Opiod treatment

[4inthemorning]

I just started low-dose opioid treatment after being on ropinirole for six years. Looking for anyone’s experience and advice for this type of RLS treatment. I have fairly severe RLS at this point, taking 5mg for the first five nights currently and then increasing to 10 mg.

[Hidden]

Hi, it would be helpful to know which opioid you're taking.Also worth bearing in mind is that individuals can respond very differently to the same drug.

You can also search this forum by keyword using the search function at the top right corner of the screen.

[4inthemorning in reply to Hidden]

Thanks for that bit of navigation Guidance, I am new to this form. It’s oxycodone.

[Joolsg in reply to 4inthemorning]

That is a very low dose. The average dose of oxycodone for RLS as set out in the Mayo algorithm is 30mg. I suspect 10mg will not cover your RLS if it is severe so you may have to increase up to the average. Are you still on ropinirole?

Many meds like anti depressants/anti histamines can trigger or worsen RLS.

Did your doctor do full panel fasting blood tests? Raising serum ferritin above 100, preferably 200 can alleviate RLS for the majority.

[Joolsg]

Have you finished withdrawal from ropinirole?

As Amrob says, we would need to know which opioid you are taking.

I withdrew from Rop in 2016 and am now on 0.4mg buprenorphine.

We all respond differently to different opioids.

[4inthemorning in reply to Joolsg]

Thanks for all that info, I’m working with Johns Hopkins RLS group. And just getting started on the opioid treatment after tapering off ropinirole and then spending two weeks with no treatment at all. So they have me starting at 5 mg then 10. I’m at 10 now and actually it’s working pretty well finally. I mindful that the feedback here of eventually having to take higher amounts and appreciate all of the feedback.

[welschrispy in reply to 4inthemorning]

I am in Canada and have very serious refractive RLS. I am hooked on Pramipexole and although I have reduced my intake be about 90% I can't get off the stuff. Can you please tell me about the John Hopkins RLS Group. Is it expensive? how long is the program? What is the success rate? How long is the wait list? I would be very grateful for any information. Many thanks!

[4inthemorning in reply to welschrispy]

Johns Hopkins is not all that expensive as you don’t spend a lot of time in their office. Most of it’s done remotely Through their my chart software bulletin board after the initial visit.

It took me eight months to get the first visit, good group, but I’ll say there is still a fair amount of experimentation given the unknowns about RLS, and how differently it affects each person, and how each treaty regimen affects each person Differently. They were instrumental in helping me get off Ropinirol which was really really difficult but again, after the initial visit that was all done remotely.

I don’t know their success rate. At the moment I’m in the initial stages of using lower dose oxycodone and while it’s gone well at first, I can tell I’m going need to be on a higher dose as the symptoms are back at night.

Hope this helps.

[SueJohnson in reply to welschrispy]

The Johns Hopkins group is excellent but as mentioned it takes forever to get an appointment and it is across the country from where you live in Canada. A better option is the Mayo Clinic in Rochester, MN. Ask for an appointment with Dr Michael Silver.

[TeddiJ]

Hi. My 2 cents: 10 mg of oxycodone is low, as Joolsg said, and did not cover mine at all. I had to take more throughout the night, as well, until Dr. B said we had to switch because I was taking too much.

Oxycodone doesn't last long, either; only a few hours. Methadone and BUP last much longer. Perhaps your rls isn't as bad as you thought OR this drug works very well for you?!

[4inthemorning in reply to TeddiJ]

Thanks for all that info, I’m working with Johns Hopkins RLS group. And just getting started on the opioid treatment after tapering off ropinirole and then spending two weeks with no treatment at all. So they have me starting at 5 mg then 10. I’m at 10 now and actually it’s working pretty well finally. I mindful that the feedback here of eventually having to take higher amounts and appreciate all of the feedback. The two weeks that I was not on any drug demonstrated to me that the RLS is severe, but not as severe as others I’m reading about on this forum.

[TeddiJ in reply to 4inthemorning]

Great-you are in very good hands and also very lucky. Many in the US struggle to find the right help and have to travel to get it, waiting months for that first appointment.

Those 2 weeks might have been extra bad due to just having weaned off the ROP. In general, most people do not have to increase their opioid dose once they have found coverage.

[SueJohnson]

As Joolsg said improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

[4inthemorning in reply to SueJohnson]

Thanks for all that info, I’m working with Johns Hopkins RLS group. And just getting started on the opioid treatment after tapering off ropinirole and then spending two weeks with no treatment at all. So they have me starting at 5 mg then 10. I’m at 10 now and actually it’s working pretty well finally. I mindful that the feedback here of eventually having to take higher amounts and appreciate all of the feedback. We did two iron testing initially, and my level was quite high it almost 80 although I don’t know the other numbers that you’re asking about but will look for them.

[SueJohnson in reply to 4inthemorning]

You are lucky to have them as doctors. They are one of the Quality Care Centers of the RLS foundation and are one of the best.

[4inthemorning in reply to SueJohnson]

yes, fairly blessed, took me eight months to get an appointment with them! But I have to say that what I’m learning is that it’s still all experimentation as I see throughout the threads on the posts here. There is clearly not enough research money going into RLS. What I’ve learned is that the epigenetic piece here rings true for me as a childhood trauma survivor. The correlation between trauma and RLS is starting to become clear through all of the research that has been done. Hopefully that leads to better understanding of the actual medical aspect of it, and how to treat it, and perhaps eventually even cure it.

