What The Heck???

[YumaGreg]

I posted last month about reducing my Pramipexol from 5.0 mg a day to .75 mg per day I had heard about the horrors of Augmentation. I am now into my second week of cutting back and I'll be danged, not one restless leg episode since new dosage. I have increased my Gabapentin nightly dose from 300 mg to 600 mg. Not sure what's going on, but I hope I haven't jinxed myself.

[Dakota13]

Hi Yuma Greg. I’m so glad you are doing so well. I too have been trying to reduce my pramipexole but I’m not having An easy time. (When the Pramipexole quit working my doctor wanted to increase the dosage. 😧That’s when I read about augmentation) I was taking .75 mg and am down to .31 mg cutting in 4ths to gradually get off. I’m taking 200mg Gabapentin Some nights are pretty good and others are awful. I’m wondering if I should increase the Gabapentin. Any thoughts?

Dakota

[Hidden in reply to Dakota13]

Hi Dakota. We appear to be on the same road. I was on 0.75mg up to last September. I have 0.25 mg tabs and have been reducing by literally cutting tabs in halves and quarterd. Reducing in steps of a quarter.

I've currently got down to 1 tab = 0.25mg.

I am also taking Gabapentin, but 300mg and this was originally for nerve pain. This seems to be working for me.

Some members on here say that the Gabapentin won't work for the RLS until completely off the Pramipexole. However, It appears to be working for me.

I intend take it as it comes and if withdrawal symptoms get too bad will first try asking for increased Gabapentin.

[Dakota13 in reply to Hidden]

Thank you Manerva for your post. Too tired to figure it out, but are you dropping 1/4 pill every 3-4 weeks? You’ve really given me hope that I can get completely off the Pramipexole without losing my mind. 😊. Thank you again,

Dakota

[Hidden in reply to Dakota13]

Every 4 weeks so far, but I hear that withdrawal symptoms get worse the lower you get so will see how it goes. Not going to struggle with it.

[Hidden]

Hi YumaGreg, sorry I don't recall your post of last month. It's great that you're managing to reduce your Pramipexole without much difficulty so far.

I would query your numbers however.

In the UK, maximum dose of Pramipexole for RLS is officially 540 micrograms (= 0.75mg). Some experts think this dose is too high.

For Parkinsons disease maximum dose is higher 3.3mg.

The dose you apparently got up to, 5.0 mg if true, is incredibly massive. Nearly 7 times the maximum.

If this is actually correct, it may be that you won't get any withdrawal symptoms. I don't really know, but imagine not unless you reduce to under 0.75mg.

[YumaGreg in reply to Hidden]

I was in fact on 5mg a day. I took 1mg in morning, 2mg at noon and 2mg at bedtime. I was on that dosage for over 10 years. Today, May 20, I decrease to .5 three times a day. Next week, down to .25 three times a day. Thanks...

[Hidden in reply to YumaGreg]

Hi again. If what you're saying is correct i.e. it is in fact the normal version of Pramipexole you are taking then I am concerned for your safety.

if 0.75 mg is regarded as the maximum daily dose and you took 1mg in the morning, that is already in excess of the maximum for RLS on its own. 2mg at noon is over twice the maximum on its own as is the 2mg at bedtime.

If 0.5mg is regarded as the maximum, then your total daily dose is 10 times the maximum.

If what you're saying is literally what I understand you to be saying, it's lucky you take it in divided doses as the combined dose appears to be an overdose. Symptoms of overdose have been found in people who have taken only 3mg. These include hallucinations, agitation and myoclonus, i.e. symptoms significantly worse than RLS symptoms and requiring urgent medical treatment.

It follows also that I can't imagine a doctor being so ignorant as to prescribe such massive doses since doctors have access to prescribing guidance even if they know absolutely nothing about RLS.

Additionally, RLS is a circadian rhythm disorder, (consequently sometimes categorised as a sleep disorder). Hence it is usually prescribed as an evening dose only. If it is required at other times this is possibly the development of augmentation or rebound.

At such high does it would seem certain that you will have augmentation and if you read up on this you will see this should be treated by reducing the dose. Unfortunately, some doctors see augmentation only as worsening of the condition and treat it by increasing the dose, and splitting it.

Perhaps you are mistaken in identifying it is Pramipexole that you're taking or you're mistaken about the dose. Otherwise it seems you are at great risk.

You are right to be reducing the dose and ideally under medical supervision. However, if that is the same doctor that was willing to prescribe up to 5mg then I wouldn't feel too safe in their hands..

You might find the following helpful

bnf.nice.org.uk/drug/pramip...

