Medication rls

[Harley247]

Hi

I have suffered severe rls for 11 yrs now,have been on requip and pramipexole over the years,started very low on requip as all do,and recently was up to 4mg,I'm now suffering augmentation,so,I took 1mg of requip earlier in the day,and 3mg at night,worried I was up to my max dose,I done some research and saw that the next step could be requip xl.my doctor has put me on 4mg of requip xl,which does help and keep afternoon rls and evening symptoms at bay,but as slow release I'm not getting enough of the drug to get me through the night,so still suffering on trying to sleep,so I read a post saying that an immediate release requip can be added at night to get me through the night,so,I spoke to my doctor to order some immediate release 1mg,and was told I'm on my max dose for rls which is 4mg,totally understand that,but,was prescribed 0.18 pramipexole and told to take 1 or more if needed at night together with 4mg of requip xl.to my knowledge,that's not right to mix the drugs as they are basically the same anyway,does anyone else take the two drugs together at night?why is it you can't take an extra dose of requip immediate release to get you through the night? You will hardly overdose on one more dose,why mix the drugs? Can anyone advise me on this.thanks.

[John_naylor]

I used Tramadol to get me thro' the changeover between dopamine agonists after augmentation and for over a year am on 100mg Tramadol alone. Occasional disturbed night but usually sleep like a baby! Hope you could get relief from this too.

[nightdancer in reply to John_naylor]

That is the RiGHT idea!

[Pippins2]

Once you have augmentation from a dopamine agonists you need to decrease aiming to get off the med. Increasing (adding in more dopamine ) is a recipe for disaster I am sorry to say . You need to get a strong painkiller such as Tramadol to help you get off the Requip. Adding in any extra dopamine whether it be Requip or Pramipexole is not a good idea and the doctor who has prescribed it unfortunately does not understand augmentation so I would suggest that he educates himself on this or you find a new doctor who will help you to

wean off the Requip /Pramipexole. ..good luck. Pipps x

[nightdancer in reply to Pippins2]

Pippin is exactly right, "recipe for sure disaster"

[Kaarina Administrator]

Hi Harley,

RLS-UK has a section on their website entitled For Professionals. Perhaps your doctor should be pointed in that direction to learn something about augmentation:

rls-uk.org/#!treatment-for-...

Kaarina

[Beckonwood]

What an awful thing to experience what you are experiencing. I went off Mirapex and was taking quite a bit of it this past November. I have to say I cried, paced the floors but did it cold turkey. It was awful, but I am so glad I did.. I had been on Mirapex for about 15 years and kept taking more and more and my symptoms kept getting worse and worse. I found out about augmentation here on this site. I tried Horizant for about two months and got so depressed had to stop it. I take Percocet and that really helps. Now that is the only thing I take for the RLS and it really helps. I have been taking it for about 12 years and am not addicted to it. From my experience you just have to ride it out. If you can get your doctor to give you some pain meds to help you get through they do help. Good luck

[Hidden]

My system also got used to the Requip. Was taking 1mg 4X day. Changed over to Meripex and went back to my initial Requip dosage (.05mg 4X day). No problems with the changover and I am still on that dosage 1 year later. No side affects, etc. Before I changed over to Meripex I took an extra 1.0mg of the Requip if I was having a bad night. No problems. I'm not advising you to go against your doctor's advice, but sometimes we have to use our own common sense. I agree, 1 more pill isn't going to make you overdose. I had no side affects when I did that.

[Harley247]

Hi guys.thanks so much for your replies very helpful,biggest problem is,would be getting the doc to prescribe strong painkillers I guess in order to get off the dopamine argonists.but,does anyone know if taking 4mg xl requip and 1x 0.18 pramipexole together is ok? Does anyone else take that sort of dose of both Meds at the same time? Just seems odd to me,can't seem to find anything about it anywhere on the net !! Thanks

[nightdancer in reply to Harley247]

RARELY, and and it is BAD idea, see my other comments.

