Pramipexole is the key

[wildlegs]

I’ve been taking 100 mg of tramadol and 1 mg of pramipexole for a while now and it works really well. For years I just took tramadol and it worked 80% of the time. By adding pramipexole an hour before sleep it’s close to 100% effective. No side effects. Try it you’ll like it.

[Joolsg]

1mg of Pramipexole. Is that a typo? That's way above the recommended max dose.Pramipexole is no longer recommended or first line treatment because of the very high risk of Impulse Control Disorder and Augmentation of symptoms.

Most experts no longer prescribe it.

Sadly, many members of this forum are aware of Pramipexole and Ropinirole as they join desperate for help after years on these drugs. They're miraculous at first then worsen the RLS - 8% pa rate of augmentation means most people WILL suffer severe increase in their RLS symptoms.

The advice now is that Pramipexole shoild only be prescribed as a last resort when all other drugs have failed & the dose should be kept to a minimum (0.088).

I suggest you read the pinned post on augmentation so you can keep a careful watch for an increase in severity. Never increase the dose.

[wildlegs in reply to Joolsg]

Not a typo. My doctor gave me two .5 mg pills months ago but now I get one 1 mg pill along with two 50mg tramadol daily and all is good. My sleep clinic doctor and my GP both think this is okay. I had a harder time getting tramadol. Wisconsin is against all opioids.

[Joolsg in reply to wildlegs]

Just keep an eye on it. Withdrawal is the ONLY possibility when you start to augment and it is hell on earth. The older you are, the more difficult it will be.The best resource is rls.org.

Did your sleep doctor and GP talk about serum ferritin ?Did they warn you about Impulse Control Disorder? Did they warn about augmentation ?

Any doctor with basic knowledge of RLS should have discussed all of this with you and they should be aware of the new Mayo algorithm on the latest treatment which specifically states Pramipexole and Dopamine Agonists are no longer first line treatment.

Also have a look at Dr. Winkelman's opioid study at Massachussetts General Hospital.

I just want you to be aware of the downside of Pramipexole. Doctors are completely unaware of the dangers.

mayoclinicproceedings.org/a...

[SueJohnson in reply to wildlegs]

Joolsg is right. That is twice the recommended dose of pramipexole and up to 70% of patients will augment on it which believe me you don't want. I augmented after only 8 months! Your doctor did you a great disservice by prescribing that and it is evident that both your sleep doctor and your GP are not up to date on RLS if they think twice the maximum dose is OK. You need to at least slowly cut back to .5 mg by reducing .125 mg every 2 weeks. Once you are down to .5 mg for a few weeks, if you feel you need more, then you are augmenting. Preferably you need to come off it completely by continuing to decrease by .125 mg every 2 weeks. You will suffer, but it will be worth it in the long run. You will probably need to increase your tramadol especially as you near the end. Dopamine agonists like pramipexole and ropinirole used to be the first-line treatment which is why so many doctors prescribed it but they are not up to date on the current treatment recommendations. 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 at

Https://mayoclinicproceedings.org/a... 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. Improving it to that helps 60% of RLS patients. 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. 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. 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. Your doctor should prescribe gabapentin. The beginning dose is usually 300 mg gabapentin or 100 mg if you are over the age of 65. 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 don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin.

[Amy881]

Yea it’s the 0.088mm I’m on for pramipexole I don’t feel anything from them tbh I’ve been on tramadol god about 2 year now two of them take the restless legs symptoms away really quickly

[SueJohnson in reply to Amy881]

Have you thought about coming off the pramipexole? See my post above.

[Amy881]

I haven’t long started them hun doc said to give them a while like any other drug

[Joolsg in reply to Amy881]

Oh dear Amy,I hope the GP did blood tests. You are only 33 and the RLS has probably been triggered by the anti depressants you're on. Is there any possibility of switching to trazodone or benzodiazepines? If you get off the anti depressants, the RLS will probably disappear.

The GP should have warned you about Impulse Control Disorder and Augmentation on Pramipexole and if he didn't, that is negligent.

We had already warned you not to start Pramipexole as it is no longer prescribed.

GPs in the UK know nothing about RLS as it isn't taught at med school or during training.

Did the GP order blood tests? Serum ferritin needs to be over 100, preferably 250 for those with RLS.

As you've only just started it, I suggest you read the Mayo algorithm, read the pinned post about Augmentation and consider stopping it NOW.

