augmentation

[Bloodhound669]

This is ridiculous! Been off of Pramipexole for good for the past few days and my legs and feet are killing me. I cant lay down, sit down or sleep at all. Two complete nights in a row with NO sleep and and no let up of creepy mild tingling. All I do is walk around all day and night. I'm 76 years old and I need my sleep as they say it's important. How long do I need to go without something?

[SueJohnson]

This is a result of your being taken off pramipexole by an incompetent doctor and with no plan in place. I suggested you borrow money so you could see an expert. Otherwise you will continue to suffer.

[Joolsg]

Most people cannot get through the brutal withdrawal without starting replacement meds about 4 weeks before the last dose of pramipexole.I used tramadol every 4 hours for around 2 weeks.

Most people will have started pregabalin or gabapentin about 4 weeks ago.

Has your doctor decided you have to have a 2 week washout period? It is the method favoured by Johns Hopkins to ensure they know the true base level of RLS before they decide if you need meds. Some people have iron infusions at this stage and their RLS disappears but most will need meds.

Withdrawal symptoms even with opioids are utterly brutal.

RLS-UK sets out what you can expect. Look at the withdrawal schedule under Useful Resources.

If you can't stand the suffering, demand that your doctor prescribes an opioid to help and /or gabapentin.

[Bloodhound669 in reply to Joolsg]

Seems all everyone wants is to throw money after bad science. My doctor, as incompetent as she is, will NOT prescribe opioids as the V.A. has strict policies. I did find some left over oxycodone of my wife's that I may start taking for a few days if they work. I have a video conference with her on Wednesday and I'll see what she has planned. I gave her the literature from the Mayo clinic but I don't know if she has read it.

[Bloodhound669]

BTW! All I see or hear about these "Experts" is that they want an exorbitant amount of money, get you hooked on a drug and then you wind up paying for life. Sounds real legit to me.

[Carpetbagger in reply to Bloodhound669]

I'm in the same position. Have just managed to come off pramipexole a few days ago. I think I was a bit optimistic and thought I could manage a fairly quick exit because I had only been on it six months and a .088 dose. However, the restless legs never stopped since so no sleep. Exhausted walking around. I have been given clonazepam to take when I stopped pramipexole. My old drug which they've put me back on. When I asked the GP for something to help me come off pramipexole she said the had never heard of any withdrawal symptoms on that drug! Why don't they get their heads out of the sand! I've taken a small dose of clonazepam but so far with no effect. I shall take a bigger dose before bed in the hope that I may get some relief. I'm fearful that being on a DA has ruined success with any other drug.

[Bloodhound669 in reply to Carpetbagger]

Sorry to hear that you are going through this same thing, it's insidious. Seems that no one knows enough about this ailment and the ones that do want your money and your possible new addiction. Lot's of money exchanged hands over the years to make pill pushing doctors rich rather than the merciful angels they are made out to be. The lack of knowledge among GP's is astonishing. We, the sufferers will always pay the price for their incompetence it seems. Here in the U.S. they want to give these people free education, ha! They don't learn enough when they pay now. Anyway I would just do as Sue suggests all the time, if possible, her ideas seem to garner a following of believers. She is concerned, I don't know if she is a sufferer though. Only one afflicted with this can know what it really does to you. As for clonazepam you are lucky that they will prescribe this to you, I hope you have success with it. To get clonazepam from the V.A. I had to go to the psychiatric department where they refused to give me anything because my MD wrote that I have Sleep apnea, which I don't. Lot's of misinformation there. Sad story I know! It would be funny if it was someone else other than me. The remedies are here somewhere, I can feel it, you just have to cherry-pick until you find it, I guess.

[SueJohnson in reply to Bloodhound669]

I was put on ropinirole and increased it to the maximum dose over a short period of time and begged for more because I was suffering from augmentation so Yes I was a sufferer, Luckily I found a good doctor and my RLS is now controlled by gabapentin. I am retired and decided to learn everything I could about RLS and pay it forward by helping others.

[Bloodhound669 in reply to SueJohnson]

And a fine job you are doing. Thank you. IF I can get Gabapentin I will surely do so. If I recall it wasn't a drug that they provide. We'll see tomorrow. If she says that either of the R drugs is all I can get I will tell her adios.

[SueJohnson in reply to Bloodhound669]

There's also pregabalin which works the same way.

[Bloodhound669 in reply to SueJohnson]

Thanks I'll see about that one also.

[Joolsg in reply to Bloodhound669]

This is a UK based help forum. In the UK, our healthcare is free. Most of Europe also has free healthcare. I do feel sorry for patients in the USA who end up bankrupt paying for healthcare.So there is no incentive for our doctors to give us any particular drug. We pay a flat rate of about $150 a year for ALL meds, whether they cost $1 or $20,000.

And over 60s pay zero.

The doctor will usually give the most suitable drug for the disease.

And anyone with severe, refractory RLS will have to take meds for life. As RLS is incurable, it is similar to diabetes or MS. We need meds for life.

The experts choose to prescribe the most suitable drugs. And that often means low dose buprenorphine. Which is dirt cheap in UK and Europe.

