I've had RLS since childhood and didn't know that I had the malady. Of recent years, it has gotten worse and I was placed on 1mg Pramipexole which worked almost adequately.
After some months/years, I returned to see my Primary Care Doctor and they said it was alright if I took 1/2 tablet more of the Pamipexole which made it 1.5 mg. That worked for a few months and then I had a partial knee replacement.
I kicked violently one night and displaced the implant and now they are going to do a total knee replacement.
I sit on the sofa every night and my legs get to moving and it is very uncomfortable and the other night it was miserable and I failed to obtain nearly any sleep so I made an appointment with my primary Doctor and he implied that my problem was beyond his scope of duties and he ended up telling me to take .5 mg of Pramipexole AND 300 mg of Gabapentin. I followed his instructions and took the medication about one-half hour before bed and noticed that I became dizzy so I went to bed. I slept nearly all night with any symptoms of RLS. But the next day researched mixing the medications and founds that it was not to be done.
The next night (refering to the sofa above) when I ntoed that I began to have RLS symptoms, I got up from the sofa and walked aroudn a bit and that seemed to reolve the symptoms. I took Pramipexole 1mg and slept the entire night w/o having an RLS episode.
So, I think being somewhat active when symptoms occur, I find that it helps but also a doctor that knows his business. Sometimes, they dont know their limitations and fail to refer a patient to a specialist as they should and a patient almost has to insist that a referral is in order.
In the meantime, I'm awaiting the Pre-Op for the full knee transplant and a Neurology visit to make sure I'm on the proper regimen of medication for RLS.
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Tiredkicker
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The advice we gave you after your first post 8 days ago still applies.You have to get off the Pramipexole very slowly. If you have a total knee replacement before you're completely off that very high dose, you will end up having further surgery.
So please look at the replies to your previous post.
You should also consider legal action against the doctors that put you on 3 times the max. FDA dose.
Of course you can take both pramipexole and gabapentin at the same time. See the Mayo Algorithm on RLS. Being dizzy can be a side effect of gabapentin but as I told you before the side effects usually wear off or will usually lessen.
Follow Joolsg's advice and what I gave you before.
I think your doing the right thing. In USA they are using opiats. Not for me. Its a constant battle that's for sure. Please keep intouch and good luck.
I have taken Pramipexole and Gabapentin for years with almost complete success. I take Pramipexole 0.5 in the morning and at bedtime.. I can take 0.5 in the evening PRN and I usually know if I’m going to need it. I also know that I can take an additional 0.5 at bedtime if I’m having a bad night. I take Gabapentin 600 mg every night and I can take an additional 300 or 600 if I’m having a bad night…. I have never thought I had any troubles with mixing the medicine… only abruptly stopping Gabapentin. Good luck to you… it’s a terrible thing to have. I’ve had it since I was 14…
If you are taking .5 pramipexole in the morning and also at bedtime and sometimes more than that, you are taking at least twice the maximum dose and also needing it in the morning means you are suffering from augmentation.
The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.
This means you need to come off it as it will only get worse.
To come off pramipexole, reduce by half of a .125 tablet every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. 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.
Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations.
The beginning dose is usually 300 mg gabapentin. You are already on more than that. Normally you would start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After you are off pramipexole for several weeks 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.
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 . According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."
Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done.You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.
If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.
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...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, 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, C, 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.
I’m completely confident in my physician. I do have iron deficiency anemia… requiring iron transfusions over time…I also have intestinal metaplasia and autoimmune atrophic gastritis. Not only can I not keep my iron up to a good level for (me) but I don’t absorb iron and I’m b12 deficient. The highlight of my ferritin is sometimes 11-15. If I didn’t have the mirapex I might not make it. On a general day I take 0.5 in the am and 0.5 at bedtime. Gabapentin I take 600 as my nighttime dose. I have severe RLS, it will make you crazy. Psychotic, and other things…When you have it and you know what works and definitely what doesn’t… I have a neurologist, cardiologist, endocrinologist, rheumatologist, pulmonologist, and I’ve never had issue with my dosage. Also, RLS can be exacerbated by gut symptoms. I had SIBO. Small intestine bowel overgrowth. So that’s something that I never see mentioned. I do appreciate your input Sue.
I'm sorry but your doctor is wrong to give you a DA and TWICE the maximum dose. And your RLS is still not completely controlled or you wouldn't have bad nights. You don't need to suffer. Have you read the Mayo Algorithm? He may be great for your other health problems but he is not the right doctor for your RLS.
Sue, I've seen a Neurologist and she placed me on Pregabalin 25mg capsules twice a day and Carbidopa 100 mg tablet 3 times per day. But...she admitted when I asked her if she was experimenting and she said "yes." She left it up to me as to how many times per day I take the Carbidopa and I am taking i/2 tablet at midday and the capsule of Pregabalin at bedtime with the other 1/2 tablet of Carbidopa. She said I could take 1/2 tablet of Mirapex but I skipped that and so far so good.
I could take the tablets three times per day but so far I haven't need that and I'm getting along quite well I feel.
Addendum: She is having my Primary CAre MD check my iron levels.
Carbidopa acts like a dopamine agonist (DA) - like pramipexole. It is no longer used to treat RLS. It quickly leads to augmentation. You definitely DO NOT want to take more than what you are now taking - 1/2 a tablet twice a day. And NO don't take the Mirapex.
You need to come off any DAs or drugs that act like a DA if you ever want to have your RLS controlled for good.
I would skip the idea of taking any carbidopa and go back on Mirapex and follow the advice that was given to you in your post - "RLS IS Most Troublesome."
Sue please see my addendum above. I am going to omit the Carbidiopa and only take the Pregabalin 25mg bid and see what happens. Tonight will be a test run. I'll post what happens.
Yes, the Doctor said that Carbidopa was also used for Parkinson's DZ but I took your advise and made it through the night w/o RLS symptoms. I took 1/2 mg of Mirapex and the Pregabalin I am beginning to think that perhaps my RLS is not as bad as I thought.
In my original post, I kicked and dislodged the partial knee replacement. And I do dream on occasion and perhaps that was why I kicked so hard that particular night. But I do have RLS, it's in the family and some of my grandchildren have the problem as well.
The wife has been studying supplements for several years and it came to her that I might try Valarian Root capsules. In the evenings sitting on the sofa, I developed "crazy legs" and she thought I might try the Valarian Root. I did and oddly enough, the RLS ceased and I now sleep all night but I am taking the medication regimen the Doctor prescribed.
Due to the addictive potential of Carbidopa and Pregabalin, I ceased those medications and reduced the Mirapex to ,5 mg or 1/2 tablet per night and am sleeping as well as I ever did. the thing some people don't realize is that a physician doesn't know everything and they are learning as they perform their duties from patient to patient.
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Total Knee Replacement and RLS
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My story and my cure.
Is it withdrawal or augmentation or just ineffective?