[nightdancer]

To be real honest real fast, if you were augmenting on the quick release Ropinerole/Requip then you are going to augment on the same dose whether slow release or not. AND, to add pramipexole to the mix is going to make you augment even more, and you are now in the dopamine "merry go round". 4 mgs of Requip is actually too high now, for a recommended dose, 1-2 mgs of Requip is supposed to be the limit now. But, piling on more dopamine is not going to help you if you are augmenting, it will add fuel to the fire as they say. have you asked about any other med to try. Time to wean down and switch it up. This is common to happen, but if you are adding the pram to the Requip it will just be more trouble down the road. Go look at the RLS-UK Foundation's web site and see what other meds can be tried. or are you in the US?

[Harley247 in reply to nightdancer]

Hi thanks for the reply,I'm in uk,I think you are certainly right,I'm on a downward slope,problem is,it's down to my doctor,which drugs I take I'm afraid! I do realise the general gps are not up to speed though! They will stick to the rules as you would know! Most people have to me to substitute the requip/pramipexole for tramadil but I know I will struggle to get that from my doc !

[nightdancer in reply to Harley247]

Well, you need to come up with something different. I am in the US, and I do not shut up until I get what I want, but I know it is different in the UK, Still no reason fro a doctor to be that ignorant about augmentation that treats RLS!

[Pippins2 in reply to Harley247]

Harley I am in the UK too.Targinact is now actually licensed in the UK as the first opiate specifically to treat RLS so maybe you could tell your GP that. It might persuade him/her to prescribe the Tramadol. Failing that ask for a referral to a Neurologist preferably one who specialises in Movement Disorders or a Sleep Doctor. X

[Harley247]

Thank you for that info.i will try that for sure.glad I've asked questions on this forum you guys are very helpful.appriciate it !

[Windwalker]

I take 8mg time released a day just to keep the symptoms at bay enough to sleep a little. About 5 hours in 24' My wife can sleep 8 or 9 hours, a luxary i have not had in 40 years of RLS.

[Harley247 in reply to Windwalker]

Hi really,I thought the requip xl was only for Parkinson's to be honest,but,I'm using it for rls too,is that the only Meds you use for this condition? And how do you feel on that,falling asleep?drowsy? Etc.my wife can also sleep 8 or 9hrs a night too,sickening eh?

[Windwalker in reply to Harley247]

Harley247

I also have fibromylgia which can prevent sleeping a long period. I take gabapentin at bedtime and one 5/300 vicodin. I sleep 4 or 5 hours out of 24. I was never a good sound sleeper and am envious of those who can sleep 8 or 9 hours. As to how I feel using requil xl? I feel normal with it, and I go into my act of jumping and jerking and the weird sensations of weakness and compulsion to move, if I don't take it.

I am good in the morning but if I take no Requip xl, I am a basket case by noon, so I start early at 10AM for the first dose.

Requip was developed for Parkinson's, but there are no spicific drugs for RLS, so doctors use ''off label'' drugs to treat us. Perhaps one day a drug will be developed just for RLS, but until then we have to use whatever is available, that works. We are 10% of the world, so a drug developed for us would surly be profitable.

[Hidden in reply to Windwalker]

Windwalker you are probably said before and i havent noticed. but you are taking 8mg of Requip.?? And taking a dose early in the morning..? Are you sure you are not having augmentation..?

[Windwalker in reply to Hidden]

What I know for sure is if I take the med at regular intervals of about 4 hours, 10 AM---2PM----6PM and 10PM, I keep that evil feeling away and if I try to stop one dose I spend about 4 hours jumping and jerking with pain in my knees and weak legs so bad that some times one leg or the other will collapse and that 24 hour cycle I might get 3 hours of really fitful sleep and then so wide awake and jumping and jerking that I am like a person with tourettes syndrome, but my neurologist says I just have the worst case of RLS he has ever seen. I slept over twice in his sleep center and never went sound to sleep because they held back enough medicine to make me do the jumpy jerkie.