Augmentation rate is 8% a year, cumulatively, which means nearly everyone will suffer augmentation of symptoms eventually.

Withdrawal from Pramipexole is more difficult than heroin or crystal meth Withdrawal so do think about your options now.

.

[Amy881 in reply to Joolsg]

Yea they did warn me as it’s a low dose the rls only started a few month back I’ve been on antidepressants for years hun x

[Joolsg in reply to Amy881]

Then definitely get bloods checked & start oral supplements of ferrous bisglycinate ( gentle iron). The vast majority of RLS patients see dramatic improvement by raising ferritin above 100, preferably 250.

[briscc in reply to Joolsg]

I am trying to slowly wean off the pramipexole. What are the side effects? For me it has been increased RLS symptoms . Dr. has added Pregabalin

[Joolsg in reply to briscc]

Yes- the RLS becomes more and more intense.The 4 to 5 days after you stop the last dose are the worst- you'll get little to no sleep at all and the intensity makes you want to throw yourself out of a window. Make sure you take time off and have someone with you as falls happen. You have no choice but to keep moving even though exhausted.

I do know of 3 people who didn't have a terrible withdrawal. They increased pregabalin to 150/200mg before slowly reducing the Pramipexole.

I found the only drug that helped me was illegal cannabis sourced by my children. That gave me 30 mins sleep after 5 days of zero sleep/rest.

Cannabis is now legal for medical use in the UK.

Stick with it as once off dopamine agonists, the RLS becomes less intense and most people manage to find a good replacement.

I wish you strength.

[wildlegs in reply to briscc]

Why are you getting off if it works?

[Freegaza786 in reply to Amy881]

Amy881 your a similar age which should make my story stand out to you, given I had been on antidepressants for years. And antidepressants played a big part in my RLS. Being on Citalopram, Escitalopram, Serterline, and in the end for years at the same time Venaflaxine Effexor 150mg, Mitazipine 45mg, Pregablin 450mg, Lorazepam 1-4 mg, all daily.Unbeknown to me I took journey of coming of all these drugs, due to the adverse reaction to the lorazepam in January 2020 which first triggered and eventually dramatically improved my RLS. What I now found out the 450mg pregablin was masking the symptoms of RLS being triggered by the antidepressants I was already on at that time.

Also read my reply below about Dopamine Agonists (DA’s). I know you say the doc says give them a while but if you knew the consequences of augmentation and Impulse Control Disorder (ICD) I can be sure you would be given it some serious thought.

We are not at a age to being having such bad RLS without something triggering it off. antidepressants play a big part and I suppose you got to find that balance dependent on your circumstances. Weather your circumstances will allow you to come off the antidepressants, weather you can stay on them and find something to control your RLS, Weather you can switch to antidepressants which are RLS safe ie in uk Trazodone.

General consideration should be given consideration too, especially iron. At our age, the less medication we can take to manage our RLS the better.

Oh god Joolsg not another one being completely sent down the wrong path. What the bloody hell is wrong with the medical profession 🤦‍♂️

[Joolsg in reply to Freegaza786]

They receive zero training on RLS at medical school or during GP or neurology training. Sadly most people with RLS know far more than their doctors.I truly despair.

[Toast5577]

I also took 1mg pramipexole and 50mg tramadol for over ten years. It was very effective - until it wasn’t. I think the tramadol was mitigating augmentation from the pramipexole but I didn’t know thatat the time. I had done enough reading to know that if my RLS started getting worse then I needed to get off my medications and switch to something else. I couldn’t take more tramadol because of terrible itching as a side effect. Eventually I made the switch. I’ll never know if it would have been better to switch earlier. Since withdrawing from pramipexole (and even tramadol) is extremely hard, I don’t think it’s unreasonable to stay on a regime that is working for you. Hopefully it will continue working for the rest of your life. If not, the advise given here in how to withdraw is excellent.

Looking back, I wish I had never started on the pramipexole in the first place and I feel angry that my physician was not current about RLS research. Hindsight is 20/20 and we each have our own journey.

[PoorRichard]

One thing we have to consider is Wildlegs' age - 77. Of course I wish them a long life, but I wonder a) how significant it is to worry about augmentation in the elderly and b) what motivation do doctors have to be mindful of their elderly patients. In other words, what role does pt. age play? Is this a case of palliative care? Ageism?

