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Restless Legs Syndrome

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pramipexole - augmentation

pineapple_head profile image
24 Replies

I have had RLS since I was about 16 yrs. I coped with it but in the last 3 years, it is interfering with my sleep. I keep waking up with the dreadful sensation to move my legs. I stretched and toss and turn.

I take paracetamols but that only calms me down for a couple of hours. Ialso have inflammatory arthritis and I take etoricox (a strong NSAID) now every night so to be able to sleep.

I have seen a neurologist today and she has prescribed pramipexole. I have mixed feeling and, to be honest, I'm pretty scared that it could lead to augmentation.

I'm pretty scared.

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pineapple_head profile image
pineapple_head
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24 Replies

Hi i was on Etoricoxib for a few years, but as far as im aware, they are supposed to have stopped using it because of links to heart and stoke problems. Although it did help me loads as far as arthritis was concerned.

mhra.gov.uk/home/groups/pl-...

Kaarina profile image
KaarinaAdministrator in reply to

I am still prescribed etoricoxib, two a day and have taken it for years. I am aware of the side effects. What does one do? This is for arthritic aches and pains and yes it does help immensely. I have had to come off it prior to ops and have I noticed the difference!

in reply to Kaarina

Me to Kaarina, i do miss it, and the different is very noticable, but what can you do if the doctor says no :( i understand why though.

pineapple_head profile image
pineapple_head

I live in the UK and etoricoxib are prescribed over here. It's another drug with similar name that has is no longer prescribed and its called rofecoxib.

Do you have RLS? If so, what do you take, if anything?'

im in the uk also and my surgery dont prescribe it anymore, ive almost beggesd to have it back but they wont prescribe it for me, now im just on cocodamol not even allowed anti inflamatories now as ive had a stroke in the past, so im kind of stuck, yes i have rls, im taking mirapexin ER (pramipexole) and its ok but not working as well as it did, so my doctors letting me use the neupro patch for a month, to see if the mirapexin will kick start again

pineapple_head profile image
pineapple_head

all this is so scarry. I had to get used to taking strong drugs because of RA. I'm on Leflunomide and doing well on it, except that I've started to have an allergy. I've got rashes all over and waiting for my Rheumy to get back to me. Meanwhile, I'm on antihistamines and cortisone cream.

Now with this new drug, I'm not happy. Fortunately, the hospital didnt have the tablets so waiting to get them on Monday or Tuesday. Meanwhile I worry about it.

Did you develop any urges to shop and gamble with the pramipexiole?

in reply to pineapple_head

Leflunomide was hard on my liver. I have RA as well as RLS.

Seems that the two go hand in hand my Rheumy told me.

I take pramipexliole. None of the urges have reared their ugly

heads. I've been on it for more than a year. I take maximum dose.

It doesn't bother me to take my RA drugs along with pramipexliole.

I no longer handle the financing in the family. My husband does

that and he gives me some cash for whatever I need. It's safe

for me to let him do that so I won't test temptation of gambling.

pineapple_head profile image
pineapple_head

By the way, good luck with the patches. I really hope they work for you.

no, didnt get any urges, just a bit of weight gain, i have osteo arthritis so different treatments for me, but cant start the patch yet, as doctor gave me to high a dose, so waiting for the lower patch now as it has to be ordered in.

Just because a side effect is listed, doesnt mean you will get it, so dont worry to much about it

Tiredparent profile image
TiredparentRestless Leg Syndrome

I'm on a low-ish dose of pramipexole (2 tablets a day) but no problems with gambling, shopping etc. I did have augmentation and it became less effective so added Neupro patches which have worked very well for me for about 2 years. Good luck!

pineapple_head profile image
pineapple_head

Thank you everyone for your encouraging comments. It is very kind and it is appreciated.

Mispiernas profile image
Mispiernas

Pregavalin is helping me at the moment and sleeping better makes a difference. I am learning to live with less sleep and periods of feeling sleepy. One big problem for me is trying to stay away from shopping. I am not always very good and it becomes a problem. The thing I buy the most is plants for the garden. It's something that always makes me feel better and I do have a beautiful garden to tender and enjoy. I take tramadol during the day maybe twice and when I do not take it the RL is worse at night but I mainly take it for fibromyalgia. I hope some of it helps.

thedragon profile image
thedragon in reply to Mispiernas

I have that shopping problem with the garden too but it's nothing to do with medication ha ha ....x X X have fun in the sun!!!

thedragon profile image
thedragon

Good luck with your meds pineapple. It's so depressing trying to find the one that works !

helygen profile image
helygen

Hi Pineapple_Head

I've had RLS all my life (I'm in my mid-fifties) but it was only diagnosed/recognised in the last twelve months.

