hello, I'm new to the forum.

[helenjamieson1965]

Hi everyone. First of all thank you for having me here, I cannot tell you how it feels to have found this group. I have had RLS for the last two years, and it has taken over my life. I have it in my arms and legs. No night is free, and I take Ropinirole, finally prescribed to me after trying 13 other meds none of which worked. The Ropinirole does work, but I am having augmentation now, so even the day is not problem free. I am trying to hold down my job, but I have had to ask them to adjust my working pattern so that I have more morning shifts, when the RLS is not so bad. I cannot sit on a bus, which caused me big problems when my car was off the road and I had no other way of getting to work. I told my boss that I couldn't come to work for two days till I got my car back, because I did try the bus but it was absolutely horrendous. This resulted in a Welfare meeting and didn't go down well with H/O. But the result of that is that they realise now that it is a medical condition and I'm not exaggerating. They accessed my Medical records too, like they didn't believe me. I tried to tell them it's not just work the RLS affects, it's my whole life. My partner and I have been together 3 years and for the last year we have slept in separate rooms. He wouldn't get any sleep otherwise, but I do hate it. When I see a queue that I will have to stand in I fill up with dread. The cinema is out of the question, and meals are no fun at all. I have sat in a car as a passenger and I would willingly open the door and jump out, I don't care what speed we are travelling at. For some reason when I drive myself the RLS is not there, but I can see that that is changing too, which will make life even more difficult. Visiting people is not something I do any more, and when we have guests staying I have to leave them through the evening to go for a walk till the Ropinirole takes effect, and then when it does I fall asleep!! Nothing is fun any more. My Ferratin levels are low, and I am on Ferrous Sulphate for that, but it's a long process. I also heard that Ropinirole is not the best treatment if you are on an course of Iron tablets. Is this right? Sorry to go on and on here, but the relief at finding this site is tremendous, and at last someone will actually know exactly what I am talking about... Glad to be here.

[xristina47]

Hello Helen,

Welcome to the site – I think we all find this site a huge comfort – I’m sure you will too and I hope you will get a lot of help here.

I had the same augmentation as you after only 4 months on Ropinirole and like you, my ferritin was low at 25mg/l. In my understanding, if you can boost your ferritin levels with ferrous sulphate, you won’t augment so quickly on dopamine agonist medication. I haven’t heard that taking Ropinirole and iron together is a bad thing, but maybe someone else knows about that better than me. Personally, though, augmentation was definitely making my WED far worse than before, so I stopped taking the Ropinirole quite abruptly but had a very hard time for several weeks afterwards, though I’d only been on a very small dose. Like you, I had previously tried other meds with no success and I believe that some of them actually made the WED worse. Could it be the same for you too, I wonder? Even through taking a drug holiday is very hard at the beginning, for me, it is proving to be a successful move. At present, I am not taking anything at all except ferrous sulphate and though it has taken three months, I am now feeling much better, with my WED symptoms considerably less than before. I am simply concentrating on building up my ferritin levels, (with blood tests every few months). I’ll stop and start the ferrous sulphate as necessary to aim to keep the ferritin levels above 50. My sleep is getting better now – though I still wake up with PLM once or twice a night. Of course, a drug holiday may not be appropriate for you, but it’s one idea worth considering. Another idea might be to switch to Pramipexole.

You say that you have no WED when you drive – I expect that’s because you’re brain is actively involved with concentrating on the road. I find that getting myself mentally immersed in something interesting often gets rid of the WED symptoms.

Good luck! I hope you find some relief soon, one way or another.

Christine

[Polar Bear]

Helen, I also have symptoms 24/7 in both arms and legs. Travelling in a bus/plane, going to the cinema all were a problem.

The best thing I did was taking a copy of the Mayo Clinic Algorithm to my GP, a link to it can be found in my signature. He used the Algorithm as a guide to medications and today I use Ropinerole and Tramadol. Not all medications work for everyone as you already know. But perhaps you and your doctor may find some positive information on it regarding treatment.

[helenjamieson1965]

Thank you Xristina and Polar Bear.
I have kind of tried a drug holiday, I was taking 3mg of Ropinirole every night, and through sheer hard work and many, many tears I am now reduced to 2 mg. I feel the days are slightly better in the fact I have the odd half hour or hour at peace during the evenings before I take the meds. I don't take anything else apart from the Ferrous Sulphate, and I was going to try reduce to 1.5 mg Ropinirole tonight but I lost my nerve, I couldn't face doing it! Maybe I'll be brave enough tomorrow night. I'm due to recieve an appointment with my Neurologist soon, and I want to ask him what the best way to do it is, because the RLS is really unbearable for a couple of weeks after I reduce dosage, then it settles down to being just horrendous. I am very tired, and very scared, and I can cry at the drop of a hat. I feel very alone and would just love to do normal things, like watch tv or read a book. Or just sit and talk to Colin.

[ViewsAskew]

Hi Helen,

So sorry you're going through this. Like you, I also augmented and I know what a horrible time that is. WED/RLS on steriods...

Taking iron at the same time with ropinerole is not a problem, as far as I know. What is best is that the ferritin is at least 50, and better 100 BEFORE you start the dopamine agonist.

The doctors who wrote "Clinical Management of Restless Legs Syndrome" suggest that when there is severe augmentation that stopping the DA is the best solution. They suggest taking an opioid (have you tried any?) to get through this time as the WED will often worsen when you stop the DA.

I highly suggest getting this book and reading it. You can even take it to your doctor and suggest that you follow it for your treatment.