[joepublic]

I came off Ropinirole & am now on 5 Mg Targinact - after 2 years of not sleeping I have now doubled the dosage at night & all is going well and I am actually sleeping.

[4inthemorning in reply to joepublic]

it’s so amazing when we finally get a medication that works and to remember what it’s like to sleep for eight hours uninterrupted! It was like that for me with ropinirole for the first three years but as you know that doesn’t last and getting off it was by far the best thing for me although the process was over a month long and really didn’t sleep much during that month. but still worth it. Thanks for this feedback.

[joepublic in reply to 4inthemorning]

Yes I hadn't had a proper sleep for years & now I het 5-7 hours a night with two pills. Amazing.

[Simkin]

I am so interested as I too have just started 5mg of oxycodone and have been on it for 5 nights so I will be interested to compare notes.1. I have had 5 nights of no rls. Bliss. I have still woken a lot in the night but I think that is habit.

2. However I have become incredibly constipated. Did anyone else have that problem? And if so any remedies? Eat loads of prunes?

3. I am still on 2,100 gabapentin. When can I start lowering the dose? Is it too early after only 5 nights on oxycodone??

Any tips gratefully received.

[SleeplessinOR in reply to Simkin]

Simkin - constipation when taking an opioid is common. I have found that drinking a glass of CALM, which is a magnesium carbonate drink, before bed helps. I also make sure to eat foods with fiber in them such as grain cereals, veggies, etc. there are prescription medications that your doctor can give you if it becomes a real problem. I have also used a fleet enema on occasion. I am very careful not to let myself get too constipated. Opiate medications slow down the digestive system, which is why this can become an issue.

I am glad to hear that 5mg of oxycodone is helping you so much. I also take oxycodone, It definitely does help but, unfortunately, the relief is short lived for me. I find myself up at least twice a night needing to take more. I’m happy you are getting such great relief.

[Simkin in reply to SleeplessinOR]

That is a great help. Thank you.I have never heard of CALM. Are you in the States as they often have different medicines etc than in the UK???

[4inthemorning in reply to Simkin]

5 mg oxycodone didn’t work for me at all the first five nights, the last night or two I went to 10 mg and boom. I was sleeping eight hours straight for the first time in a very long time. Six tablets of psyllium husk solve the constipation problem. On the gabapentin topic I’m not sure why they put me on it as it did nothing and then asked me to stay on it. I’m fairly sure that that increased my weight a good bid although my diet didn’t change at all.

[Simkin in reply to 4inthemorning]

Are you still on the gabapentin then?If so how much?

I am on 2,100mg so would at least need to go down to 1,125mg or less I am sure.

[SueJohnson in reply to Simkin]

Since it is going to take you a long time to reduce the gabapentin and since it doesn't help you anyways, I would suggest you start now to very very slowly reduce it. As always discuss this with your doctor.

[Simkin in reply to SueJohnson]

My GP said if I could reduce the gabapentin that could only be a good thing so I agree the sooner I start the better.

[4inthemorning in reply to Simkin]

So after four nights at 10 mg Oxycodone It’s now not working very well, and can see that I will need to go to a higher dose.

[Simkin in reply to 4inthemorning]

Oh no!

[TheDoDahMan]

I've been doing great on 10 mg of methadone per day for over 4 years now. Methadone is stronger and lasts longer than Oxy, and seldom leads to tolerance at these low dosages.

[4inthemorning in reply to TheDoDahMan]

thanks for this, really good to know about as I can see that from others that OXY it doesn’t last very long, and I’m likely gonna bump up against that at some point.

[EWTPA]

I had severe RLS that was finally controlled by 5mg oxycodone at 12 noon and 5mg at bedtime. I also take an extra 5gm at dinner if I have alcohol. Works great for me. (The oxy initially caused some serious itching, but a journal recommended gabapentin for opioid itching, so I take 100mg gabapentin twice daily and it works!)

[Simkin in reply to EWTPA]

It sounds as if 10mg is the key. I will try & cope on 5mg & see how I get on.

[Eryl]

Kn my opinion opoids are not a greatment, they just try to hide the symptoms. They are akin to taking an asprin for a brain tumor.

[4inthemorning in reply to Eryl]

thanks for this post but I don’t understand. You’re implying that there is something that actually can cure RLS? I thought all the treatment protocols out there are just reducing and masking the symptoms. Would love to hear more from you on this if possible, as I’d rather not be taking oxycodone, but nothing else worked. I have a busy work schedule and getting consistent sleep has been the priority.

[Eryl in reply to 4inthemorning]

You don't 'cure' it, you just avoid the foods that cause it.

[4inthemorning in reply to Eryl]

i’ve heard all kinds of things about different diets and avoiding sugar and caffeine and alcohol. I’ve been a lifelong athlete so to speak and so don’t do caffeine and don’t drink alcohol And yeah, I got a little bit of a sugar problem, but I’m all yours if you know of other specific diet regimens, that can reduce RLS. Thanks for this thread.

[Eryl in reply to 4inthemorning]

I've eliminated my rls by avoiding inflammatory foods which are mainly refined carbs like sugar and wheat flour (esp white). I also avoid refined seed oils including margarine and only uze cold pressed olive oil, coconut oil, butter or sometimes animal fat. Have a look for a thread I posted last week about my experience with GPT4.

[4inthemorning in reply to Eryl]

Thanks for the input on the diet, really interesting.

[TheDoDahMan in reply to 4inthemorning]

If the previous reply from Eryl works for you, please let us all know!