[Bloodhound669 in reply to Joolsg]

That's all good. We have Medicare and every State also has individual State health programs. Prescriptions are usually at a minimum (about $15.00). Granted any major affliction can bankrupt you here and that's a travesty. I personally am under the Veterans Administrations care and my prescriptions normally are around $5.00 ea. per month. However, the V.A. will not prescribe any type of addictive drug or any drug that can enhance an addictive drug. I feel that the drug companies, in their pursuit of the all-mighty dollar, don't even bring to discussion the need for some drugs (orphan drugs?) and that's why most doctors don't know much about RLS. The world needs a discussion about United Healthcare, however the powers-that-be always poo-poo the idea. I know that it would alter the whole structure of things here.

[Joolsg in reply to Bloodhound669]

The opioids used for RLS do NOT cause addiction unless there's a history of abuse. They do cause dependence, but so do all RLS drugs.I wish the VA would read the research and evidence.

Dr Winkelman's opioid study is in its 7th year and the 500 participants have not developed addiction OR tolerance with no increase in the original dose.

[JustVisiting23 in reply to Bloodhound669]

Unfortunately, most of the medications we use for mod-severe RLS result in physical dependence. I dare say it’s a trade-off worth relief from this terrible condition.

[Bloodhound669 in reply to JustVisiting23]

I have a video conference with my V.A. Doctor tomorrow. I have no clue what she will do or say. She did mention either Ropinirole or Rodigotine, as she mentioned one or the other on my last visit. I think I would want gabapentin if she can prescribe it.

[SueJohnson in reply to Bloodhound669]

Don't take ropinirole or Rotigotine. They are dopamine agonists like pramipexole and don't let her tell you Rotigotine is less likely to lead to augmentation. That has been disproved.

[CarnivoreTony]

Can you get on Methadone?

[welschrispy]

Dear Bloodhoun!

Well done,!!! you went cold turkey of pripexole.

I did the same last year at this time. I walked all night, swam in the ocean found lakes waybackin the jungle. (we were in Mexico) I also carried a Micky of spiced rum for emergencies. it took about one month before I could sleep again. it was hell. the 4hour bus ride to PV was the end. I clung to a rail and tried not to howl. I had been taking 6mg pramipexole for years.

however I am writing this to encourage and support you. I AM also 76,and I have COPD You will get better but it will take awhile. TAKE careful note of what folks say on this platform. THESE people know everything and and most doctors know zip abut rls.

[Lola43]

oh god i’m so sorry to hear this. it’s exhausting with RLS and doubly exhausting battling with a Doctors every single day!

unfortunately GPs follow NICE guidelines and stick to it like glue . even consultants have to follow it . I printed off every study , the MAYO clinic guidelines etc …you name it, i sent it. But they did not even look at them, because they have to follow NICE guidelines and cannot stray from that . It’s awful 😢. Because i ended up on rotigotine , with oxycodone added in, i actually developed an addiction to oxycodone. Had to go in to rehab and put on Buprenorphine , but now they want me off the buprenorphine and because i was addicted to opioids (the oxycodone) i now have printed in big red letters across all of my medical records “DO NOT PRESCRIBE OPIOIDS “ . Safe to say that i am so terrified of RLS coming back, that im refusing to reduce the buprenorphine . Flat out refuse , as it’s working well , i have no side effects and keeps me safe from taking other opioids . So as long as i have breath in my body- i will continue on the buprenorphine forever. RLS is the worst and it’s brutal when u have it 24/7 . Please take the advice here and pay privately to see a consultant neurologist. There was a recent post about a really good consultant who does believe in treating RLS with opioids . So whatever you do, beg steal or borrow money and see him. RLS is a torturous condition and a great number of us here have considered suicide due to this horrific condition. please keep us updated and see that consultant ASAP . GPS know nothing about it and have never suffered from it. If they were to have 24 hours of RLS , they would soon change their outlook. sending you positive vibes, you will find relief and you will seek help. unfortunately it costs money and we have to fight . But you cannot put a price on quality of life …and sleep

[sigurdur]

This will take some time, so if your doctor doesn't want to help you, then get some kratom. Just be careful as it is addictive. Keep doses as low as possible. It works well for coming off pramipexole.

[TimeEnd]

For all fellow RLS sufferers: I have been on RLS drugs for over 40 years now. Side effects from DAs? Oh, yes. Emergency room visit due to pramiprexole, augmentation by the others. The other drugs, I couldn’t even handle. Carbidopa Levodopa worked for years, but depleted my body of B6; could have died from that alone. Accidentally stumbled across research article proving that. No wonder I had other health problems!

By God’s grace, I have found that Kratom, an herbal remedy, works quite well, no prescription, reasonably inexpensive, try website club13.com (US based). Get yourself informed about this option.. Their customer service is quite helpful, too. I do have some trouble with an active mind when I’m taking it and trying to sleep, and I’ve found that skullcap tea right before bed takes care of that.

I wish you all well—and right now, especially Bloodhound.

[Bloodhound669 in reply to TimeEnd]

Thank you for your wishes. Will see tomorrow what next. When time permits please tell us some more about what this Kratom does to you and what drugs it is replacing. I'm all ears. Also: I have a very active mind that kicks in at bedtime, always have. I think it's a way of keeping me awake as some sort of defense mechanism or something. I've always fought sleep, which doesn't help this condition I'm sure. Does skullcap tea really help this?