Wrestlers legs

[Docholiday1]

Hi Buddy I had to come off repinorol too many side effects worst being panic attacks. I am on pramipexole

Been on a few months definitely the best so far. Must be taken at same time everyday. Otherwise I get an hour or so mad legs. Still horrendous.

[SueJohnson]

Why did you come off ropinirole and than go on pramipexole which is another dopamine agonist like ropinirole? Up to 70% of people on it will eventually suffer from augmentation which believe me you don't want.

[Docholiday1 in reply to SueJohnson]

I was suffering panic attacks The Dr prescribed Pramipexole. What do you suggest?

[SueJohnson in reply to Docholiday1]

Gabapentin is now the first-line treatment for RLS. Dopamine agonists used to be which is why so many doctors prescribe them but they are not uptodate on the latest treatment. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment.

[Docholiday1 in reply to SueJohnson]

Thank you will ask Dr.

[SueJohnson in reply to Docholiday1]

You will probably have to print out the appropriate section of the Mayo Clinic Article and show him since he is not uptodate or would never have prescribed pramipexole. 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 your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation numbers. You want your ferritin to be over 100. If your ferritin is less than 75 then take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach and preferably at night. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it interferes with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets 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. On the gabapentin, beginning dose is usually 300 mg gabapentin. 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 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.

[Joolsg]

Bad decision by your doctor. As Sue advises, these drugs are no longer prescribed by experts. The problem in the UK is that doctors know very little about RLS or the drugs used to treat it and the NHS and NICE guidelines are about 4 years out of date as a result.The VERY first thing a GP should do is check what meds you're on. Anti depressants, anti histamines, statins and beta blockers, among others, cause or worsen RLS.

After that, full panel bloods should be taken and no meds considered until levels raised.

The majority of RLS cases can be resolved by raising brain iron but sadly, UK doctors don't know this as they've never been taught the basics and don't have time to research during the 10 minute appointments.

Research extensively as you will get better treatment if you are aware of all the latest evidence.

Pramipexole WILL worsen your RLS in time & it's hell to get off so best to find a med free solution first.

If raising iron levels doesnt help, then meds like gabapentin or pregabalin are first line treatment.

[Dotmowatee in reply to Joolsg]

My GP, consultant and pharmacist are bang up to date with rls in Plymouth. I have had an iron infusion and am managing in a low dose of pramipexole. They are monitoring me.

[Joolsg in reply to Dotmowatee]

Pramipexole is no longer first line treatment because of the VERY high rate of augmentation of symptoms and Impulse Control Disorder. World experts do not prescribe Pramipexole or Ropinirole now. NICE and NHS are about 4 years behind the advice of the top RLS experts.The rate of augmentation on Pramipexole is 7 to 8% a year cumulatively. After 10 years on Pramipexole nearly everyone will augment. If it stops working, do not increase the dose. That is when your doctor needs to replace the meds.

I really hope they have informed you of this high rate of augmentation and that when you do start to get increased severity of RLS, they know how to safely monitor you through withdrawal.

I'm pleased they considered an iron infusion.

Many GP training courses are now pointing out the dangers of Pramipexole and Ropinirole.

nbmedical.com/kiss/kiss-res...

[Dotmowatee in reply to Joolsg]

I am very aware of augmentation.

[Cocktails in reply to Dotmowatee]

Would you be able to give me some more details regarding your consultant and pharmacist in Plymouth? My mum lives in Plymouth and would very much appreciate any information you can share. She has been battling away with very little success since 1976. Thank you Dotmowatee.

[Dotmowatee in reply to Cocktails]

I belong to Deans cross surgery in Plymstock and the pharmacist called O Gallagher works from the surgery . The best consultant I found was actually in Bath, Robin Fackrell. I paid to see him. Dr Wayne Thomas in haematology at Derriford was excellent. Good luck.

[Cocktails in reply to Dotmowatee]

Thank you so much. I will pass this information on to mum.

