My neuro just prescribed .5mg of ropinirole. I can't take gaba due to breathing issues. I really, really don't want to start the ropinirole!I think my rls stems from inflammation due to lower lumbar issues and/or COPD.
So, last night I took 40mg of prednisone with dinner.
Slept all night (with a couple of potty breaks) and had NO rls.
First time in months.
Going to try 30 mgs of prednisone tonight.
Has anyone else experienced this with prednisone?
40 mg Prednisone is a high dose as is 30 mg. Can you tell us what Prednisone is prescribed to treat. Steroids like this will have a feel-good factor but are extremely severe on the body in many respects. Not a drug to take lightly.
I am well aware of the prednisone drawbacks.Have been taking them intermittently for years for COPD. Have a standing script for flare ups.
Am planning to taper with 30mg tonight, then 20mg etc.
My doc prescribed 10mg every other day but I stopped that and only take in emergency. No sleep for a month is an emergency. I didn't even know if it would work.
But it did.
I would be inclined to go the other way round.Start at 5mg and work up.
You are only getting your body used to a high dose and then telling it " just joking"😝😏
I just finished ( a month ago ) 7 fusions for copd exacerbation. Was getting 80mg dexamethazone then a 40mg tablet taper when I finished the infusions.Better to hit hard then taper off. Which is my plan.
Don't even know if it will help again tonight.
My thought better a pred regiment on occasion rather than going thru the ropinirole ordeal. I'm in 4th stage of copd. Quality of life is my goal at this point.
The British National Formulary says (of prednisolone)
"For Suppression of inflammatory and allergic disorders *(initial dose in severe disease)*: Initially up to 60 mg daily, dose preferably taken in the morning after breakfast, can often be reduced within a few days but may need to be continued for several weeks or months."
Then "For suppression of inflammatory and allergic disorders: 10–20 mg daily, dose preferably taken in the morning after breakfast, can often be reduced within a few days but may need to be continued for several weeks or months; maintenance 2.5–15 mg daily, higher doses may be needed; cushingoid side-effects increasingly likely with doses above 7.5 mg daily."
Lots of potential interactions and side effects - you may be fully aware, but depending on where you are you may or may not be able to access this:
bnf.nice.org.uk/drugs/predn...
Thanks for your response. I can't access the site as I'm in USA. My neuro will not prescribe opiates at all.
Maybe last night was a one off, I don't know. But if inflammation is causing the rls it would make sense that pred might help.
I'm grabbing at straws here as I don't want to take any DAs.
(When I entered prednisone into my search engine I didn't notice that it defaulted to prednisolone, although I note that "prednisone must be converted by liver enzymes to prednisolone before it can work".... it doesn't look as though prednisone per se is actually prescribed here. Although I understand that in the US prednisone is generally cheaper than prednisolone.)
I had to take it last night and this morning for a CT angiogram I had. Would you believe 16 cents for three 50 mg tablets?
I think I paid $15 for a 90 day supply of 10mg.
I used to take steroids occasionally for MS flare ups and I know you take it for COPD. Steroids didn't improve my RLS at all. As for the Ropinirole, obviously the main problem is augmentation which can happen very quickly for some people, even on low doses.
To avoid augmentation, the advice is to keep the dose as low as possible and ensure serum ferritin is above 100, preferably 200. Rotigitone has lower rates of augmentation than Ropinirole sp that is another, better possibilty.
If I were you, I'd ask your neurologist about Buprenorphine. Although opioids are often contra indicated for breathing issues, Buprenorphine has less risk of respiratory depression. Show this article to your neurologist and discuss fully, explaining that you wouldn't be able to cope with the withdrawal symptoms of Ropinirole if augmentation did occur.
bjanaesthesia.org.uk/articl...
I've tried to impress on my neuro that I'm very concerned about augmentation. I asked him, what do we do if I start to augment in a few weeks, his response was up the dose. Just what I didn't want to hear. He will not prescribe opiates at all. As I said to Chris, I'm looking for anything in place of DAs and since I know there are no opiates to be had.While I was on the fusions for a week and then maybe a few days afterward I had no rls at all, which is why I thought about trying the pred.
Thanks for welcome input!
Thanks I'll check out Rotigitone.
It's Neupro. Basically a ropinirole 24 hr patch
Yes, that is what Rotigitone is. But it is a dopamine agonist, so augmentation will occur eventually.I understand your neurologist is anti opioid ( most are), but, as I mentioned, Buprenorphine has a lower risk of respiratory depression because it is a partial opioid antagonist.
If your neurologist insists on prescribing a dopamine agonist, ask them :
1. How will they reduce risk of augmentation? ( keep dose to absolute minimum, do NOT increase dose if it stops working, raise serum ferritin above 100, preferably 200 by iv iron infusions).
2. Will they prescribe opioids to help you deal with withdrawal symptoms from Ropinirole/ Neupro when they happen, including close monitoring and switch to an alternative med?
