Pramipexole has made RLS worse

[Crazyleggs]

I've had RLS for more then 50 years. 6 years ago my doctor put me on Pramipexole It worked at first but now it worsens the symptoms I have it on and off day and night. I need to get off pramipexole but doc wants to increase dosage or give me a stronger med instead. I'm feeling is not to do this. How can I get off Pramipexole There must be a better solution. Appreciate any opinions

[Hidden]

Oh dear. You are augmenting. Please do not increase Pramipexole! Pramipexole is a dopamine agonist, which are linked to this side effect. I augmented on Pramipexole 2-3 years ago, after 4 years of being on it!

A med. that is not a dopamine agonist and opiods are better.

Others will be along with more advice.

If you don't mind me asking, what are your symptoms?

[Madlegs1 in reply to Hidden]

As Jesse has advised. Depends on what the stronger med is being offered.

Possible alternatives are Gabapentin or Lyrica. Or stronger still would be Tramadol or Oxycontin- but a gp is unlikely to prescribe the opiates.

The Neupro patch might be the only Dopamine agonist medication to consider.

But first you need to get off the Prami. Go down by 0.088 a week and at the end or before you will need strong medication to cope. Opiate or Clonidine and Diazepam are all helpful and absolutely necessary.

Check out Augmentation on this site and on google.

Good luck.

[Crazyleggs in reply to Madlegs1]

You said opiate was necessary. Is hydrocodone acetaminophen a possible?

[Madlegs1 in reply to Crazyleggs]

Yes- that is an opiate plus paracetamol - which potentiates the first .

Only good if it means a lower dose of the opiate part - and also limits your own control of the Acetaminophen- which can be damaging if overdosed.

[Crazyleggs in reply to Hidden]

Hi Jess My symptoms are mostly painful legs with movement both day and night now. The right leg draws or pulls and my legs burn, tingle won't relax. Sleep for about 2-3 hours, then I gotta get up because legs keep moving. I can't even sit down for a meal. Going out for dinner or going to church I have to be near exit so I can get up and walk. Walking helps, hot baths help and rubbing creams on legs helps but just for short time A trip driving in the car that lasts more than an hour triggers it Lots of anxiety sweeps over me too Hard to discribe.

[Hidden in reply to Crazyleggs]

Yep, hear you there (with the indescribable feeling and the anxiety). I hate how every action done only provides short term relief, don't you? We need a magic pill that will make this disappear forever. I'm so tired of having to work at feeling normal.

I take hot "baths" too (use bucket, though, since I don't have a bathtub)

Let's see...

have you tried support stockings? The tightness helps calm my leg movements.

What about an electric heated massager? This helps

Do you have a pool with hottub nearby? I put my legs right up to the jets. It feels wonderful!!!

Have you tried rubbing magnesium oil on your legs? It does wonders for my pain. Or epsom salts? Both itch, but that is a sign of the magnesium being absorbed. An itchy feeling somewhere is a sign that the cells in that area are lacking in magnesium.

The tingling you describe: Is it like pins and needles? I was recently prescribed 600mg Ibuprofen and told to take 1000mg of Paracet to take every 8 hours. It helps! BUT...be careful. You don't want to take over too long a period as they can cause harm (just like everything else -- man, how I hate that!!).

Have you had your ferritin levels checked? Should be higher-than-normal for RLS patients. I think greater than 100, but can someone check me on that? Madlegs? You're good at advising. Am I right?

Hope this helps

Take care of yourself,

[Crazyleggs in reply to Hidden]

Well I am gonna go get magnesium oil today. And I will have ferritin levels checked. Thank you so much fir your input.

[Hidden in reply to Crazyleggs]

If you are augmenting then no matter what you take or use it wont work, the augmentation is too strong to have anything else stop it.

[Madlegs1 in reply to Hidden]

Yep- 100 would be good.

