started with restless leg syndrome got worse

[Stickman58]

anyone else in my position? And whats next? Its controlling my life.

[ChickenTwisty]

Are you taking any sort of Dopamine Antagonist (commonly found in anti-anxiety and anti-depressant medication)? Pramipexole is a common one widely associated with making RLS symptoms worse ... if yes you may want to give some consideration to if you are experiencing RLS augmentation rls.org/treatment/managing-....

[Stickman58 in reply to ChickenTwisty]

I may not have said this is NOT r.l.s. anymore. This is limb movement disorder of some kind. It's violent kicking of legs, arms, bend of body, chest muscles jerk hard, can't stand still, have to move. R.l.s. is a rain storm, this is a cat 4 hurricane. Meds work, but twice in 24 hours I need to control the p.l.m.d.

[LotteM]

Stickman, I read your personal page, which says that the RLS has been there since childhood/teens, that the symptoms are now 24/7 and that 6mg Requip (ropinirole) stops them. From your cry for help, apparently the Requip doesn't stop the symptoms for long. This accounts 'screams' augmentation', which is a paradoxical worsening of the symptoms caused by the medicines, specifically by dopamine agonists (DA) such as Requip. Signs of augmentation are that symptoms return sooner after taking a dose of Requip (in your case), start earlier in the day, may spread to other body parts and get worse in general. You don't say about RLS in parts other than legs, but all other signs are there. Also, your dose of Requip is 1.5 times the maximum dose, and higher doses and the length of time you have taken a DA both contribute to a higher risk of augmentation.

So what now. First, get the updated guidelines for the treatment of RLS and read them: mayoclinicproceedings.org/a...

From this and our collective experiences this is the short story of what you should do:

First get a full blood panel for iron, including transferrin saturation and ferritin. Ask for the actual numbers. Ferritin for people with RLS should be as high as possible, preferably over 100 or even 200. If lower, and if saturation below 45% start taking an iron supplement on an empty stomach (just before bed) every other day. This raises iron slowly but steadily and with far less side effects than by taking it 3x daily.

Next, reduce your Requip. But lowering the dose will - at least temporarily - increase symptoms. Thus do it slowly. Very slowly. Start with reducing 0.25mg. There are pills this size or you can cut the larger pills. Wait for the symptoms to settle. And reduce the next 0.25mg step no sooner than after about 2 weeks. Reducing will after some time most likely rid you of tue daytime symptoms.

Think of a replacement medicine if needed. Standard are gabapentin or pregabalin. They do take time to reach effectiveness, some 3 weeks. This if you think you need a replacement, start about 3 weeks before that last Requip and build ip slowly. After you last Requip symptoms will most likely be severe and take far linger to settle. This will be a difficult period, but you will get through as many other have done before you. And you will be better afterwards.

Do discuss this thoroughly with you doctor. We generally advise NOT to start on another DA, such as Sifrol/Mirapex (pramipexole) or Neupro (rotigotine, a patch). In our experience augmentation comes back, sooner rather than later.

Finally, spend time reading on this forum and you will learn you are not alone and you are not the first. Take heart and stay in touch!

[SueJohnson]

LottieM has given you excellent advice. I have only a few things to add. Definitely read the Mayo article she has provided the link to and since your doctor has prescribed requip and let you get on such a high dose, you will need to provide a copy to him/her and make sure s/he reads it. If you have had any blood tests in the recent past, they might have included ferritin. Ask your doctor. If your ferritin is less than 75, take iron supplements at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee. If over 75 but less than 100, you will need an iron infusion as the iron supplement doesn't help much above 75. If you take magnesium which helps some people, take it at least 2 hours apart from the iron as it interferes with the iron absorption. If you are prescribed gabapentin which is now the preferred medicine for RLS, don't take any magnesium within 3 hours of gabapentin as it interferes with the absorption of gabapentin. You may need a low dose opioid when you near the end of coming off requip to temporarily help with your RLS symptoms. It's going to take you a long time to come off the requip, and it won't be any fun, but hang in there. It will be worth it,

[Stickman58]

thanks for your help. This is p.l.m.d. that started with r.l.s. I'm just so tired of it, that stopping meds, & going through that torture..well I've just had enough! I haven't much faith in our local health system. They don't care about helping only testing for money. To them, getting sued for malpractice is cheaper then paying a specialist. Its all p.a's there. I do not tolerate meds well & have had severe reactions to many. So that in itself is a gamble. & if it doesn't work. I don't have a life anymore . The requip was a miracle to me. It stopped it all! Nothing else did that. I could take clonazapan with it, it may reduce the amount f requip I take? If it helped? But benzo is a terrible drug. This is full body kicking, twisting, punching, and pacing.

