Hi again everyone, I've been on ropinirole now for two weeks and I've gone from being able to sit at work most of the morning/day without standing to work, to some symptoms in the mornings; to yesterday, standing most of the time I was at work! I had RL all afternoon as well and nothing seemed to control it. I think I'm augmenting already!
Can anyone confirm this suspicion as I'm off to the GP again today and I really don't know what he can suggest. We've tried everything except methadone, which he can't prescribe, and cannabinoids which aren't legal in this state, even if he can get federal authority for it! If this is the case, augmentation I mean... where to go from here?
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restlessstoz
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Have you been on a dopamine agonists med before? If so and you experienced augmentation from it you can augment very quickly on another dopamine agonists x
Yes, I was on pramipexole until February when I weaned off it due to augmentation which had probably been happening for at least a couple of years and my neurologist didn't pick it up! I tried Neupro patches but developed rhabdomyolisys with that. I didn't want to go back on a DA but it seemed that without it, I couldn't work! only about 2-3 hours sleep a night if I was lucky and I was 'losing' time and memories of what I was doing at work! scary.
The principle features of augmentation, I've learned, are these -
Symptoms become worse - more severe
They start occurring earlier in the day
They spread to parts of the body other than the legs, arms, shoulders neck etc.
The time between relaxing/staying still and onset of symptoms becomes shorter.
So yes, reading between the lines, it sounds like you have augmentation, again.
You'll probably have to avoid taking any Dopamine Agonist at all.
I can't remember if we've discussed Gabapentin before?
Yes we've talked about gabapentin. I was on it for 10 years and up to a whopping 2600mg a day! I weaned off it in March! I know that since then, my brain has been functioning far better and I can have proper conversations without losing words and feel like my brain is actually keeping up. However, having also recently read about it being useful to lower glutamate levels wonder if it may be useful to try it again??? I really am at a loss because we've tried everything we know of... I'm still waiting for an appointment with a haematologist to increase ferritin levels. Mine at last count about 2 months agao were 78 after months on iron supplements… haven't even had a message to say they've got the referral and that was 6 weeks ago! ?????
I've been to the doctor and after some discussion we've decided to try Lyrica/pregabalin! For better or worse. I've not really tried it before and I've tried everything else that we can get legally. I'll give it a go and see how I get on. I wanted to try potassium citrate as well but he was reluctant to start two things at the same time... I'm tempted to buy some anyway and see how it goes. So, no more ropinirole and hopefully augmentation will stop. I've also phoned the hospital and found that I have an appointment with the haematologist on 17 June! They have sent paperwork out to me but it hasn't arrived so they're sending more. That at least is a win, as long as I can convince the doctor that an iron infusion is the best way to go! More printing of studies and papers ahead.
Hi, I hear Pregabalin is more potent than Gabapentin so I hope it works better for you.
I know it's tempting to try whatever you can to relieve the symptoms so it's natural to fall into trying everything at once. The drawback if you start both Lyrica and potassium citrate at the same time (as you probablybrealise) is that if THEY work, you won't know whether it's one of them that's working, in which case which one, or is it both combined.
yes, that's exactly the problem isn't it. I'll stick with the pregabalin and hope for good things. It's a wonderful thing having help at the end of the 'keyboard'! I don't know what I'd do without the support from this forum and especially you Manerva. Your a marvel. Thank you.
It's a great forum alright. I've only used it a few months but I find it really helpful. I've used other forums I'm not that impressed with and one that left me with a bad impression. This one is impressive for the right reasons.
Not doing too well tonight! I've been jiggling for about two hours without let up. Can't sit down. I've taken the pregabalin and so can't do much else except try to accept it and not get sucked into secondary suffering!
I'm also trying nicotine gum and have found it quite helpful when nothing else seems to settle my legs. LIke now!!! Maybe I can sit down for a while and/or go to bed.
Totally agree with Manerva, one should only start one new thing at a time, or it can get confusing REALLY FAST. And, potassium is not really known for improving RLS. One has to be very careful with things like potassium. You can get TOO much, just like Vitamn D, you can get too much, it builds up in your system, so I also have to agree with your doc. Treating RLS is all trial and error, so best ot keep it simple. rxlist.com is tops as far as a web site that explains drug interactions, side effects, etc. It is not a "dumbed down site, it is the best for all general info on meds and supplements. etc.