We see dopamine agonist augmentation and withdrawal every day on this forum and the most common problem is that neurologists refuse to do anything except increase the dose, making things even worse. If this neurologist guarantees he will reduce risk of augmentation and help you get off DAs every step of the way, great. But I'll bet he cannot give you that assurance. Ask him to have a look at Andy Berkowski's website. Dr Berkowski sees thousands of RLS patients every year and his website contains videos explaining about augmentation. There's also a video on Buprenorphine, explaining that it is less likely to cause respiratory depression.
Another one to try is dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a... movementdisorders.onlinelib...
P.S. Isn't the taste of pregnisone terrible and it lingers in the mouth? I had to take it last night and this morning for a CT Angiogram. I found taking it surrounded by some really frozen ice cream and swallowing it that way completely eliminated the awful taste.
Funny I never taste anything. Wonder if it's the same thing. Pills are usually teeny things.I will investigate dipridamole.
Thank you!
Dipridamole is a heart muscle relaxer. Does look promising but can cause breathing problems.
Then I would go with Neupro. The Mayo Clinic Updated Algorithm on RLS says that "Factors favoring a dopamine agonist as initial treatment include . . . disorders causing respiratory failure."
Yes, I read that. Isn't neupro a 24hr patch?
Yes
I only have it at night. Hence the ropinirole. I'm still very hesitant to take it. But it is the middle of the afternoon.....
Another possibility is clonidine. See my post on it at healthunlocked.com/rlsuk/po...
Just to let you know I take morphine and it doesn't affect my breathing. I have intersistial lung disease. You may be ok on low doses of opioids .
I was just prescribed prednisone due to inflammation in my back and hands. After taking 20 mg I was completely unable to sleep at all for over 24 hours.
I have taken prednisone on occasion for severe sinus infection but it is a huge trigger for my RLS, made my legs go absolutely bonkers.
Hi Jelbia. Not sure where you are from in the world as you don’t say but your Neurologist is being a bit irresponsible, firstly because Ropinirole is no longer recognised as a good treatment owing to it being a Dopamine Agonist which causes Augmentation, a worsening of the condition after continuous use over a long period and secondly that the maximum dosage if prescribed for RLS is 4mg / day.
I was prescribed Ropinirole years ago and it has caused me torment so it was recommended that I I start to withdraw from the drug which I started on the 23 rd October 2022. I was on 6mg / day and am now on 1.75mg /day. It’s a hard journey so although I’m not medically trained I would not wish anyone else to experience what I’ve experienced with Ropinirole. I to am unable to take Gabapentin due to COPD but I would suggest you read the reports on Augmentation and treatment for RLS on the Mayo Clinic website, it’s American based research institute and is well known in medical circles.
I’m glad at least you have something that allows you to sleep but I’ve no knowledge of what you are taking. Good luck with your RLS treatment and I’m sure you’ll get further replies from people on the forum who are far more knowledgeable than me
Hi. So glad to meet someone else with a COPD issue.I can't take GABA either. tried but got dyspnea and insomnia. Neuro said to stop it and prescribed Ropinirole .5mg. I haven't started taking it for the reasons you mentioned above. I have read the Mayo Clinic info on rls.
The prednisone I took last night 30mg did not work as well as the 40mg I took the night before. Was up a lot.
So what do you take for your rls?
Opiates are pretty much out because of breathing issues.
I'm at a loss.
Hi rmbroadh. Glad you found the Mayo Clinic. I tried Kratom Red Vein powder either as a tea or just mixed with honey and swallowed it from a spoon but it’s not legal in this country and it’s effectiveness wore off. I only take codeine now twice a day early am when RLS wakes me up and again late afternoon. It seems to help calm my legs enough to see me through until I take my evening dose of 1.75mg of Ropinirole. Not sure what I’ll do when I come off Ropinirole 100%. but awaiting my appointment with a Neurologist. Good luck with your efforts.
How long had you been taking Ropinirole before you started augmenting? If you've already discussed this in a prior post I apologize.
Ps I'm from Florida
Hello again rmbroadh. I’m even more surprised that you’ve been prescribed 5mg Ropinirole as you live in Florida because when Ropinirole dosage for RLS was being discussed by I think, The World Health Organisation, the US wanted to restrict it to 1mg / day but in the end it was agreed the maximum dose for RLS would be set at 4mg / day. America is , I’m told, about 10 years ahead of the UK both in research and treatment of RLS so it may be worth providing your Neurologist with the information you found on the Mayo Clinic, so good luck 🤞
It's .5mg but I'm going to cut the pill in half even tho there is no groove and start with .25. First time tonight.
Hello rmbroadh. Oh dear, sorry I read it as 5mg not .5mg as you corrected me in your post. Having Cataracts sorted out first eye this month so hopefully will do better in future seeing the little dots, ha ha. You’ll probably be ok with such a low dose, but I’ve now decided that perhaps I need to keep my advice to myself, so sorry people if some my responses have seemed a bit nutty but that’s what 40 years of RLS can do to you as well as high doses of Ropinirole 🤣😂
Please continue to share. 😊
New here—coming off ropinirole 
Even more advise please!
Ropinirole and pregablin
RLS symptoms getting worse after being on Ropinirole for about 5 weeks?
DA withdrawal progress