[Joolsg in reply to PoorRichard]

It's more important to consider augmentation as getting off these drugs is the only thing that will stop the dreadful augmentation ( which is inevitable at some point) & withdrawal is hellish. The older you are, the higher the likelihood of falls during withdrawal.I don't think DAs should be prescribed at all any more and definitely not to older patients.

[PoorRichard in reply to Joolsg]

I agree on the problem of augmentation! My question frankly was how likely is augmentation given the patient's life expectancy?

[Joolsg in reply to PoorRichard]

Augmentation can happen within 6 months ( many members on here have augmented very, very quickly) so it is definitely something doctors should consider.

[SueJohnson in reply to PoorRichard]

I am age 81 and augmented after 8 months. I am healthy and expect to live to 100. Life expectancy for a 77 year old male is 10 years and for a female is 11.6 years and that includes an average for all people, healthy or not. Would a patient want to risk augmentation when they are much older and perhaps in poor health. Better to get it controlled now with gabapentin.

[wildlegs in reply to SueJohnson]

I'm not sure what you mean by augmentation. I too expect to live to be 100.I live in Wisconsin and not sure what you mean. The two drugs I take won't work together?

[SueJohnson in reply to wildlegs]

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 your body (arms, trunk or face) or when the intensity of your symptoms worsen. Up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment.

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

[Joolsg in reply to wildlegs]

Augmentation means increase in severity of Symptoms. Pramipexole makes the RLS more intense 24/7 and RLS moves to your arms, hands, shoulders, face. You can no longer sit still at any time during the day and it is horrendous. Cinema, theatre, watching TV become impossible as you can't sit still and need to walk up and down constantly. The sensations are overwhelming and unbearable.

I was 56 when it happened and I nearly didn't make it through withdrawal. It was hellish. 4 days and nights with zero sleep or rest and I fell badly several times through exhaustion. Then 10 days of little sleep. Eventually the intensity reduces and new meds help.

Look up videos of people going through dopamine agonist withdrawal.

As tramadol worked well for you, your doctor should have considered another low dose opioid or pregabalin or gabapentin.

[grassgree in reply to PoorRichard]

I am 70 and augmentation happened after 3 weeks.

[wildlegs in reply to PoorRichard]

I’ve had RLS for 30+ years and nothing I’ve ever taken has been a long term cure. Tramadol worked the best for me. After about seven years it was not working as well as before. My doctor suggested pramipexole to go along with the tramadol and it’s been working great. My doctor says we’ll monitor the results and see if we need to adjust something. This has the best combination of drugs to help my RLS and I’ll keep taking them until they don’t work. Every drug has a list of side effects and you just have to watch how they effect you personally. So far one mg of pramipexole and 100 mg of tramadol is working great for me. Work with your doctor and do what’s best for you

[PoorRichard in reply to wildlegs]

Just curious if you've read much on this forum. There's a lot of sound advice regarding Iron supplements, low inflammation diet, other medications, and withdrawal from dopamine agonists (DA) like pramipexole. Definitely reconsider and ask your doctor about gabapentin instead of DA.

[Joolsg in reply to wildlegs]

I hear you Widelegs, but those of us who have been through augmentation and withdrawal would not wish it on our worst enemies and that's why we are sounding the alarm now. The high dose you have been prescribed is of huge concern.All we can do is forewarn you and let you know that most doctors know zero about these drugs which is why we don't trust many of them except the experts who co wrote the new Mayo algorithm.

I wish you well.

[Hidden in reply to PoorRichard]

If one is augmenting then that person is not getting relief so no sleepnight or day. The higher the dose of a dopamine med the harder it is to get off it the withdrawals will be horrendous

[CookiePooki]

Thanks I will ask my doctor for a prescription my RLS is getting worse and I've been on tramadol for about 3 years now

[Lilaclady57]