Augmentation according to the net definition is you take the medicine and immediately go into the condition. My neurologist wants me to cut back on the medicine but he doesn't have to live in my skin and I do.

[Harley247 in reply to Windwalker]

Fair point,it must be horrendous,can't imagine it! Hope I don't get that bad,and certainly wish you all the best with it,and hope you find an answer,they are talking about the new drug for rls called targinact on the forum,may well be worth a go for you!!

[Hidden in reply to Windwalker]

Your RLS is seen as the worse to be seen, because, quite frankly is because of the high dose of the Requip you are taking. 8mg of Requip is what a Parkinson's patient would take, not some one who has RLS. Who ever prescribed you to keep upping your dose to 8mg didnt know enough about RLS to stop at 4mg that used to be the top dose to take for RLS. If that didnt work back then, you should have been weaned off it and tried something else. Just dropping one dose will of course send your RLS nuts beyond nuts, as your body is used to all that dopamine, your dopamine receptors object to the one dose being taken away. Your neuro now saying he want to cut back is correct. BUT, you would need alot of help and support from him to do that. A strong pain med, probably for you it would mean morphine as your dose of Requip is so high. Most can manage to take Tramadol. Its still not easy to detox, but many have done it and been thankful that they have. Augmentation in the sense of RLS, is that the dopamine med you are taking starts to turn against you, your symptoms start earlier in the day, starts to effect other body parts that you never experienced before and your symptoms can become worse. Upping the dose will work for a while then its back to your body wanting more dopamine and so the cycle goes on. The only way to stop all that is to get off the dopamine med.

[Harley247 in reply to Hidden]

It is quite obvious Elisse you are very knowledgeable on this condition and the Meds prescribed for it,as are a lot of people on this site,which is very helpful,and from most of the replies I've had regarding augmentation,they all say the same,get off the DAs by use of tramadol or the new drug targinact.as I've said,I was on instant release requip 1x1mg at 3pm then 3x1mg at night,which was working,but I decided to ask my doctor for requip xl as I was recommended to do,as I thought the xl version would last 24hrs and keep symptoms of all the time,trouble is,it doesn't quite keep it off at night when going t sleep,and I guess the reason is..because it can't possibly give 4mg all day long as I would be flat out! I suppose it gives about 1mg every 6hrs at a guess,true? And the fact is don't cover me at night is because there's not enough Of the drug in my system,because 2or 3 x1mg instant release used to knock me out,so why change it you say? True,sort of wished I hadn't but needed cover for earlier symptoms,and I though better to have a steady flow of the drug rather than the ups and downs and highs and lows of instant release! Right now,1x4mg xl plus 0.008 pramipexole is working,so,reluctant to change Meds,sort of,if it ain't broke don't fix it! But,my question is....obviously I will get augmentation again because I've upped the dose,so the next step is opioids.i realise that now,but,even if I can talk my gp into prescribing them,do you take them and wean down until you are completely off them and only on opioids? Or,do you carry on with opioids and go back to the start dose of requip? Maybe you could advise,how you are supposed to do this,also,after researching tramadol and targinact the side affects look pretty scary!! Probably worse that dopamine agonists!!! The other problem is,I don't like a tipple from time to time,and have found its still possible with DAs...been doing it years,but,not overdoing it!! But,tramadol and targinact if a definately no no.but,I guess what's more important,alchol or rls symptoms at the end of the day!!! I've also found out now,by calling a Parkinson's nurse that they now know,requip xl 24hr drug,barely lasts 12hrs !!! If you,or anyone else on this forum has any input on this,I would be very grateful.thanks.

[Harley247 in reply to Harley247]

Sorry,I mean I D0 like a tipple from time to time !!!!

[Harley247]

Thanks for the info,very helpful.appriciate your comments.it all adds to knowing which way to go!!

[Harley247]

By the way,the wife slept 12 hrs last night.wish I could at times.............

[Harley247]

I was wondering about 8mg of requip xl I Believe too high for rls,so I'm told !!!!