Ropinerole augmentation

[bookscriber]

Hi everyone. I've had RLS for 5 years now. Ropinerole helped me at first but now RLS is starting mid-afternoon and the ropinerole side effects are becoming unbearable. Social life in the evenings is impossible and sleep a thing of the past. I take sleeping tablets but they help only a little. I have tried exercises and magnesium to little avail. My GP tells me that ropinerole is the only available treatment available. I would like to see a neurologist but I doubt that would be granted. Any suggestions please​.

[Pippins2]

Hi and welcome. Oh dear it seems like your GP is of the knows nothing and too lazy to find out brigade! There are LOTS of treatments for RLS although if you have augmentation then you will have to steer clear of the Dopamine Agonists ( at least for a long while )

What dose is your Ropinerole? How long have you been on it? Have you had to increase the dose?

X

[bookscriber in reply to Pippins2]

Thanks Pippin. 3- 4 years on Ropinerole. Dose started at 1mg but it is 4 mg now. I have reduced to 3mg as that's as much as I can cope with. What is NICE and how do I get a referral?

[Pippins2 in reply to bookscriber]

NICE stands for National Institute for Clinical Excellence and they have guidelines which medical professionals should follow. In the UK it is your GP who refers you onto a Specialist.

Yes as you know your dose is too high. You will need a strong painkiller to help you to get off the Ropinerole. Many find Tramadol or Codeine helpful

If you click on my name it will take you to my profile. In my posts you will see one about augmentation which explains it a bit more x

[bookscriber in reply to Pippins2]

Thanks, will do

[Pippins2]

Oh and about the referal. NICE guide which doctors should follow states that you should be referred to a Neurologist or Sleep Specialist if augmentation occurs. X

[Madlegs1 in reply to Pippins2]

A sleep specialist is more likely to have better knowledge of rls than a Neurologist - from my experience with posters here.

[macewan13]

My GP referred me to a neurologist, who finally transferred me to a sleep clinic (which is brilliant).

I had bad augmentation on Ropinirole, as well as nausea and fainting. I came off it slowly, went onto Pregablin (weight gain) and am now on the Neupro patch, along with Tramadol. So far, this works most nights. Apparently the patch is less likely to cause augmentation than the dopamine pills.

I hope you manage to find a solution.

[Bkc1777]

I agree with Pippins2 completely. There are plenty options when it comes to Rls medicine. Hope you found that suits you well.

I was on pramipexole, (another DA medicine for Rls ) for 8 months but I just came off. It has been 1 week now and it is the best thing I have done. I am back to my happy self but broken sleep. I can live with that. Loads helpful people here suggested about iron , magnesium and calcium vitamins which I thinks it helps. I have had my first gabapentin (300mg) last night and I slept after that. Long it may continue.

Stay strong and everything will be ok in the end, if it isn't then it is not the end :))

B.

[LoisTonya]

I saw a neurologist, had a MRI scan, and all the neurologist did was increase my Ropinerole so I'm sorting it on my own with help from this site

[Kaarina Administrator]

Hi bookscriber

In case you were not able to find pippins posting here is the link: healthunlocked.com/rlsuk/po...

This link may be of help to you too: sleepreviewmag.com/2015/02/...

[Bganim1947]

I've been where you are with a neurologist who kept insisting that Ropinerole was the only way to treat my RLS that presents as a full-body experience that would totally incapacitate me for anywhere from a few hours to 16 hours. It became much worse each time my neurologist increased my medication.

I finally found out that I was experiencing augmentation the first day I found this website. The helpful and knowledgable folks on this site gave me the information I needed to develop a plan to fire my neurologist and work with my pharmacist and GP to titrate off the 12 mgs of Ropinerole Extended Release my Neurologist had me on.

They did warn me about the difficulties in going off this medication. I needed to do it slowly and might also need something like Tramadol or Vicodin. I also got one final piece of advice: check your most recent blood work results for low iron stores. Yes, I had low iron. One woman on this site told me about taking Iron Bisglycinate, an OTC supplement. She said that the Iron Bisglycinate was much better than iron sulfate as it absorbs better into the blood stream. Iron can be the most important key to overcoming RLS.

Thanks to her, I began taking a once a day dose of iron bisglycinate--a 28 Mg. capsule in the US, 25 Mgs. In the UK--at night before bedtime with a glass of orange juice. That alone has made it possible to wean off my Ropinerole from 12 mg extended release, down to now 4 Mgs. I also take a low dose of tramadol and gabapentin twice a day.

My goal is to get off the Ropinerole entirely and just take the iron bisglycinate supplement.

You might want to try iron bisglycinate at bedtime with orange juice--a necessary combo. The iron also makes one sleepy--kind of nice benefit. I had taken other types of iron supplements and nothing worked until this magic pill--I swear by it now. It did the trick and stopped the augmentation cold.

Bganim1947

[Bkc1777 in reply to Bganim1947]

That probably was tredlight! glad iron bisglycinate is working for you!

Hope you are ropinrole free soon.

B.

[Hidden in reply to Bganim1947]

Hi Bganim, Bkc I believe is right. I think you and I discussed the benefits of the bisglycinate versus the ferrous sulfate. I wanted to bring your post forward because some people are up in the air as to which iron to try. There are so many choices and doctors tend to prescribe the cheapest kind. Bisglycinate is the most expensive, but as you and I know, the most likely to work immediately.

[DonT]

I feel for you as I have had RLS for 20 years. I am on Propinole, I take 2 - 10 mg. I take the first one at 3:00 pm and the 2 nd one approximately 1 hour before bedtime. My Doctor has told me when I am having a tough day to go to 3 pills per day. Trust you can get relief from this terrible disease. DHT

[jk3842]

I am in the US. I had a similar situation. Now taking Horzant which is a time release of Gabapinton and also take Hyderocodeon with Pramipixical. I also use Canibus at night when needed. It's the pits aND counterproductive for your life. WE all have had to face RLS .

I am 77 and had it all my life mostly without meds. Get tough and don't start feeling sorry for your self. We all have our stories to tell. Somehow get the necessary treatmen and meds.

[BTABKWJ4561]

I get exactly the same thing as you I am on the full dose like a living hell

Regards Brian

[Pepper163]

I saw a RLS specialist and had my Ferritin levels checked. Mine was very low, a 9. I will have a 2 Iron Infusions 10 days apart. I have also started gaba tenton and will build up to have 900 mg. A Day. Like you, I began to have RLS starting in the late morning. The specialist believes I have " augmented"..on Ropinerole...I have been on Ropinerole x 20 years. There is now evidence that long standing use of Ropinerole begins to work against the body. Get your Ferritim blood levels checked, request a RLS specialist. MG H in Boston has a research specialist on RLS. Ropinerole appears to work on recently diagnosed RLS but less so after a few years.Good Luck!