(note 0.088 micrograms is equivalent to 0.125mg, therefor 540 micrograms is equivalent to 0.75mg)

rls-uk.org/augmentation-reb...

rxlist.com/mirapex-drug.htm...

Perhaps also I have misinterpreted what you've written, I hope so.

[YumaGreg in reply to Hidden]

I've explained it as clearly as I can. Let me try again. I get my Pramipexol in 1.0 mg tablets. Each morning, I took one tablet...at noon, I took two tablets and at bedtime, I take two more. Total. 5 mg daily. I also take Gabapentin 300 mg each morning, 300 mg at noon and 600 mg at bedtime. I have started titrating (sp) down with final dosage being 0.75 total daily. The numbers and meds listef are accurate.

[Hidden in reply to YumaGreg]

Sorry YumaGreg, I accept what you say as being accurate, I only hoped you were mistaken. Of course I wouldn't want to imply you were deliberately mistating the amounts. I didn't think that.

However, as explanation for what I wrote as I did, I suggest you visit the links I sent you. The sources are reputable sources of accurate information.

I can appreciate your frustration at me not accepting what you're saying, but if you read the information perhaps you will appreciate my concern for your safety.

[HuggCub1]

Dear YumaGreg,

I have been on Gabapentin for years. My dosage is (lowered now to) 2-400 mg at bedtime, so 800 mg but my RLS is very severe, and 800 mg isn't a high dosage compared to what a lot of people have to take. I also take 1mg of Pramipexole (for over 6 months) along with the Gabapentin. They all work for a long while, but eventually the dosage has to be increased. I have read a lot of posts here that say the same. I try to take the least dosage possible as long as I can. Medical marijuana, just about 2 hits, calms and relaxes my legs until my meds start to work in the evenings. (I outgrew the desire to smoke it probably 35 years ago so its not for fun), it works. Can't "overdose" and it takes very little to really help me. Augmentation is something we all face in RLS or neuropathy medications. I found that the first night I took Pramipexole my legs did not move the whole night and it still works well most all the time. Different meds affect each of us differently so we all have to find the combination that works for us. I just try to take the lowest dosage as long as I can without having to increase it. I haven't had to increase anything since I began occasionally having to smoke marijuana in the evenings. I do have much more trouble with my legs and feet if I have been emotionally stressed or have done a lot of physical exertion.

Drinking about 2 glasses of water before bedtime really helps with the leg cramps etc.

I hope you find the combination that helps you. Are you doing okay with your Pramipexole?

[Joolsg in reply to HuggCub1]

I’ve just read your reply. Have you put the correct dose of pramipexole? 1mg is 8 times the maximum dose. If you’ve augmented on Ropinirole then being in such a high dose of pramipexole will cause Augmentation really fast.

Or is it a typo?

[HuggCub1 in reply to Joolsg]

No, not a typo. I have had to take meds for 43 years now for RLS and Neuropathy, (not diabetic). If there is something other than meds that can help me I would really love any input! I have been tired of taking meds for years. But yes 1 Mg is correct. It is prescribed to me at 1 pill 3 xday. I often take 1/2 pill in the evenings. Normally though I only take 1 (1 Mg) Pill at bedtime along with 800 Mg Gabapentin and 1 Mg of Ropinerole.

My RLS is not "the urge to move my feet or legs". My legs and arms, move me and it has been this way many years.

Input please, everyone?

[Joolsg in reply to HuggCub1]

Simple- your dopamine receptors are completely shot due to negligence of your doctors prescribing pramipexole AND Ropinirole at way too high a dose.

Look at the pinned post top right- you are in full blown Augmentation and will have severe RLS most of the day & it’s spread to other body parts.

The only way to stop it is to slowly reduce the pramipexole and the Ropinirole. It is extremely hard and you will probably need opioids to get you through.

If in the UK see your GP armed with print outs on Augmentation and if in USA visit a specialist in RLS who will help you through withdrawal and arrange alternative meds for when off the dopamine agonists.

A recent study has shown Ecopipam can reduce Augmentation symptoms so if you’re near Baltimore you could see someone at Johns Hopkins who may prescribe this.

Gabapentin alone helps a lot of people with RLS but it won’t help your RLS until about 3 weeks after your last dose of pramipexole and Ropinirole.

I went through Augmentation in 2016 and am now controlling my RLS with pregabalin ( Lyrica is the brand name) and low dose OxyContin.

Read all you can about Augmentation- most doctors are totally ignorant so you have to become an expert.

Also get your bloods taken and ensure serum ferritin is above 100. Augmentation is less severe if levels are higher.

Let us know how you get on.

