Ropinirole 6mg

[Rish]

Hello everyone it’s been a very long time since I posted on here and I was wondering if any of you are on a higher dose than the Rls limit? Thank you.

[Joolsg]

Hi Rish,

I have seen a few people on here who have been on high doses of Ropinirole. Some have been on 12mg and suffering dreadful Augmentation. Most have successfully reduced and moved to other meds.

I presume you are on more than 1mg?

[Rish in reply to Joolsg]

Hi joolsg yes I am taking 6mg ropinirole after a bit of a fight with my doctors and neurologist but to be honest it’s still not good enough and I have tried all the other medication for RLS my body gets use to the medication and it stops working! I have very bad RLS and if it doesn’t stop I go for more tablets not caring what they are! Just anything to make them stop 😢

[Hidden in reply to Rish]

Hi Rish, are you the Rish who we watched you go through your pregnancy and you had a beautiful baby at the end of it all.? If so, i am sure your baby is more of a toddler now. Anyway, would your doctor prescribe opiates for you, they seems to work better for most than any of the other meds, if you having tried any yet. There is a pinned post all about augmentation which might help you., as 6mg is waaaay more than you should take, and the more, the worse time weaning off it.

[Hidden in reply to Hidden]

Rish watch the video on the link i have posted on Augmentation and what Dr Early one of the best RLS experts has to say about it. hopkinsmedicine.org/neurolo...

[Rish in reply to Hidden]

Hi yes Elisse it’s me who had my little girl she has just turned 5 years old last month. No I have not tried that one I will make a note and ask about it thank you ,?hoping you are as well as can be x

[Hidden in reply to Rish]

Wow, your daughter has just turned 5 yrs old, time flies too quick some times. Make sure you read that pinned post on Augmentation you will need a opiate to help with the withdrawals while weaning. Any advice you need about it, then ask in here. Jools has gone through it as has a few more on here and i am sure they will give you lots of tips etc on weaning, x

[Parminter in reply to Rish]

Rish, have you had your ferritin levels tested recently? Your baby would have eaten what iron you had left while she was in utero.

Brain iron, or the lack thereof, is at the bottom of this condition, so it must be the first thing you address.

[Rish in reply to Parminter]

Yes I was on iron tablets but the doctor said I’m back up so he stopped them . Thank you tho for your comment.

[Parminter in reply to Rish]

"Back up' is not a sufficient answer for RLS. What is the number? The ferritin levels that we need are almost impossible to achieve with tablets - we need to be at 100 or more. I did not feel better until my ferritin was over 200, and many people here have said they feel best at around 350. This can only be done with IV iron.

'Normal' for most of the population is very low for us.

[Rish in reply to Parminter]

I’m not sure what level is was all my doctor said was it was ok and stopped the iron tablets. The problem with my doctors they don’t understand RLS, and I don’t Eva think they will unless you have it. I’m feeling very let down by the NHS lately and with all my other problems I’m just being pushed to the side . 😒

[Parminter in reply to Rish]

I'm so sorry to hear this, but the truth is that medics are not trained in this. My doctor admits that his knowledge is minimal - what most doctors know comes from drug reps who have an agenda and a drug to sell. They could not care less if it harms us.

When I got to the state where you are now I realized that the only thing left was for me to do the work and the research. So I spent months and months collecting scientific papers and learning as much as I could - then I took the results to my doctor.

Since then I have had several IV Iron infusions and come off dopamine agonists - the latter were destroying me.

Doctors will not listen to hearsay or chatter - but they cannot ignore concrete evidence from the finest researchers on the planet.

It was not easy, as I am not a scientist, and it took a long time, but I got there in the end.

Now I have no symptoms and I sleep all night long.

But I am lucky to have a doctor who will listen, and I do not have to deal with the NHS.

[Hidden in reply to Rish]

Rish you can ask what your ferritin level was when you had it tested. They say for RLSers it needs to be 100+ and it is almost impossible to reach that number with just iron pills, i believe Jools did with what she took. Getting a iron infusion in the UK is also almost impossible for RLS. I think a couple of people on here have had it done in the UK, but it sounds as if your doctor wouldnt be up to referring you for it. It doesnt work for everyone some find its a benefit some dont. Dont give up, for asking for the Tramadol so you can get right off the Ropinerole. You can and will do this, and you will get all the support you need from the members on here. x

[Joolsg in reply to Rish]

Hi Rish

Your doctors are doing you a favour by not allowing you a higher dose. The new maximum is 1mg. Increasing the dose is like pouring gasoline on the fire according to Dr Early.

As Elisse has advised , look up the pinned post on Augmentation and watch the video.

If Ropinirole is not working, and symptoms are starting earlier and getting worse, your only option is to slowly reduce and find alternative meds.

You’re not alone- many of us have experienced what you’re going through and successfully gone through withdrawal and found other meds.

Do read the posts and watch the video.

[Bat3353]

I was on 4mg Extended Release during the day and 3mg at night until I was told of a new word on this site augementation so I went on the rls foundation websit and since then I’m coming of ropinorole my donator dropped 2mg off the 4mg and added lyrica at night the goal is to get off the dopamines it was tempting to stay hooked on the drug but I’m determined not to let this drug run my life this site has been my lifeline

[Rish in reply to Bat3353]

Thank you for your reply, I was taking lyrica at night but then I was taking more and more and the doctor told me off as they to was not doing anything! My doctor sent me to see a specialist and he had a long conversation with me at the end of it he said well I’m pleased to say your not a hypochondriac or psychosomatic I was annoyed with my doctor sending me to this specialist with out me knowing who he was ! Anyway in January I took myself off all my medication except ropinirole. I stopped them all with no slowly reducing them I had one hell of a fortnight but I stuck it out. It seems no matter what I take it won’t work these bloody horrible twitching legs drive me potty ! I’m tired of them and have had enough.