Thank you nightdancer. I will look at the link. i guess it's almost a panic reaction to try everything at once and now that I'm calmer, although in some RL attack discomfort, i can see the logic in only trying one new thing at a time. I'm back to my GP in two weeks so will see what improvemtn has happened by then and if it gets too bad, i can always go back sooner.
I've read some of your previous posts and the replies. You have had RLS for over 15 years and you have suffered augmentation on Pramipexole and Rotigone and now Ropinirole.
You mention that you have tried all the other drugs ( oxycontin, fentanyl, gabapentin, pregabalin).
However, the other drugs will have had little effect whilst you were taking dopamine agonists and suffering augmentation.
I see that you have been advised to read all the links and posts about augmentation and you will realise that you definitely cannot touch another dopamine agonist.
You should not despair, however, because all the other drugs you have tried will probably be effective for you once you have withdrawn from the dopamine agonists. As you have been on them for, presumably, more than 5 years, stopping the ropinirole cold turkey will be very tough as your body is used to getting its dopamine hit.
I would reduce slowly with the help of tramadol ( and cannabis if you can get some).
Pregablin will start to work 3 weeks after starting the first dose, but only when all the dopamine agonists are out of your system. You mention that you had to stop pregabalin when you last tried it because of fluid build up in your legs. This is a common side effect but it often settles after 2/3 months and it helps if you avoid carbohydrates ( I see you are a type 2 diabetic and have lost 30KG in the past few years so you will know that a low carb diet will help that condition as well).
Your Doctor should not have put you on the rotigone patch after you augmented on pramipexole, nor should he have put you on ropinirole. Once you have augmented, you will very quickly augment on any other DA.
You should ask for your doctor's help in slowly reducing the ropinirole. It will be very tough and you will need to take time off work because the last 2 weeks are extremely difficult with little or no sleep. After the last dose of ropinirole, your RLS will go crazy and you will be tempted to take the ropinirole again. To stop myself being tempted to do this, I took ALL my pills to the pharmacy for disposal.
Oxycontin OR tramadol will help during withdrawal and the pregabalin will then start to help. It can take a few months to find the right combination of meds and to tailor the dose so it is most effective for you.
Sorry about the length of this post but I wanted you to know that the other drugs you have previously tried will be effective once you get off the DAs.
I hope the haematologist agrees to an iron infusion because raising serum ferritin will help the horrible augmentation symptoms as well as helping your RLS long term.
Stay strong- many of us on here have been through withdrawal form DAs and have found alternatives that work 80/90% of the time.
Thank you Joolsg for taking the time to reply at such length. The last DA was ropinirol and i have only been on it for 2 weeks. I hope that means i won't have such awful withdrawals. I managed to get of pramipexole in February so know what it might be like. I've been to bed already and had one hours sleep, now up again with legs!
i really would like to get hold of some canabinoids but they are not able to be legally prescribed in Tasmania, although the federal government can authorize it's use! I have Tramadol and have been using that throughout with varying degrees of success. At least i now know that ALL DA are off the list! I did try oxycodone when withdrawing from Pramipexole but it did little or nothing, even at 30 and 40 mg dose! I did wonder if the severity of the withdrawal stopped it having an affect and that without the withdrawal, there may be some success. Dr B thought it should help. My hope is that as my body recovers from the assault from the DA, then i can go back and try things that i've used before. I'm happy to try the pregabalin as it's on our PBS list and available for only $6.50 rather than the gabapentin which was very expensive.
I know i could get some cannabis of some description from my son who 'dabbles' however, it's such a big problem for him that I wouldn't do that as it would give the wrong messsage that i don't want to encourage. I have a friend at work who's inquiring from a friend of hers who uses the CBD oil for her son who suffers from epilepsy. I believe she gets it on the black market. As i understand it, the component that can make one high is often needed to control legs. I'm a newbie to cannabis though 20 years ago i did try some brownies, but hated the stoned effect- terrifying! However, if I was able to use something and then go to bed and sleep, i wouldn't be averse to it. I do have a friend who has in the past made green cookies and maybe she could help me!