I've also been through many drugs. And even though I augmented terribly on Mirapex, I currently am taking it again. I just don't take it more than 3-4 days a week. I take an opioid the other 3-4 days. This prevents me from augmenting and it prevents me from having the worst of the opioid side effects (primarily lethargy and fatigue).

I can work, but still have a hard time with full-time. I sleep OK most nights, but still have some problems. Compared to the times it's been worst, though, this is wonderful.

I hope you keep finding things here to read that may help you. Mostly I hope you find a solution...and very, very soon.

[helenjamieson1965]

Thank you so much everyone for all your kind words. I am seriously considering coming off Ropinirole although I am scared to do this, as I know I will be back to square one with the RLS/WED. But at least it would (hopefully) once again be confined to night time. But how do I do this? I thought I would have to do it very gradually, reducing the dosage little by little, hence my reduction from 3mg to 2 mg. But i have read here on the forum that it's best done immediately. Is this right? I thought (not sure why I thought this) that it was dangerous to do it abruptly and without medical supervision. I clearly don't know enough about doing this, can anyone advise me. Even though the Ropinirole has mainly been a lifeline at times, I now need to give my body (and mind!) a break, but I know hard times are ahead. Thanks for taking the time to help me.

[xristina47]

Poor Helen, I really do feel for you. Perhaps you should wait for your appointment with your neurologist to discuss how to come off Ropinirole. As Ann pointed out "Clinical Management of Restless Legs Syndrome" recommends going on opioids to ease the withdrawal period. I live in France where doctors are under strict controls as to what they can prescribe and I was doubtful that my doctor would be willing to prescribe opioids, so I never bothered to ask – I just stopped the Ropinirole abruptly, on my own decision, but I definitely wouldn’t recommend it because I had a hard time, though I was only on a small dose of Ropinrole, (0.50mg). You might also send an email to Dr Buchfuhrer at the Southern California Support Group http://www.rlshelp.org/
Dr B. is of the authors of the above book and of another one aimed more at non medical people: "Restless Legs Syndrome: Coping With Your Sleepless Nights". He replies incredibly quickly and is a great help.

[Polar Bear]

This is a direct email address for Dr B.
somno@verizon.net

As Xristina says, he is wonderful at responding and I have on three occasions taken his response to my GP.

Some people like to come off the ropinerole abruptly (with a different drug such as an opiod added to ease the way). Others try weaning and cutting down.
Also, if cutting down, perhaps going down to 2mg from 3mg of ropinerole was too big a drop. Especially if you didn't have any other med to help your reduction.

[ViewsAskew]

Helen, I am not a doctor....

What I have read from the doctors is that the DAs are not dangerous to stop quickly at the doses we take them. I don't know what would happen if we were taking Parkinson doses.

You can step down slowly; I did that. And it worked to a point. It did help for a short while, but eventually, even at the lower dose, I still had horrid problems. I wasn't able to tolerate the increased RLS/WED when I stopped it completely - it made me insane. I tried stopping 2 or 3 times and couldn't make it.

I highly recommend seeing your doctor and taking info about augmentation with you. Unfortunately, even though it's been noted in the medical research literature for at least 10 years, many doctors still do not know it exists or what to do about it.

If your doctor cannot help you (mine made it worse by prescribing Sinemet), or will not help you stop the ropinerole, another doctor may be able to help you. I went to my GP with a letter from DR B and some research about it explaining that opioids were the best option and he agreed to help me. Of course, just my experience.

[helenjamieson1965]

Thank you thank you all. I will definately email Dr.Buchfuhrer (hope I spelt that right), and ask for his advice. I am going to reduce the Ropinirole by another 0.5 mg in the next few nights, and then try and persevere with that dosage until I see my Neurologist, in 4 weeks time. I am hoping he will help me wean off completely with the help of Opiates, as you suggest. I think I misled you too, as when I say I reduced from 3mg to 2mg I did it by 0.5 mg at a time. And I have started taking Magnesium and Vit B12 supplements too, but I'm not sure of the best dosage of these to take. My Magnesium is 1 tablet of 250mg and the B12 is 1 tablet of 1000mg. Are these the recommended doses to take. I'm so sorry to be so demanding, but the lovely people on this Forum are far more knowledgable about RLS/WED than any of the doctors I've seen, and I thank you so much for even bothering to help me.

[Polar Bear]

Helen, of course you are not demanding.
Anyone who asks questions is interested and enthusiastic, wants to learn, and probably needs to learn for their own health. Also when you ask questions, the answers are providing information for all others who read the posts.
Yes, I thought you had reduced your ropinerole from 3 to 2 in one step.

Sorry I'm don't know the optimum doses for Vit B12 or magnesium but do doubt you will get a response on that issue before too long.

And we thank you for your lovely compliment about our Forum.

[ViewsAskew]

I echo Polar Bear's comments...we've all been there and know what it's like to not know where to turn for help and to be getting incomplete or incorrect or insufficient information. None of us are doctors and we don't intend anyone should ever think of us that way...but hopefully we have information that can help you work better with your doctor and to direct your care in a better manner.

Keep asking until you learn what you need to...that's one of the reasons we all hang out here. We're paying back all the people who helped us when we needed it.

[badnights]

helenjamieson1965, how are you doing?O'm coming into this rather late, I've been away all August, but it['s clear since you're augmenting you need to get off ropinirole and ( not waiting, no tapering) get it replaced with something else (an opiod) for the withdrawal period. It's that what's happening?