Please help! Going through pramipexole augmentation trying to come off and start gabepentin. Having trouble --.Out of control

[Aujamw]

was on 3mg of pramipexole neurologist suggested reducing by .5 mg every 3 days and then starting gabepentin. I believe that schedule was too quick and I am not having much success by starting Gabepentin and my symptoms are all times of the day and totally out of control. My neurologist is not able to give me recommendations on what to do. I feel like it is up to me to figure this out! Will it ever get better?

[SueJohnson]

Yes that is way too fast. Go back to the last time your symptoms were pretty much under control. That might mean going back to taking 3 mg of pramipexole and stay on that dose for several days. To come off pramipexole, reduce by .125 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. 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. But in the long run, you will be glad you came off it. Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice. Dopamine agonists like pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin. Start it 3 weeks before you are off ropinirole although it 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. 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 of gabapentin 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 daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin. 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...

[Aujamw in reply to SueJohnson]

this information is EXTREMELY helpful. My neurologist seemed to be quite vague at advising me how much Gabepentin to take I seemed to do ok with reducing to .5mg pramipexole and adding Gabepentin 100 mg every few days but then he recommended coming off the pramipexole and increasing gabepentin perhaps taking 100 mg at 3 pm and then 300 at 8pm. But suggested higher doses were probably needed without giving me how to increase. My symptoms have started all times of the day and I feel like I don't know what to do at all. Things seem out of control. Even with severe symptoms at midday. Yesterday I took 300 mg at 3 pm and then another 300 at 9 pm and symptoms started shortly after. I was in agony until 2 am. I finally took a hydrocdone at 1 am and finally got to sleep at 2 am. I am thinking I need to stay on the .5mg of pramipexole but didn't know if the symptoms are from thr pramipexole withdrawal or the Gabepentjn not at adequate dose yet.

[SueJohnson in reply to Aujamw]

The symptoms are from the pramipexole withdrawal.

[SueJohnson]

Meanwhile, some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, 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, 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, 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, using a standing desk, listening to music, meditation and yoga.

[SueJohnson]

Many medicines and OTC supplements make RLS worse. If you list them here I can tell you if this is so and may be able to provide a safe substitute.

[Heavyd65]

Maybe it’s time to see another doctor. Everyone is different so it’s trail an error. I can tell you what works for me. I’ve taken the pramiprexel of and on for years and it takes several hours to work and it’s never been that effective. Started gabapentin over three weeks ago and I noticed I’ve been tired all day which is a side effect of gabapentin….one of many. Decided it’s not for me. I take oxycodone once in the morning and at bedtime and that works very good for pain and my RLS. Also I’ve had great success taking Kratom. I take six capsules of the Red Mengda. It stops RLS symptoms in twenty minutes. So what works for me…..moderate dose of oxycodone…Kratom…and any form of opiate. My pharmacist said even Suboxen ( moot sure of the spelling). I’ve read all all types of treatments…some very complicated. Good luck…stay away from caffeine and alcohol.

[TeddiJ]

Consider ordering red vein kratom powder until you figure out your meds. As Heavy says, it stops rls within minutes so you can sleep. It may not be an ideal long term solution, but it will get you off the PRAM much more easily (unless you can find a doctor to prescribe an opioid to get you through). Many of us have had to use an opioid or kratom to get off the DA's. Yes, it will get better, especially since you found this forum.

[Hidden]

Good evening Aujamw. I just joined this forum and looked for your comment that I had read earlier so that I might offer some insights. I separately shared my recent, similar Hellish experience following titration from pramipexole concurrent with the administration of a newly prescribed pregabalin.

The fault was not the pregabalin; rather, it was the hasty titration from the dopamine agonist. I experienced DAWS (Dopamine Agonist Withdrawal Syndrome). My RLS discomfort/pain skyrocketed; and other medications (tramadol; hydrocodone) were rendered ineffective. In the months since then, DAWS subsided and tramadol again offers some relief.

I "fired" my "sleep expert" neurologist and instead now am the patient of a general practice physician knowledgeable of the Mayo Clinic Updated RLS Algorithm. Pending my appointment with a new "sleep expert" neurologist, we are giving pregabalin another go as I now titrate off tramadol due to limited remaining supply. Preliminary results are favorable.

Be well.

[manifesting_healing]

Have you had your iron checked? Iron infusions helped me some. Gabapentin never helped me. I just had to suffer through it. But now I am on 1 mg pramipexol 2xs a day. Thank God it's working. I take something called cell membrane complex ( supplent) 2xs a day too. This has really helped.