[HuggCub1 in reply to Joolsg]

After my post and then reading some of yours I googled Augmentation. Studied it. I'm amazed but have moved and changed doctors several times. Still my past my past 2 doctors should have done something. I remember the horrible nights years ago if I ran out of Requip even one night was near insanity. Sleeping in tubs of hot water at night. It sounds like I'm facing another, now that I have to ween off of these meds. Is life not complicated enough! Seeking a specialist and doing more studying. Just...wow.

Will check my email more often. Thanks for catching my attention. This is not going to be easy. I have had it in my arms and chest for years. Sometimes I felt like I was going to have a seizure.

Please help pray that I will find the right help.

[Joolsg in reply to HuggCub1]

I am sending positive thoughts your way. I came to this site in 2016 in desperation and it quite literally saved my life. The people on here know more than any doctor and most neurologists I have seen.

I went through withdrawal and my doctors were useless- so I did it using tramadol and cannabis.

Where are you? If near Redwood, California you could see Dr Buchfuhrer. He is a leading RLS expert and would get you off all that pramipexole and Ropinirole.

[YumaGreg in reply to Joolsg]

I am in Yuma Arizona...3 hours to San Diego...3 hours to Phoenix...4 hours to Tucson...5 hours to Vegas and 30 minutes to Mexico...I'm just not sure I can do this. I am so pissed at doctors...What have they done to me...So much for "do no harm"...

[Joolsg in reply to YumaGreg]

Hi YumaGreg,

I apologise for the confusion- I was responding to HuggCub who is in Augmentation like you, but he is on a much, much higher dose of pramipexole.

You are doing really well if you have reduced your dose- withdrawal takes every ounce of strength and willpower to survive. I didn’t think I would make it but I did. When you think you can’t take any more- remind yourself how far you have come and how poisonous those dopamine agonists are- you are claiming back your life and once through withdrawal, life is so much better.

You are 600 miles from Dr Buchfuhrer in Redwood, California- one of the best RLS doctors in the world. A return flight from yuma to San Francisco is about $250 so if you could get to see him he would help you through withdrawal and help find the right meds to control your RLS.

We all feel badly let down by our doctors but noone knew about Augmentation 5/10 years ago and the vast majority of doctors are still totally unaware of it. That’s why we have to become our own experts- until medical books are updated we have no choice.

Stay strong and keep going-

[Hidden in reply to HuggCub1]

Just to follow up Jools' query. There is, I believe, a 1mg tablet of Pramipexole, probably because people suffering from Parkinson's disease have to take a higher dose. I also wonder if you've made a mistake about that dose.

If you say you have had to increase the dose that far, then you're probably suffering augmentation.

[YumaGreg in reply to Hidden]

Okay, here's the rest of my story. In 2004, I was diagnosed with Parkinson's Disease. I was taking every movement disorder medications there was. Everything from Carbadopa/Levadopa to Neupro patch, to self injectables to Pramipexol to Gabapentin to whatever came out next. None of it worked. Next step, Deep Brain Stimulation, brain surgery. I spent years trying to get settings right. Never did. I found a new neurologist, he ordered a new, at the time, procedure the Dat Scan. No Parkinson's Disease. I was misdiagnosed big time. So there I was with metal stems in my brain for nothing. I have been seen by several neurologists in two states. I always presented as having Parkinson's Disease. No answers. I check myself into Mayo Clinic Scottsdale. I am placed in their Epileptic Monitoring Unit and after 4 days of testing, I was told I had Non Epileptic Seizures. There was no treatment. All this started in 2004 and in 2015 I got a handle on my neurological problrms but I'm thinking I fell through the cracks when it came to medication, especially Pramipexol. I have been on Pramipexol 5.0 mg as an agonist since 2004...Two things here, the first movement specialist I saw really screwed me up. And I guess I screwed myself up by not figuring it out and by asking more questions...Oh well, I'm 69 now, no one lives happily ever after...

[Joolsg in reply to YumaGreg]

Just read your latest post. As you were misdiagnosed with Parkinson’s disease, that would explain why you were on such a high dose of dopamine agonists.

If the Mayo clinic now say you don’t have Parkinson’s but non epilepsy seizures, I presume you also do not have RLS?

Anti seizure meds like Gabapentin or pregabalin might help? Or I’ve been reading a lot about how an Atkins type keto diet controls seizures in children. You might find that changing your diet to a keto MAD ( modified atkins diet) controls your seizures. I’ve tried many diets for RLS for extended lengths of time - it’s worth trying for 3 months to see if it helps you once you’re off the dopamine agonists.

[Hidden]

I also suffered with augmentation with the ropinirole. This is so horrible with the RLS. sometimes I feel like I'm going to lose my mind.