[Bat3353 in reply to Rish]

I know what your going through but trust me you don’t want to do the ropinorole it’s addicting and once your on it it’s going to be hell to get off just keep writing what your doing and go to the foundation website and get a specialist near you I’ve been told that until your off ropinorole for two weeks the your body will work better with the other. Meds I was originally on neutro 5mg and 3mg ropinorole at night but I was very sleepy all day and no energy and decided to get off the patches. The cost of two patches for 90 days is $4000 my insurance covered it but I didn’t want to let this patch run my life so I found this site and now I’m going to get off these dopamines for good all my doctors did was keep raising the dose and now I have to come off of them but don’t go the torcher of doing it your self good luck

[Parminter]

Rish, I see you had RLS before you had your baby, so the question of your iron-status, and that of your baby, is paramount.

Having familial RLS and the RLS of pregnancy together must be nightmarish. And there is the real possibility that you have handed it on to your baby.

So ask for a ferritin check for both of you.

[Graciegirl8 in reply to Parminter]

What's the difference between iron check and ferritin?

[Lapsedrunner in reply to Graciegirl8]

Ferritin is a measure of iron storage

[Graciegirl8 in reply to Lapsedrunner]

Do I have to request that test?

[Parminter in reply to Graciegirl8]

Yes. The ferritin test is the only way to show how much iron you are storing (ferritin is the iron storage molecule), and therefore how much iron you have in your brain, not just circulating in your blood.

RLS has much to do with problems with iron storage in the brain, where we need it.

[Hidden]

Yikes. Get off that ropinrole . I saw things Timothy

Leary never dreamed of

[tweedy66]

I've been on 6mg of ropinirole for many years and it worked well. After augmentation last summer my PCP tried me on horizant and a couple of other meds .....no good!! Unfortunately he has very little knowledge of RLS ....I think most doctors are the same. After seeing Dr. Winkleman I'm now in the process of coming off it as he feels I could have augmentation again. Yesterday was 1 week of 51/2 mg...not having many RLS symptoms but he did up my lyrica to 300 mg. I've also been on zolpidem which he suggested I should also stop . I think I'll do another week of 51/2 and then decrease to 5. What a process this is...thank you for this forum as I don't know where we would get any guidance.

[Tinabugsu]

You are in very difficult situation because your doctor should have never prescribed anywhere near that dose. What happens with dopamine agonist like requip and mirapex and levodopa is thatwhat happens with dopamine Agnes like Creek whip and mirror packs and love add OPA is that you develop augmentation wish means that those particular drugs although they temporarily help you ultimately and most cases make your symptoms significantly worse. So a doctor that specializes in RLS would give you a minimal dose and if that minimal dose stopped working you should never take another dopamine agonist and they should resort to some other solution. There's a group on Facebook for people with restless legs syndrome it has the technical name too. I would join that group and download the files and bring them to your doctor and find a way to get off of that drug as soon as you can and find a different solution. For me Lyrica didn't work made me feel drunk all the time gabapentin only work for a day or two and then it stopped working and I was on a very high dose horizant if anything made my legs worse so now I'm prescribed methadone. Never slept better.

[Sara_2611]

Hi

I dont use it so I dont know. my sincerely apologise. good luck Rish

[Rish]

Thank you everyone for your reply’s and advice. I seen one of the gp’s yesterday evening and told her about many things and the advice you all gave me so she is going to do a blood test and refer me to have Iv Iron infusion. I also gave her the info to look up and watch about Augmentation and I did say because non of the doctors here know about Rls and it would be helpful if one doctor knew what was going on and things explained, so hopefully my doctor will help me get sorted. Thank you everyone 💐 x

[Rish in reply to Rish]

Oh ps she also gave me gabapentin to take at night , I have been on it before years ago so I’m trying it again .

[robert1957 in reply to Rish]

Hello Rish please research magnesium deficiency and symptoms of magnesium deficiency also research vitamins d3 k2mk7 good luck

[Hidden in reply to Rish]

Great result Rish from seeing your doctor, most doctors would dismiss what a forum had to say. I sooooo hope she does watch the augmentation video, most doctors would be too busy to do that. Getting one more doctor informed on how to actually deal RLS for some one else with it , would be brilliant. ! Keep us informed how you are going with it all x

[Rish in reply to Hidden]

I will do thank you Elisse x

[Rish]

Hey everyone I got my blood results back today the said everything was fine and no further action so I asked what’s my iron level she said 24 ! I’m hoping when my doctor phones next week that she has read the information I gave her and she will help me! My legs are terrible I have been taking 4 tablets a day and they are 2 mg each of ropinirole but it’s not working and the gabapentin is not helping 😢

[Joolsg in reply to Rish]

24 for iron or serum ferritin? Ask for the serum ferritin levels and if 24- way too low. Needs to be above 100. 8 mg of Ropinirole is quite literally pouring gasoline on a fire.

Reduce slowly.

[Joolsg in reply to Rish]

Oh and sadly the Gabapentin won’t help until about 2/3 weeks after you’ve taken the last Ropinirole. Reduce by 0.5mg every 5 days and bear in mind the RLS will flare up again with each reduction.

I promise life off Ropinirole at such a high dose is much better.

Many on here have gone through withdrawal and have found the right combination of meds that help.

[Rish in reply to Joolsg]

Thank you joolsg

[Graciegirl8]

I take 4 mg of requip at bedtime is that alot?

[Joolsg in reply to Graciegirl8]

The new maximum recommended by RLS experts is 1mg but most doctors are unaware of this and the drug companies still have 4mg as the maximum in the ned leaflets.

Watch out for signs of Augmentation and read the pinned post ( top right) on this important topic.