapex. I know a lot of things have changed since then. It wasn't for rls, as that was very mild and not really an issue, more annoying than anything else. It was PLMD that was really the problem. But either, way. My ferritin is 49 so definitely needs to come up. Hopefully the infusion will help once I get it.

[Wanttorelax]

I was on requip many years ago. About 16 years ago I had a bad reaction due to the requip and ended up in the ER. They said it was a long term effect. anyway my potassium was low as well as some other elements. I went off requip and tried several other medications which did not agree with me. Mostly weird out of the body feelings. I went without for a while and just walked around and stretched a lot at night. Left my kind of high profile job and went for something less stressful. I do not remember when I started back on requip. I am on vacation and do not have my records. Anyway within the last three years symptoms started getting worse. I had been taking .5 requip just at bedtime. Then it was 2, .5 requip. Then 1. requip at 6 pm and 10 pm. I started having symptoms during the day. I could not ride long in a car. I had some days I did feel well for an inflammation reason and could not rest during the day. Very frustrating. I asked my primary care physician for a prescription so I could take 1. three times a day and she prescribed one 3. one. I had to cut them in half. Then I ran across someone that said I should have vein study done. After much to do, I did and my veins were fine. I did go to a larger town to get that done and thankfully, he referred me to a sleep study doctor that specializes in RLS. I knew my primary care person had no idea and she would just continue to give me all the requip I asked for. Anyway, the sleep study went well, I do have issues there also, but that is another problem to work on. The RLS doctor said I needed to get off requip because of augmentation. They had me start with 1, 1 mg requip and 1, 100 mg gabapentin at 6 pm and 10 pm. After about a month I went to .5 requip and 2, 100 gabapentin at the same times. for our vacation, he suggested .5 rquip for the car ride. It is going fairly well. I still have times I have to walk a lot or work on a project until the symtoms subside. The exciting part is that I meet the requirements for the new Tomac device and he submitted papers to my insurance. It has been 14 days. He said in a study that he was part of, that he had patients that were off medication and only using the device. I have hope for that and if not, at least I feel I have someone on my side to help getting off the requip. It is a difficult road. Good Luck to all.

[SueJohnson in reply to Wanttorelax]

That is great! Who is your doctor? Will be very interested if the insurance covers it. Do let us know.

[anonymous1500 in reply to Wanttorelax]

Oooh. What is the Tomac device?

[Wanttorelax in reply to anonymous1500]

NTX100 Tonic Motor Activation (TOMAC) System. I understand it is prescription only. Without insurance $7000.

[tagaxel]

First of all, you did the right thing by going to a compounding pharmacist however you must go infinitely more slowly than you did. It’s called a micro taper. Here’s what you should ask for:

A compounded liquid of:

0.125mg/15mL

Dispense: #450mL (ask for #500mL so you have extra in case of spills)

Rate: Remove 0.1mL per day. This translates to a loss of 0.00083333mg per day or 0.025mg per month (10% from 0.25mg lost over 30 days).

As far as the body “settling”, no one knows how long it takes for the dopamine receptors to up regulate. If I were you I would hold that 0.125 mg for three months and then begin the micro taper

Total time it would take (without holds): 5 months (it's possible you could go faster, like 0.2mL per day, which would take 2.5 months.