[Hidden]

Just to expand upon what Madleg says about the Neupro patch:

Yes, it is the dopaine agonist that carries the least likelihood of augmentation. BUT (there's always a "but"; we need something without the "but") the higher the dose the greater the chance of Augmentation (wonderful, huh?). I've been on 4mg of the Neupro patch for a month now and started Augmenting again last week (sigh...). I have learned so much from from this website, and one of those is that it is better to be on a very low dose of multiple meds. than it is to be on a high dose of one med. for RLS patients. My doctor should've known that!

I'm now trying to get into see my neurologist to remedy my situation, but getting into see him is proving to be harder than it should be.

[Hidden in reply to Hidden]

Yes there can always be a but. when you have augmented on a DA already then just stopping one and starting another you are most likely to augment again. You need at least 6/12 months without taking ANY dopamine med. then you have a better chance of being able to go back on a dopamine med then keep the dose to the new recommended dosage to have better success the second time round.

[Hidden in reply to Hidden]

ummm..... ok

Not the bad guy here. I'm not a doctor; my neurologist is. He is the one who should have known that.

[Hidden]

Hi Crazyleggs,

Same for me. I was on Pramipexole for six years. I augmented like crazy on it but did not know how to stop. In 2015 i was suddenly seized by vestibular neuronitis while working at a dance festival far away from home. I didn't know what came over me - even thought the Pramipexole fucked up my brain - and had to stop all meds simply because of the nausea and vomiting.

Rehab took three months, the lack of sleep weakened me to the bone. After coming off I was forced to keep my life simple: a strict daily program and avoid all sorts of stress. My program is based on a conforming fitness training. Ik must me careful not to get muscle pain, that is also a form of stress. After that i work for three hours and stop alle action at five. No phone, no computer, just relaxing and preparing myself for the night.

It was like reprogramming the body and nervous system. It worked for me. I am restricted in my actions (I love to work out) and behaviour. When i cross my own boundaries now I will be punished for that at night. The RLS-attacks don't strike me by day anymore, if they happen it will be in the night. I got rid of the side-effects of Pramipexole.

I must say, due to a change in my immediate surroundings (nightly nuisance by growth of the hotel and catering industry ) i am destined to take a benzodiazepine. I can live with that. I know i depend on Nitrazepam but it never increases the RLS. It is even a muscle relaxer.

One step at a time, to come off the Pramipexole by getting a sudden infection was a blessing is disguise for me. I am rather hooked on Nitrazepam than on Pramipexole.

One more thing: my RLS seems to be more 'touchy' when the weather gets hot. i assume heat can be a stressful experience for my nervous system for i am used to cold. I prefer to have cold feet, even cools them under the shower in summer. Nevertheless: this is all personal experience and not one-to-one applicable for fellow-sufferers...

Wishing you wisdom and all the best!

[Crazyleggs in reply to Hidden]

Hi ankezelk. How did u kick the Pramipexole? My doc wants to increase but I said no it has made my RLS worse

[Crazyleggs in reply to Crazyleggs]

Were you hospitalized??

[Hidden in reply to Crazyleggs]

Hi Crazyleggs,

No I was all alone and i was at home. I had to just stop because of the vomiting due to my sudden Neuritis. Neuritis causes an enormous dizziness like being seasick times 1000. Ther was no other option for me than stopping cold turkey. When I was less dizzy I walked, walked and walked. I knew I had to press ahead after the first days for i had augmented a lot since taking Pramipexole scaled up from 0,088 mg to 0,325 mg.

Like I said coming of took three months. All my walking together with lack of sleep caused injuries. A personal trainer at my gym asked me if i got enough protein. Well, no. I am vegetarian and don't like cheese or nuts. Ans i am rather skinny. From then on i took protein shakes before sleep (I do workouts on daily base and walked an hour in the afternoon) and since then my sleepcyclus got better. thanks to the shakes or the three months coming of? It doesn't matter. I am finished with Pramipexole!

Unfortunately I had to start taking sleeping pills when a café opened just below my sleeping room...

So it can be done, coming of alone but this was an exceptional circumstance. However, i do not think that lessening the dose you are taking is an easier way. Still, I am not a doctor.

