Rls problem

[Taz66]

Im taking 7 pramipexole 0.088mg daily and im still having trouble also I think I got it in my arms. Anyone having same problems. Thanks.

[SueJohnson]

The acceptable maximum daily dose is 0.5 mg in most patients, so you are over that amount. You are suffering 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 when they move to other parts of our body (arms, trunk or face) or when the intensity of your symptoms worsen. Your doctor is negligent in allowing you to increase your dose this much and obviously is not up to date on RLS. pramipexole is what's called a dopamine agonist and they used to be the first line treatment for RLS but are no longer. Gabapentin is now what is used. It is important that you 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 at

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

You need to come off the pramipexole and it will not be easy and you will suffer but you will be glad in the long run. Normally you should reduce by .125 mg every 2 weeks or so, but since you only have .088 tablets, reduce by .088. You will have increased symptoms. You may need a low dose opioid temporarily to help out with the symptoms. Start gabapentin at least 3 weeks before you are off ropinirole since it takes at least 3 weeks to be effective, although it won't help much until you are off ropinirole for several weeks. Beginning dose is usually 300 mg gabapentin or 100 mg gabapentin if you are over the age of 65. Once you are off ropinirole increase by 100 mg every few days until you find the dose that controls your symptoms. 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily"

[LotteM]

Good reply from Sue. This time she forgot to mention the iron. Read the Mayo Clinic Proceedings paper and start with getting a full iron panel on your blood. And ask for the actual results. If ferritin is below 100 start supplementing with iron. Most of us like iron bisglycinate as it is not/less constipating. And it suffices to take one iron pill every other day. Timing is best just before bed, ie an empty stomach.

Do some reading on this forum. You will learn quickly. And never hesitate to write for support, advice or just to moan. We're here to listen and help. And we really do understand!

[Joolsg]

Taz, as others have advised, you're suffering augmentation if RLS symptoms because your doctors have increased your dose way too high.Dopamine agonists are no longer first line treatment because of this increasingly common complication.

The only solution is to get off it completely. Reduce by half a 0.088mg tablet every 2 to 3 weeks. RLS will flare up with each reduction so ask for tramadol or Oxycontin to help the withdrawal symptoms. Take a minimum of 3 months to withdraw. The last 2 weeks are hellish with little/no sleep but once off Pramipexole, the RLS will be less severe and only in your legs in the evening.

New meds like pregabalin or low dose opioids should be started about 4 weeks before you stop Pramipexole completely. Arrange 2 weeks off work for the tough part of withdrawal and have someone with you at night as falls from exhaustion are common.

As Lotte says, ensure ferritin levels are above 100, preferably 250.

Cannabis really helped me during withdrawal so if you can get hold of some, do so.

Read everything you can about Pramipexole, augmentation and withdrawal and print off the Mayo algorithm to show your doctors.

[Taz66 in reply to Joolsg]

To be honest I do smoke cannabis, I still need tablets n looking 4 more its driving me crazy.

[Joolsg in reply to Taz66]

It will continue to drive you crazy until you get off that poison. Start now and you will be off it in 3 to 4 months and can start to live again with RLS under control.Many of us have done it.

[Taz66]

Thank you.

[SueJohnson]

On the iron: If your ferritin is less than 75, you should take 325 mg of ferrous sulfate or iron bisglycinate as LottieM mentioned with 250 mg of Vitamin C or some orange juice. If your ferritin is over 75, then you should get an iron infusion. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after you eat or have coffee as it is absorbed better on an empty stomach. If you take magnesium don't take it at same time as iron tablets as it interferes with iron's absorption. Take it at least 2 hours apart.

[Bieler]

I have posted this a few times. After trying everything, tramadol HCL is the only thing that worked. I take 50 mg 4-5 times per day. I stumbled upon an RLS blog and so many people said Tramadol is the miracle they were looking for.

I had been in bed for 2 days with constant pain and fatigue from no sleep. I had an old bottle of tramadol from an injury (it never helped with regular pain) and took 2 50 mg pills. Within an hour I was “normal”.

The next day I called my Dr. She gave me an RX for off label use as she knows how much I suffer. That was 10 years ago. I have never increased dosage and actually went down on dosage from 8 to 5-6 per day.

I hope you get relief.

[erinjee]

Take your time and remember we are alldifferent and respond differently to each med. For me, after being up to 3mg of pramipexole after 20 years on the med, I’m off and using buprenorphine mostly successfully. I still have RLS in my arms. It’s not just from augmentation it’s also a measure of how severe your personal symptoms are. I’m also struggling with the 2mg dose of buprenorphine maybe needing to increase which is frustrating. It’s a lot of experimenting to figure out what works for your body but you will find tons of good information and support here. Good luck, you can do it!!!