RLS & Pramipexole

[Maymount]

I'm an 81 year old active woman. I have suffered with RLS for over 10 years. Prescribed .088mg Pramipexole by my GP n just told to increase when I complain! I went to 5 at night but am weaning off myself with the help of 50mg Tramadol around 6pm. Down to alternating 2 or 3 at night slowly. Had bloods done recently. My serum ferritin was 148ng/mL. My TSAT was high at 34.6% . Should be under 33%. MCV also high at 98.1fL. Should be under 96. Magnesium n B12 were OK. My question is what do I do when I'm almost off Prami? I will need some thing or increase tramadol? Thanks for all your help. You are a lifesaver to all.Eithne(Ireland)

[SueJohnson]

First off your TSAT is not high. As long as it is under 45%, it is fine.

That's great that you are successfully coming off pramipexole. I would not alternate nights though. My usual advice is as follows: To come off pramipexole, reduce by .half of a .088 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 and you are using tramadol for that especially as you near the end. But in the long run, you will be glad you came off it.

Dopamine agonists like ropinirole and pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin.)] 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 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 split the doses with 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. 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 don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

Tramadol works great but it is the only opioid that can cause augmentation so I would slowly wean off it after you use it to get off pramipexole.

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, 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, 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.

[Maymount in reply to SueJohnson]

Thanks Sue. Is my ferritin OK? Eithne

[SueJohnson in reply to Maymount]

Yes - anything over 100 is what we want for RLS.

[Maymount in reply to SueJohnson]

Thanks. Eithne

[Stuz007 in reply to SueJohnson]

Do you know if Montilucast makes RLS worse please ? As a note if I take Gabapentin with Pramiexole my RLS seems to get worse. Does this make sense ?

Thanks

[SueJohnson in reply to Stuz007]

Montilucast is OK. No that makes no sense. Gabapentin can cause twitching.

[SueJohnson in reply to Stuz007]

Why are you taking both and how much of each?

[Stuz007 in reply to SueJohnson]

Ive had recent spine surgery and my RLS has gone nuts. I was on 300mg of Gabapentin 3x a day but have discontinued that 2 days ago and have been taking Pramipexole .375mg 3xs a day. The goal to build it up by 1.25 every 4 or so days. Im finding if I have sugar or alcohol in the evening Im up with RLS until 3am. Really struggling with it

[Stuz007 in reply to Stuz007]

I do have an allergy to Salicylates

[Joolsg]

Welcome Eithne,SueJohnson has given you excellent advice.

Once you are down to the last half of the 0.088 pill, you can start pregabalin or gabapentin.

If they don't help after 2 months, you can ask for a low dose opioid. Methadone and Buprenorphine are the most effective as they have a long half life.

I know we have several members from Ireland who have been prescribed opioids for refractory RLS.

[Maymount in reply to Joolsg]

Hi Joolsg! Thanks for your helpful comments. My GP didnt prescribe tramadol as I had it for pain relief on my knee. I also sometimes notice a glass of wine can trigger it. Does it mean alcahol is a no no? I like a glass for sure! Love the forum. Some fantastic advice in it. Thanks. Eithne

[DesertOasis in reply to Maymount]

Maymount, are you taking a calcium channel blocker or HRT or an SSRI or melatonin? These substances can make the symptoms of RLS worse than they have to be.

[Maymount in reply to DesertOasis]

I take Calcichew-D3 Forte twice a day. Am n pm.Eithne

[DesertOasis in reply to Maymount]

What prescription drugs do you take - ie heart medications or hormone replacement therapy or antidepressants?

[SueJohnson in reply to Maymount]

Didn't or did prescribe tramadol?

[Maymount in reply to SueJohnson]

Didn't prescribe for RLS. I had it since a knee injury.

[Pippins2 in reply to Maymount]

Unfortunately alcohol does worsen RLS for most of us just one very small glass of wine guarantees me a bad night .I am able to have a small Baileys or Malibu though lol so it can vary Pipps

[art37]

I have been trying cannabis oil and so far it is relieving my rls symptoms during the day. At night take 0.25 sifrol. I have put on a lot of weight with Sifrol and dearly want to get off it. The oil holds till late at ngiht then my legs start to play.. Also have been bad on dialysis till they turned the spee of the machine down, that really helps to stop it.

[Eryl]

Medications just try to supress the signals , what you need to do is tackle the cause of those un natural signals which is usually inflammation caused mostly by the food you're eating so what to do next is change your diet. There are lists on the internet of foods that cause inflammation though I disagree that including red meat as a cause.

[Maymount in reply to Eryl]

Yes you are so right about diet! I'm gluten-free but not coeliac. I bake my own breadand eat healthily 99% of the time. Chocolate esp dark can be a trigeger too. Anyone ever heard of "Stella Ganglion Block"..a procedure for RLS? My dream wld be go down the natural route without pills. Many the time I asked my GP "WHY" have I got RestlessLegs in the 1st place. She has no answer for me. I know she has alot more serious issues to deal with. I got my bloods done myself after reading your forum. Check out procedure I mentioned above on Google.

Bye for now

Eithne

[Eryl in reply to Maymount]

Part of your problem is probably the bread which is high in refinex starch, wbich i a long chain of sugar molecules easily split by your digestive enzymes.I have been able to eliminate my RLS by diet alone without medical interventions. I don't eat grains at all.

[Maymount in reply to Eryl]

Thanks Eryl. I only eat oatbread. Refine oats into flour in my nutrition mixer. Wld that be as bad?Eithne

[rideaway]

I find if I stop Pramipexole for awhile it will work again when I restart. I take .025 but never increase it, if it stops working, I stop for a few days to a week and then start it again. Dr. gave me tramadol for the time in between. Pramipexole should never be increased if it stop working, although most Drs. don't know that. The RLS specialist that I finally connected with agreed with me not increasing even though my GP told me to increase. The withdrawals would have been so hard if I had kept increasing.

[Maymount in reply to rideaway]

You are one of the wise ones! My doc said to me take another when I felt the number I was on wasn't working. I had a knee injury and was prescribed Ixprim for pain. It has 37.5 of tramadol n 500 paracetamol. While on it I discovered my RLS was much better. I shld have taken steps then to reduce prami. But didn't know I had augmentation or what it was even. Anyway I'm reducing now gradually. I'm away on hols 22May so hope I will be sorted by then. Is .025 same as .088? I'm confused there. Thanks for sharing.Eithne

[rideaway in reply to Maymount]

I was wrong on the .025, I have .25mg tablets and I take half each night which is actually .125mg. So .088 would be less if it is mg you are talking about. .25mg is the smallest we can get in Canada.

[Maymount in reply to rideaway]

Thank you for explaining that to me! Eithne

[SueJohnson in reply to rideaway]

.088 is the same thing as .125. ,088 of base is = .125 of salt.

[SueJohnson in reply to Maymount]

.088 is the same thing as .125. ,088 of base is = .125 of salt.

[Maymount in reply to SueJohnson]

Hi Sue! Evef heard of "Stella Ganglion Block" às a procedure for helping RLS?Eithne

[SueJohnson in reply to Maymount]

No