I have been on just Pramipexole 0.25mg 3 tabs before bedtime since 2016 and it worked like magic with my RLS and Klonopin 1mg 2 tabs at night until summer of last year. I started having augmentation! Like you wildness, I too have been dealing with these damn legs for 30 years! I've been on everything they can give you for RLS and have always gotten to the point when Augmentation starts, then onto a new medicine. I also take 225mg of Venlafaxine ER (Effexor)When it started acting up last year. I called my DR to see if I could take more so the legs would stop. They were jumping morning, afternoon, night and waking me up from the little naps I call sleep every night! I also have Sleep Apnea but can't wear the mask! So the physicians Assistant called me and told me to take 3 pills during the day, then another 3 at bedtime! I said ok yes! I was a zombie for 2 days before I remembered that you do not increase the medicine when augmentation is going on, it just gets worse and then my arms were going crazy. I've been trying to get into John Hopkins in Maryland for two years to see Dr Earley, who treats RLS with Methadone with no luck. They weren't taking anymore RLS patients! I have been so miserable, grumpy, antisocial, depressed and have even thought about not waking up anymore! My Primary Dr wouldn't talk about the Methadone because the FDA has not approved it for treating RLS! Like, who really listens to the FDA anymore. She sent me off to find a Neurologist that new about the opioid treatment. Well, I found one and went to see him today! He is wonderful! He ordered all the Iron blood work plus B12, Vitamin D and TIBC. Along with my regular blood work! The stress that this augmentation has put me through has caused my blood sugar and blood pressure to blow up! Very bad! He also wants a new sleep study done, reduce my anti-depressant to 150mg and klonipin to one pill a night, I started doing that 2 days ago, knowing they would have to go. But instead of Methadone, he is putting me on Horizant ER 600mg! For a 90 day supply the cost is almost $1400! Him and my insurance company can fight that one out! Would have been so much cheaper to put me on Methadone lol

Wow, my replies always turn into big stories 🤦‍♀️ So here is my advice to you wildlegs: Enjoy your peace for as long as you can, do not go higher on the pramipexole than you are right now, this is the best time in your life with RLS it will be! BUT, if you even start getting just a wiggle that is not normal for you, please just start cutting back a little at a time and when you get to half of what you are taking now, tell your Dr that you are going to need something else so that you get the new stuff working while getting off the pram - IF it ever happens🤷‍♀️ Enjoy your life now! That's all any of us can try to do these days! Good luck👍

[SueJohnson in reply to Lilaclady57]

Chances are your insurance won't cover it. Check out the Horizant web site. They offer a prescription card which if you are eligible for it makes it very inexpensive, eg $75/month with no insurance. If not eligible check out Goodrx which offers a 21% discount or $414.77 for 30 tablets. If you don't have RLS symptoms during the day, as you apparently didn't before the augmentation and therefore shouldn't now if you are over the augmentation, gabapentin is inexpensive. The Effexor in some people can make RLS symptoms worse. A safe one for RLS is Wellbutrin.

[wildlegs in reply to SueJohnson]

My insurance covers both meds

[Lilaclady57 in reply to SueJohnson]

My insurance and the Dr are fighting it out lol. I just think it would be easier and much cheaper to put me on the Methadone! My insurance will cover most of it, leaving me with a little over $350 and I did get the discount card too! But between this and my diabetes meds - just wow! I have to sign up for Medicare soon and I'm going to make sure I get a good prescription plan lol

[SueJohnson in reply to Lilaclady57]

I am on medicare and once you are 65, you aren't eligible for the Horizant prescription card and I have checked all the prescription plans in my area (Northern Virginia) and none cover Horizant. Good luck !

[wildlegs]

thanks for the advise I appreciate it. I'll keep taking what the doctor prescribed until it doesn't work.

[Freegaza786]

wildlegs i felt compelled to reply you.

Advice from Joolsg and SueJohnson has been quite frankly spot on the topic of Dopamine Agonists (DA’s) Ropinrole/ pramipexole and should be given some serious consideration. Majority of Clinicians DO NOT know the dangers and damage these drugs can cause to individuals. In some cases unrepairable damage. Both physically and mentally. I am unfortunately one of them.

In my case I have been very sensitive to all medications, and i understand everyone being an individual and all that. But DA’s outweigh all that. Please do read my recent posts and others replies to it. Apologies I haven't the capacity to go into my story tonight. But DA’s should be a serious no no. Maybe if you had said you started on 0.125mg or even 0.25mg I would not be replying.

Given your age and how effective you say tramadol has been. I would be considering tapering off the tramadol (if it’s not longer got that efficiency) and looking at low dose Buprenorphine. I don’t know if that’s available in the states.

Please take care. I hope 1mg works for a long time to come, and i sincerely mean that . But if things gets worse please give it some serious thought about not increasing and tapering off it.

Wishing you all the best.

[wildlegs in reply to Freegaza786]

Thanks for the good words. So far I’ve taken seven different meds to try and help with the RLS and tramadol is the best. It works 80% of the time but combined with new drug it’s 100% effective. I will without a doubt keep regular appointments with my doctor and hope for the best.