Almost Half Way There

[DogsCatsFamily]

I am almost at my halfway point in getting off of Ropinarole. I finally found an online doctor willing to let me start adding low doses of Gabapentin as I do this. My GP wouldn’t give me anything to help so had to seek help outside of my insurance coverage which makes me so angry. Anyway, my question is I think once I get off of the Ropinarole I want to be on the Pregabalin but my online doctor isn’t allowed to prescribe it to me that’s why I’m taking the Gabapentin. My doctor gave me some Pregabalin to start once I am off of the Ropinarole. My question what would be the process of switching over from the Gabapentin to the Pregabalin?

[SueJohnson]

Just divide the amount of gabapentin you are taking by 6. You can switch directly.

[DogsCatsFamily in reply to SueJohnson]

Thanks. I might just try staying on the Gabapentin if it works once I'm off of the Ropinirole and I find the correct dose. In the meantime hopefully I can also get someone to give me an iron blood-test that includes my ferritin levels so I can explore that as a possible concern.

[DicCarlson]

Did you ever get your iron status tested? It could be a key player in your RLS.

[DogsCatsFamily in reply to DicCarlson]

I’m in the process of changing doctors which in the US takes forever since my current doctor won’t do anything to help me. I actually got an iron test, but that was before I knew to ask specifically for my ferritin levels so I didn’t get them. My hope is with my new doctor we can start working on some of those things. In the meantime the online doctors are limited in what they can do but at least they’re doing something unlike my regular primary physician. I have an appointment with a neurologist, but they can’t give me in until May.

[Barabrithlady]

I’m from the uk where getting any medical help is now very difficult. I’ve been on Ropinirole for aprox six years 2mg per night. Occasionally I have to take another one later in the night time. I’m not having any side effects but I’m seeing so many of you from other countries weaning yourself off these tablets. Can I ask why? I’m finding that they do help enormously so should I be concerned about taking them long term? It’s no use asking my Doctor (if I could actually get an appointment as the NHS is almost none existent now unless you have an immediate life threatening condition) Firstly they don’t seem to know anything about RLS and secondly they just don’t have the time to talk to you about any illness. I’d appreciate your honesty about this issue. (I’m a woman of 69 yrs old, T2 diabetic which is very much under control, normal weight for my hight and ver fit and active. I walk approximately 3 to 5 miles per day)

[DogsCatsFamily in reply to Barabrithlady]

I don't mine telling you about my experience but if you want others to reply you may want to start your own post rather than reply to mine I'm 67 and I had RLS for 20 years and due to drug side effects my doctors warned me about I tried to manage my RLS without medication. I have Generalized Anxiety and it got really severe so they changed my medication for it which amped up the RLS to a point I couldn't tolerate so they put me first on Gabapentin, but not a high enough dose as I later found out and so then put me on Ropinirole. Only a few months later the RLS was getting worse and worse so they continued to up my dose. I saw my doctor and she just chalked it up to it getting worse. l thankfully didn't agree with her and started researching and found this page. If you read some of the other articles you will see that many people, not all, have an adverse reaction called Augmentation which actually causes the RLS to worsen. Mine went from a round just after I went to bed in the evening to being unable to sit even during the day for more than an hour at a time or the RLS would flare up and I'd have to start walking around. Within a few months I was unable to curl up on the couch in the evenings or even put my feet up on a footstool without it aggravating the RLS. I also if was exhausted was unable to take a nap during the day without it keeping me awake; I would even try sitting up in a recliner with my feet on the ground and I couldn't without getting up and walking around. From what I've read on this page the longer you've been on Ropinirole the more difficult it can be to get off of it. So as I said this was my experience but there are many people on here who have been through a variety of situations.

[SueJohnson in reply to Barabrithlady]

I told you this before.

Up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work. And one expert believes everyone will eventually suffer augmentation. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment.Https://mayoclinicproceedings.org/a...

The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.

Put augmentation in the search box to see other articles.

[Jrskyhook32 in reply to SueJohnson]

Sue that is extremely helpful and absolutely frightening. I’ve had RLS since high school. It has gotten progressively worse. I be been on ropinirol/Neupro since 2007. One genius doctor tried to take me off it and told me it would be fine to go cold turkey. After 5 days no sleep I was contemplating suicide. I’m so scared I’m going to augment and I really can’t afford living in the US I’m locked down to places in the world where I can get this poison to stop my legs from jumping. I’m scared and so frustrated.

[SueJohnson in reply to Jrskyhook32]

Do you currently live in the US? How much ropinirole are you taking?

[Jrskyhook32 in reply to SueJohnson]

No I live in Albania. Im on Neupro now 3 mg patch.

[SueJohnson in reply to Jrskyhook32]

That is the maximum. Is it controlling your symptoms?

[Jrskyhook32 in reply to SueJohnson]

It is.

[SueJohnson in reply to Jrskyhook32]

Well then I guess you have a choice. 1) you can continue to stay on it and just watch out for signs of augmentation or 2) you can come off it very slowly now and switch to something else. If you decide on the 2nd one reply back and I can advise you.

[Jrskyhook32 in reply to SueJohnson]

She I’m sorry this is so late getting back to you. Neupro is working, and I can get it but only at 2 or 4 mg. The doctor here told me not to cut them. She told me that it’s possible to get Ropinirol. And that usually time away from a medicine could clear the augmentation. Do you think that’s possible?