[Inkosikazi]

I hope your doctor advised you about pramipexole’s strange side effects, like compulsive gambling, which somehow must have escaped my doctor’s mind. I was drawn to the casinos regularly and I never liked to gamble. The urge was irresistible. When I randomly came across an article about that phenomenon, I demanded my doctor take me off the medication. I am now on low dose opioids and medical marijuana. Doesn’t work as well as Mirapex (pramipexole) but I save lots of money! I tried gabapentin, but I did not like the way it made me feel the next day. Very sluggish. Different things work for different people, so best of luck finding your successful treatment.

[Purplelegs-123]

Hi there. When I first started with pramipexole I was on 1 tablet a day. A miracle at the time. I must have been on them for 20 years at least. As other folk have said you them find you need to take more to get the same effect. Up to 4 a day and even pinching another 1 or 2 when desperate. I am also on omeprazole and discovered that this effects pramipexole!! Early days and experiencing quite uncomfortable reflux but I’m cracking on because my legs are responding well. Down to 2 tabs and I’m hoping to go back to 1. Worth a go I reckon. Good luck but keep an eye on your progress.

[Joolsg in reply to Purplelegs-123]

Omeprazole worsens RLS. Consider changing diet or other magnesium based indigestion formulas or good probiotics like Symprove or VSL.Hope you manage to get off Pramipexole without severe withdrawal symptoms.

[Purplelegs-123 in reply to Joolsg]

So far I’m not completely off pramipexole but thankfully getting on well with the 2 tab dose. Much better without the omeprazole. Just managing reflux with off the counter products. Bit painful but worth it I feel. Small steps isn’t it. Thankyou for your good wishes to me 👍

[Joolsg in reply to Purplelegs-123]

Go slowly and start replacement meds as you reach the last half a 0.088 pill. Let us know how it goes.

[SueJohnson in reply to Purplelegs-123]

The replacement medication you want to take is gabapentin. The beginning dose is usually 300 mg gabapentin. 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 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 at

Https://mayoclinicproceedings.org/a...

Also have you had your ferritin checked?

[captaineddie]

I've been on pramipexole for around 20 years and got up to 3 x 1.5 mg a day. I would take one around 2pm and two at bedtime. That helped with the augmentation, but I didn't want to be on that high a dose. I tried gabapentin but didn't help me at all. I currently take two 50mg of tramadol and two 1.5 mg of pramipexole at bedtime. That has given me relief of RLS symptoms at night and during the daytime. I'm 76 and have struggled with RLS since I was 30. It runs in the family both my mother and one of my daughters.

[SueJohnson in reply to captaineddie]

You say gabapentin didn't help you. How much were you on?

[captaineddie in reply to SueJohnson]

Hi, I took 300mg twice at bedtime. I was only on it for about a month. I was trying to switch from pramipexole but it didn't work out for me and stayed on the mirapex. I got relief after I added the tramadol. I'm hoping this works long term. They say that RLS isn't fatal but all the meds we subject our bodies to are.

[SueJohnson in reply to captaineddie]

As Joolsg said, 3.5 mg is way too high. It is seven times the recommended maximum dose. On the other hand the gabapentin dose you tried was way too low. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you are taking 3.5 mg you are augmenting. I suggest you slowly wean yourself off pramipexole by reducing by .125 mg every couple of weeks and 3 weeks before you are off it start gabapentin again as it takes 3 weeks to be fully effective, although it won't help your RLS much until you have been off pramipexole for several weeks. Also, have you had your ferritin checked?

[Joolsg in reply to captaineddie]

3mg of Pramipexole is way too high a dose for RLS. The max is 0 .5mg but most experts think it should be 0.125mg.I see you reduced from 4.5mg so well done.

Keep an eye on symptoms worsening & look up Augmentation so you're prepared.

[Thea2014]

Hi docholiday I’ve been on the same tablets for many years but recently not been working having a nightmare at the moment waiting for consultants decisions on what to give me