Meanwhile, i continue to jiggle! The trouble is with standing up all the time is that my arthritis in ankles and knees gets so bad and then that triggers more RL! A vicious cycle.
I did see in a utube clip that if one's ferritin levels are above 75, taking oral iron isn't very effective in increasing ferritin levels and an infusion is the only way to go. I have been on iron tablets for 6 months and only moved from 75 to 78! My GP rationalizes that that' because my body doesn't need more ferritin and I've tried to convince him of the studies that suggest it should be over 100. I think he's open to trying it but doubtful of its efficacy. Anyway at least I only have 10 days until i see the hematologist and i hope he/she will be able and open to the research and papers that i will take. I don't have much faith that they will already be aware of the studies.
Well, that too is a long post! Thanks for the reponse and for your caring and concern. It is very much appreciated.
I really hope the haematologist agrees to an infusion- I have read all the papers and it can take up to 6 months to have an effect.
I totally understand the issue with the cannabis and you do need the THC ( the bit that gives you a high) to help the RLS but in low dose and taken last thing at night it helps sleep.
I hope the withdrawal from Ropinirole is less troublesome than the withdrawal from pramipexole.
I take OxyContin (25mg) and pregabalin ( up to 150mg) - often 2 meds at low dose work better than one at a higher dose.
Well, here I am. It's 1.15 am and I've had two 45 minute sleeps so far before being woken up by RL. I'm taking 75 mg morning and evening of pregabalin and wonder if taking it all at night wouldn't be better? I don't have any oxycodone etc at the moment only Tramadol and if i take more of that it keeps me awake! Of course, i can't know whether I'm up because of withdrawal from ropinirole or because the pregabalin dose isn't enough? Whichever way, i am trying to keep busy and not fight it and when tired and legs have settled, go back to bed and try again.
Pregabalin takes 3 weeks to be fully effective and while you are still in withdrawal ( which you will be for 2/3 weeks after last dose of Ropinirole) it won’t be fully effective.
Definitely take all the pregabalin at night if you don’t have daytime RLS. Pregabalin is very sedating and can cause dizziness and loss of balance- another reason to take it at night. It lasts about 5/6 hours so take it about 1 hour before usual bedtime.
Dr Buchfuhrer advised me to take tramadol 50mg every 4 hours at night during the worst of withdrawal and then reduce as the pregabalin kicks in.
I think you will start to feel much better in 2/3 weeks- but bear in mind it can take months for symptoms to settle after DAWS.
Actually, I think that is a big success. And it goes to show that your daytime RLS was owing to augmentation on the ropinirole. Hopefully the full dose of pregabalin at night will soon start to be effective. Keep it up!
I do believe you're right Lotte! It is a big success. To not have RL in the daytime is a real relief. Maybe this medication might be the one! I don't feel that the withdrawal is as bad as from the pramipexole so that is another big thing. It IS important to celebrate the positives. Thanks Lotte.
Hi. I found Dr.Mark Buchferer here in California who prescribes small doses of Methedone & other opiates to help RLS. Where do u live? I did not become addicted and it was easy to get off them when I wanted
I'm in Australia. I've emailed Dr B and he did suggest that but it is doubtful that I would be able to get it prescribed here. Certainly not without travelling quite a distance to a specialist. Cannabinoids are also illegal here so that's another thing off the list. However, I'm going to give Lyrica a good try as well as see if I can get the haematologist to give me an iron infusion, also recommended by Dr B.
That's bad luck Lotte. isn't it amazing just how varied our responses are.
I had three hours sleep last night... I'm hoping it's withdrawal from the ropinirole and will get better in a couple of weeks, then the Lyrica can kick in properly. Still, it's not as bad as the withdrawal from pramipexole which was hell.
Sorry Lor7, I read Lotte when I saw the Lo... The brain, especially when sleep deprived isn't as alert as it should be.... especially at this hour of the morning.
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