And i remember that in earlier phase - still on Pramipexole - i was troubled in the evening (in rest) by sudden stitches, painful repetitive prickles in my feet or legs. That used to be the precursor of a RLS-attack. Those painful repetitive prickles totally disappeared with the coming of Pramipexole.

Hope i informed you well with my experiences?

[Crazyleggs in reply to Hidden]

Thank you. for your inspiration Ank. I posted yesterday I was able to make it all day without the Pramipexole and then in the evening I took my normal dosage of 2 pills. I think I will wean myself off slowly

[AAustin98]

I had a doctor once who sounds a lot like your Dr. He told me (before he even did a sleep study) that he didn't think I had a sleep disorder. He thought I was depressed instead and prescribed Effexor XR. Within a few days I experienced severe and unrelenting muscle spasms in my head, neck and shoulders. I called the Dr and told him I was having an adverse reaction. He said "No. You need an increased dosage or you will get much worse". I finally found that reaction in NIH Medline and stopped the med. Within days the spasms stopped. Listen to your body. Do research at drugs.com, NIH Medline or other sites that list side effects and drug interactions. Drs are not able to keep up with all that info.

[johnnie18]

had restless legs since my twentys..I am 63 doctor gave me gabapentin,first thing that every worked...

[Kay9Jo]

Hello Cazylegs I have serve RSL which makes me very depressed I'm on 6 Pramipexole a night I am now trying to wean myself off them as they made me addicted to eating I am never full I've been on them for quite a long time.

I now think they don't do much my body has got used to them I am now down to four I've just cut out one tablet each week and I have been ok .

I'm just concerned about how bad my RSL leg will become once I've got down to none and everyone with RSL knows how debilitating this condition can be.

I live in hope that one day their will be treatment that will work but not with this sort of medication

[Crazyleggs in reply to Kay9Jo]

Thank you Kay9Jo. For years doctors denied there was a problem having the symptoms we described- then they started calling it restless leg syndrome- now finally its tagged with a more dignified label Willis-Eckbomb Disease. I can't imagine how slow the progress will be to have a magic pill that works to give us some relief. Probably not in my lifetime. Sigh But because of the augmentation symptoms of Pramipexole I will never put another prescription drug in my mouth until I research the heck out if it first.

[Kay9Jo]

Hi Cazylegs thank you for your reply

[Crazyleggs in reply to Kay9Jo]

Hi Kay9Jo. I didn't give you the support you were looking for and the support I know you needed in my last reply. So please let me tell you my story. I have suffered with RLS for about 50 years. Not so bad at first, but with time it got worse. I tried everything acupuncture to back surgery. I started on Pramipexole about 6 years ago. My symptoms started getting worse so my doctor increased the dosage again and again. Now I was having debilitating episodes 24/7. I realized that at times within 15-30 minutes after taking pramipexole my symptoms were unbearable. If I could I would have chosen to die. Talking to my doctor and my pharmacist I then was given Gabapentin. With this medication and hydrocodone I have been weaning myself off the Pramipexole I started 3 weeks ago and am down to 1 dose of Pramipexole a day and a full week free of symptoms This is working for me. My very best hope for you

[Kay9Jo in reply to Crazyleggs]

Hi Crazylegs I've found reply helpful does the Gabapentin give you side effects and does the Pramipexole make you hungry all the time because it does me .

have you put on weight with this drug I am down to 3 Pramipexole.

many thanks

[Crazyleggs in reply to Kay9Jo]

Answer to Kay9Jo. Yes I put on weight I've only been taking the Gabapentin a couple weeks. Still weaning off the Pramipexole. Down to one pill, but now and again have to take second pill. This is probably a nutty thing to say but when I feel the RLS coming on I grab a bowl of crushed ice and chew it - walk a bit but it works some of the time. I have no idea way

[Kay9Jo in reply to Crazyleggs]

Thanks for your reply

[Sabjam63]

I feel the same. I was taking 3 every night and its not workimg. Instead it has become more painful. I started taking painkillers and antihistamine but its still rally bad. Tempted to take more but where is it going to end....