[DicCarlson in reply to Stickman58]

I would say you are experiencing the worst of augmentation. There's a long road ahead - but it's doable. I hear you - how nice it was on the Requip. It's hard to even imagine that this nice friendly dog has turned on you, barring his teeth, but that's the hallmark of augmentation! There but for the grace of god - many of us would have gone (Requip was offered to me over and over), but for the excellent information on this forum.

[LotteM in reply to DicCarlson]

Well said, Dic.

[ChickenTwisty]

Hi stickman,

Lotte and Sue have given you information consistent with the latest expert advice. It's good advice.

PLM is a feature of RLS, if you had RLS then you still have it and it is likely the medication is making it worse, including your PLM.

RLS Augmentation is the issue, google it and have a look at the kind ladies advice above.

[Joolsg]

I agree with Lotte. To stop the torture, the only thing to do is get off that 6mg of Ropinirole. 6mg is negligently high & you should consider legal action. There have been a few successful cases in the UK and class actions in the USA.It's really tough but your life will be so much better off Ropinirole. Most members of this site have been in your situation & most of us have managed to get off Ropinirole & onto low dose opioids or pregabalin/gabapentin.

[ChickenTwisty in reply to Joolsg]

Hi Jules,

Do you have a link or reference to any cases?

I love the law (in my next life I will be a lawyer). I have self represented in some complex scenarios and would like to see if I have a case here, think I might given I have found documentation that my augmentation was noted in 2012 (and so I shouldn't have been on prami for another 9 years of suffering).

[Joolsg in reply to ChickenTwisty]

Are you in UK? I have a few links to negligence cases against neurologists and doctors re dopamine agonists.If your notes mention augmentation in 2012 and they continued you on Pramipexole without mentioning it, you would have a case.

[ChickenTwisty in reply to Joolsg]

No, I am in Australia and we have no relevant cases I can find. There are a few on people trying to get social security disability including RLS, and one on a DR being disciplined for self prescribing with RLS, but nothing in the medical negligance area so your links would still be useful to see the deliberations.

[Joolsg in reply to ChickenTwisty]

Ok. Will find the links & send by DM.

[Marlayna]

Hi Stickman, wanted to throw my support in here as a fellow US health system patient. It’s tough for us, but with the excellent guidance given by the pros in here, you can take that info to the right doctor and demand what you want. I’ve taken to paying cash because I’m fed up with our insurance BS. I tell the docs what I want and get it.

Through the help in this forum I discovered and treated a very low iron issue. Much better now. I supplement occasionally at night with oxy, Xanax and Valium. I don’t eat after 3 pm and avoid sugar and alcohol as much as possible. The combo of tips and tricks I’ve learned here has helped me tremendously. We have to be our own specialists in the states!

Also there is the RLS specialist Dr. Mark Buchfuhrer in California. Sounds like he might be worth a trip in your case. I left a message for him a couple weeks ago and haven’t heard back but since I’m doing OK at the moment I haven’t pressed it. With the severity of your symptoms, you might want to check him out.

[hscarangella]

Yes I understand as it has controlled most of my life. I have been taking Ropinirole every night for the last 2 years and also take magnesium and it seems to be more under control then ever before. I don't get it every night and if I getit it seems milder. I hope thiskeeps up and it doesn't start again as I find it unbearable.

[TheDoDahMan]

While you slowly cut down on the dopamine agonist, the hell you will probably go through may be greatly palliated by getting a prescription for a low-dose opioid. I take a mere 10 mg of methadone daily and it has changed my life. Print out the Mayo Clinic Proceedings for RLS to convince your doctor that this is now considered best practices by RLS specialists.