[Jrskyhook32 in reply to Jrskyhook32]

Sue sorry got the typo.

[SueJohnson in reply to Jrskyhook32]

Since you have been on it since 2007 chances are pretty good you won't augment. Not everyone does. That's assuming you haven't had to increase your dose your dose in the past year to control your symptoms. I would be inclined to stay on it. Most people who suffer augmentation do so in the first 10 years.

You can cut the patch even though they say you can't. Lots of people on the forum have.

I'm not sure what you mean by "time away from a medicine could clear the augmentation"

[Jrskyhook32 in reply to SueJohnson]

I’m sorry I wasn’t clear. From 2003-2014 I was on requip. I seemed to be augmenting because I was feeling weird sensations in my hands as well. So the doctor put me on Neupro. But the Neupro was inappropriately dosed. She had me on 6 mg or 8 I forget. Then I would get sick to my stomach all the time and feel drowsy. So She looked at it again and slowly brought me down to 2 mg. I went up to 3 when I saw Dr B. In 2018. I’ve been on 3 ever since.

[SueJohnson in reply to Jrskyhook32]

I'm confused. Looking back at your previous posts you said you were on 2 mg neupro both 7 months ago and 9 months ago so you increased it to 3 mg since then although you didn't say why. Also you said 9 months ago you had tingling in your fingers and hands. Did that clear up by itself?

So did you decrease it from the 3 mg which Dr. B prescribed but found it didn't cover your symptoms so increased it back up to 3 mg?

[Jrskyhook32 in reply to SueJohnson]

Dr B had me on 3 mg plus belbuca. I was falling asleep at work. I didn’t have any real issues with RLS or it I did the combination of the two drugs worked really well to hide it. We decided to go down in strength on the Neupro gradually and then gradually reduce the belbuca to a smaller dose. Which we also did. I had breakthroughs but it worked pretty well I was retiring and leaving for Mexico and I knew I could get the Belbuca there so I weened myself off of that. At that point the 2 mg of Neupro wasn’t working like I wanted it to. We went back up to 3 mg Neupro which is where I’m at today. However, now I’m in Thailand and the Neupro is hard to get. I saw a doctor here that thought I could go back on Ropinirol seeing as it is easy to find here and a lot less expensive. My question is since I started to augment all those years ago on Ropinirol will that augmentation happen again when or if I exchange the Neupro for Ropinirol.

[Jrskyhook32 in reply to Jrskyhook32]

I’ve been on so many different and varied doses of Ropinirol, Neupro, methadone and belbuca it is difficult for me to keep track sometimes. The above post is accurate. And the only thing that was left out was that before 2014 I was on Ropinirol and had been for about 10 years. I did start to augment on the Ropinirol. But it’s been 10 years since I’ve taken it.

[SueJohnson in reply to Jrskyhook32]

My goodness you do keep moving around. I don't suppose you remember how much ropinirole you were on when you augmented?

One is less likely to augment on Neupro. The equivalent amount of ropinirole would be 4.5 mg but by the time you augment you will probably have moved somewhere else.😀

Seriously, it is certainly possible you will augment again so if there is anyway you can get the Neupro that would be better.

Your best bet would be to get off it of course and try something else but I gather you have tried methadone and belbuca. There is also gabapentin or pregabalin and you only took 800 mg which is a low dose. You can take as much as 3600 mg gabapentin or 600 mg pregabalin.

[Jrskyhook32 in reply to SueJohnson]

are there side effects with gabapentin at the 3600 mg level? I’ve noticed I definitely sleep better with it but there are also issues.

[SueJohnson in reply to Jrskyhook32]

There can be side effects with any medicine. I wouldn't advise going up as high as 3600 since if you need more than 600 mg you need to take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, you need to take the extra 6 hours before bedtime etc so once you reach over 1800 mg it becomes ridiculous so one would want to switch to pregabalin since one doesn't need to divide the doses on pregabalin,

If you are having side effects on gabapentin, you might want to try switching to pregabalin. Although it is basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Divide the gabapentin amount by 6 to get the correct dose.

However there is no point in increasing the gabapentin while you are on a DA since it's not going to help you much while you are on a DA. If you decide to come off the DA, reply back and I can give you some advice.

[Purpleyam]

Hello, I found Pregabalin difficult with the adverse side effects. Weight gain, groggy mornings, almost felt impaired. Cranky too! And very sensitive skin. I'm on Gabapentin and feel very good. Maybe give it a go for awhile??

[DogsCatsFamily in reply to Purpleyam]

Thank you for sharing that, I did read that some have difficulty with one or the other and so far even though I'm not up to the full dose until I get completely off of the Ropinirole I haven't had any issues with the Gabapentin.

[Hublot]

hi, I was on pramapexole for a number of years , unfortunately it stopped working, my neurologist sent my doctor a list of various other medications, we started with gabapentin but the side effects I couldn’t cope with, I felt dizzy light headed brain fog, couldn’t focus, my doctor prescribed Pragabalin, started on a low dose over a couple weeks the dose increased I’m

Now on 300mg, which I split into 2 doses 150mg about 7pm and 150mg just before going to sleep and this is working,

I had a lot of help with splitting the dose from here on the forum.

[DogsCatsFamily in reply to Hublot]

Thank you for your input, I really appreciate it. I’m trying to determine which is the best relief once I’m off the Ropinarole. Everything helps in piecing it all together as you know from your experience.