I've been taking Pramipexole since January, and it's been an absolute godsend. I've had none of the side effects listed (but we're all different, so you need to keep them in mind) but I tend to view those lists as the drug companies' insurance against litigation rather than health warnings!

I take between two and four tablets a night, every night - dose depends on how bad I'm feeling - and they've massively improved my quality of sleep. I also take them during the day if needed, with no detrimental affects.

With most prescribed medication, it's a case of trial and error, so I say 'give it a try' - if it doesn't work for you, then ask your GP for an alternative.

Let us know how you get on :)

pineapple_head profile image
pineapple_head

Thank you all for your encouraging comments. I feel now more confident to give it a try. I'll give you some feed back. Thank you so much!

in reply to pineapple_head

Just so you know, there is a slow release version of pramipiexole, so you only take one pill a day, im taking this and i quite like it :)

in reply to

All side effecte;s are listed, but that does not mean you will get them, best to do your own check's though, as no two of us are the same with meds, pramipexole has only given me a little weight gain, as i told you earlier.

Rubylane25 profile image
Rubylane25

In Canada and the United States there are huge class action lawsuits pertaining to this drug. Pramapexole which is another name for mirapex can cause obsessive Compulsive disorder. I have mentioned this before on this site. It increases the dopamine in the front lobule of the brain the part that controls risk and reward. Most particularly it evolves into increased sexual behaviour to the point where people become addicted to porn, prostitutes etc. It is especially inherent with gambling. It triggers the part of the brain that wants risk then reward. I am currently involved in a major lawsuit here in Canada and there was one already in the USA.

I have a friend who has been on it a year now and literally has become obsessed with shopping. It works great for RLS however make sure you research this aspect of the drugs side affects. Go in google and Type in Mirapex or pramapexole. Requip also does the same thing. Just type in gambling and any one of these drugs. If you do not gind anything let me know and I will find the info for you. Better to be safe than sorry snd find out in a years time you have lost your life savibgs gambling.Be very wary. You can ask me for any smount of info on this. My class action suit is nearing its end and it has been going on for approximately five years.

nightdancer profile image
nightdancer

When starting nay new med for anything, it's always important to know what the side effects MIGHT be, and they have to list everything, as someone said for "litigation" purposes to "cover their butts". The thing I picked up on in your telling of your story is that you are talking antihistamines. With RLS, anti-H's are mostly on the "no no" list. Diphenhydramine, the main ingredient in , for example, Benedryl is one of the top over the counter triggers for RLS that exists, and it is many over the counter sleep meds.. rlshrlp.org has a list of "drugs and foods to avoid" on the treatment page. The more knowledge you have, the less scared you will be. RLS is not anything to be scared of, we have to get mad at it and make it "afraid" of us. As my dear departed friend Jill Gunzel (the RLS REBEL). used to say "Knowledge is power and the more we know the more control we have over the 'beast'" So, we have to read all the reputable wen sites ask questions,. talk things out and so on. On Pramipexole, I know people from ones who have gained 60 lbs, lost 60 lbs, developed gambling problems, not developed any side effects at all, so it is all trial and error. You have no idea until you try it. Good luck! Oh, and what kind of antihistamines are you taking? that is REALLY important since your RLS is worse.

pineapple_head profile image
pineapple_head

Thank you nightdancer for your comment. I'm at work and I don't have the antihistamine with me but I will check whether they are the type that I should be avoiding.

I am not suppose to stay on antihistamine for long. This is only to see me through till Tuesday as my Rheumatologist will be alerted that I'm having an allergic reaction with the Leflunomide.

If I'm advised to continue with the antihistamine, if the one i'm taking are the one to be avoided, I will ask for the alternative.

The only problem with the RLS is that I can't stay asleep because my legs are twitching. I have taken one 15mg of codeine in the last 2 nights and, this has helped to go back to sleep. I understand that this is not a long term solution because the codeine will lose its effectiveness and will need increasing.

I have not yet started the Pramipexole because the chemist at the hospital did not have any in stock. In a way, I'm happy because it will give me time for this to sink in as well as getting this rash sorted.

Pileus profile image
Pileus

Hi, I've had RLS since a child, now in my 60's. Tried Pramipexole. It certainly reduced RLS (you need to take it two hours before it works) BUT 6-7 months later augmentation kicked in and they ceased to work completely. Coming off them was a nightmare - cold turkey for three weeks, worse than it ever was. I take Gabapentin now without side effects. It does take the edge off RLS.

pineapple_head profile image
pineapple_head

@ Pileus - What dosage were you on when on Pramipexole?

pineapple_head profile image
pineapple_head

@ nightdancer - The antihistamines that I have been prescribed are Cetirizine 10mg. Are these OK?

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