My husband is on 8 mg of ropinirole ER a day (4 in morning and 4 in evening. He has been taking it for over 15 years and whenever he would start getting augmentation, he would just increase the dose. That always worked but it’s way too much.
We just moved to Florida and cannot find a good doctor for RLS. He just start going to a new one and he wants to put my husband on another dopamine agonist - rotigotine and unfortunately due to his stage four kidney disease, he cannot take large doses of gabapentin. He tried 600 mg for his kidneys 10 years ago and I didn’t do anything to help him.
I think a lot of his health issues stem from the ropinirole. We have heard the wonders of methadone and have tried to talk to several doctors about this switch, but to no avail, they say that it’s heavily monitored in Florida and there’s no way we would be able to get it for him.
He really does not want to be weaned off of one dopamine agonist to another.
Has anybody had the same issue and what have you done to solve it?
we went through the RLS.org to find doctors, but they are either not taking new patients or we will not have an appointment until 6 to 9 months out. Instead of seeing a neurologist, should we try going to a pain management center? He’s at his wits end and it is so frustrating.
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Dr Joseph "Andy" Berkowski - Ann Arbor, MI - associated with the RLS Foundation - does teleconference in Florida but I don't know if he can prescribe in Florida but he will share the results and his recommendations with your husband's doctor. Unfortunately he does not take medicare if he is over 65. Another idea is to ask if his doctor will prescribe any any opioid. You might want to print out the section on opioids in the Mayo Clinic Updated Algorithm on RLS and show it to his doctor at Https://mayoclinicproceedings.org/a...
he is on Medicare. So far none of his doctors are willing to prescribe opioids because of the extra paperwork they have to do to push it through the system. I haven’t checked a pain management center yet and that is my next step in this process.
Has he had his ferritin checked? If not when he sees his doctor, he should ask for a full iron panel. He should stop taking any iron supplements 48 hours before the test and fast after midnight. He should have his test in the morning. When he gets the results, he should ask for his ferritin and transferrin saturation (TSAT) numbers. He wants his ferritin to be over 100 as improving it to that helps 60% of people with RLS and his transferrin saturation to be between 20 and 45. If his ferritin is less than 100 or his transferrin saturation is not between 20 and 45 post back here and we can give him some advice. Improving his ferritin will help when he starts coming off the ropinirole.
Since he is just barely above 100, I would suggest he try to get it higher. He should take 325 mg of ferrous sulfate or 25 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if he have problems with constipation, iron bisglycinate is better. Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. Ferrous sulfate is cheaper and for most people does not cause constipation but iron bisglycinate is much less likely to. If takes magnesium or calcium take them at least 2 hours apart since they interferes with the absorption of iron. He shouldn't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if he takes his iron at night. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. If he takes thyroid medicine he shouldn't take it within 4 hours.It takes several months for the iron tablets to slowly raise ferritin. He should ask for a new blood test after 3 months.
Since the ropinirole ER tablets are designed to release the ropinirole over a 24 hour period, I don't know why the doctor has him is taking 4 in the morning and 4 in the evening. He could take 8 at any time. Also it is much harder to reduce the ER tablets as they can't be cut. I would ask his pharmacist what the equivalent dose of regular ropinirole would be and ask his doctor to prescribe that instead and then he could take half in the AM and half in the PM. Then when he is ready to come off it, he should reduce by .25 mg every 2 weeks or so. He will have increased symptoms. He may need to reduce more slowly or with a smaller amount. He should wait until the increased symptoms from each reduction has settled before going to the next one. He will suffer and may need to increase the opioid which he hopefully gets temporarily to help out with the symptoms especially as he nears the end.
that sounds good. He has a large supply of regular ropinirole from previous time. But I am not sure what the differences between 8 mg of ER and 8 mg of the regular will be. Will ask the pharmacist and maybe he can get smaller milligrams he can take. Hopefully the doctor can prescribe him some opioids. Thank you for your help. I read your answers to other people and I am so glad that you are on this group. It really does help! Keep up the good work.
They will prescribe Buprenorphine- an opioid used in a similar way to methadone.
They'll help your husband off that high dose of Ropinirole. Max FDA approved dose for RLS is 4mg so whoever prescribed 8mg has done your husband no favours.
Raising his serum ferritin above 100, preferably 200 may help as his RLS is clearly linked to his kidney problems.
As Sue says, get normal Ropinirole and reduce by 0.25mg every 2 weeks.
I quit ropinirole after being on it for about 10 years. Had augmentation the last 2 or 3 years but just thought the condition was getting worse. It was actually becoming painful too. My doctor suggested increasing the dose, which I did, but never went over 2mg. Fortunately I found an article about augmentation—I was not aware of this, nor was my doctor. Going off ropinirole will cause an increase in symptoms for weeks, and in my case depression as well. I'm so happy to be off of it, and my RLS isn't nearly as bad as I thought it was. The ropinirole made it so much worse, even thought it was a miracle for the first several years. Gabapentin did not work for me. I take hydrocodone (Vicodin), 10mg at the most daily.
So sorry your husband (and you!) are going through this. I really hope he can get on an opioid. Here's an excellent article for you:
I understand as I, too, was on 8mg of ropinirole. It took me nearly a year of getting off that drug. The withdraw was not easy. In fact, it was very difficult. I live in CA and saw Dr. Buchfuhrer online as I was unable to travel to his office. He would confer with my doctor at the local sleep clinic. My local doctor would prescribe his recommendations. I was on several opioids before I found a drug to agree with me. I am now on Buprenorphine /naloxone (sublingual film). (Methadone made me nauseous.) Finally, I am getting relief and feeling much better. My days and nights are improved. Please keep trying. It is worth it.
thank you for your comments, I know it will be very long and drawn out withdrawal I hope my husband can handle it. Did you have any weight loss or stomach issues on ropinirole?
I think he does online visits. He save my life, Requip was a nightmare and he got me off of it and onto the right medicine. I just looked to see who is writing the articles, he’s your man. It’s worth it. I had many doctors try to also prescribe me other ones similar to Requip, they will only make your RLS worse call Dr B. If he can’t help you he may be able to help you find somebody in your area who actually knows what they’re doing. Unless they specialize in RLS they just don’t know. He’s actually a pulmonologist but is one of the most knowledgeable MDs about RLS.
Update on my husband, he is down to 4 mg ropinerole daily and about to transition to a lower amount again. Has been lowering it down .25 mg every 2-3 weeks depending upon rls flare ups. He is taking iron supplements with c daily and has been doing well. He has adjusted the time of day he takes the ropinerole which has also made a big difference.He has not needed another drug yet but has talked with doctor about trying gabapentin when the ropinerole is lowered and something else is needed.
If it wasn’t for this group I don’t know how he could have done this. It has been amazing, he feels better, sleeps better and is not tired all the time. You gave us hope and a game plan!
Thank you all for you help and knowledgeable suggestions- it is greatly appreciated.
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