Years of RlS

[BettyRae]

I’m 80 yrs old and have had RLS since I was around 14. I’ve take different medication over the years. Obviously my RLS is genetic. My mother and grandfather both had mild symptoms. Mine are severe. At this time I am taking Horizant 600 mg, pregabalin 150 mg and ropinirole 1 mg at 5 pm. Oxycodone 5mg at 2 am and 2 pm. Where will I go from here? My neurologist had tears in her eyes the last time I saw her. Scary!

[TimeEnd]

I also have had RLS for over 5 decades now. The best solution I’ve found, after years on a variety of drugs and pain relievers, is a semi-opioid that your neurologist may not know about. It is often now the first thing tried, rather than the last resort (as it used to be). That drug is called Belbuca Buccal (generic buphrenorphine). It has enabled me to live an almost normal life, unlike the issues with other drugs for RLS that have put me in the hospital with cardiac symptoms. The only thing I’m watching with Belbuca is that it slows breathing, and if you are dealing with apnea, you need to be very aware. Blessings to you in your search for solutions.

[Joolsg in reply to TimeEnd]

I agree about Buprenorphine. But FIRST BettyRae must get off that 1mg Ropinirole.

[Joolsg]

BettyRae,I've seen your replies before. I had NO idea you were still on 1mg Ropinirole.

You need to see a new neurologist who will work with you to get you off the Ropinirole.

The other drugs are a complete waste of time (AND MONEY@!!). This neurologist is throwing meds at you like a bandaid to fix open heart surgery.

They cannot help cover the severe, worsened RLS caused by that 1mg Ropinirole.

It will upregulate your D1 receptors ans cause every dopamine receptor in your body to scream out for its hit of dopamine.

So you need to get OFF it.

If you're near Dr Buchfuhrer in California, Dr Berkowski in Ohio & Florida, Dr Ondo in Texas or Dr Earley in Maryland- see them.

rls.org has help groups for US members. Join now and find another doctor.

Getting off Ropinirole will be tough BUT it will resolve the RLS.

Then- the Horizant, pregabalin and oxycodone could be reduced and just one drug will suffice.

You are WAY overmedicated- yet the elephant in the room hasn't been addressed by this neurologist.

As Dr Buchfuhrer says, 95-98% of RLS patients can be symptom free with the RIGHT doctor using the RIGHT tools.

You have the wrong doctor using the wrong tools.

[dancer2 in reply to Joolsg]

Sorry to but in on this text, but you know anyone near Rockford, IL could be the RIGHT doctor?

[Joolsg in reply to dancer2]

relacshealth.com/

As you're not too far from Dr Berkowski, contact him to see if you can have tele medicine appointments after the first face to face appointment.

He is absolutely brilliant.

And SueJohnson may have a good doctor nearer to you.

[dancer2 in reply to Joolsg]

Thank you.

[SueJohnson in reply to dancer2]

In Chicago I have :

Dr. Mari Viola-Saltzman - NorthShore University but there may be a long wait for an appointment but you can try and also be put on a wait list

Dr. Babak Mokhlesi. with Rush medical center -Nikos64 said he is a great doctor and highly knowledgeable about this disease

[dancer2 in reply to SueJohnson]

Thank you.

[BettyRae in reply to SueJohnson]

Thank you

[SueJohnson]

You are suffering from augmentation from ropinirole. 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. This means you need to get off it as it will only get worse.

First off check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut.

If you are not on the slow release ones or once you switch if you are suffering greatly now I suggest you add a quarter tablet of the ropinirole and let your symptoms settle for a few days.

To come off ropinirole reduce by .25 mg every 2 weeks or so. Ask for a prescription of these if needed. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need to increase your oxycodone temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

The pregabalin and Horizant won't help much until you are off ropinirole and your withdrawal symptoms have settled.. They may or may not help once you are off since you have been on ropinirole for a long time.

If not you can increase your oxycodone or switch to buprenorphine as TimeEnd suggested. The usual effective dose for oxycodone according to the May Updated Algorithm on RLS is 10 to 30 mg.

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. 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.

[SueJohnson]

If you tell me where you live I may be able to provide you with the name of a knowledgeable doctor as I have a list for most states.

I forgot to add that if the horizant and pregabalin don't work, you need to reduce them very slowly to avoid withdrawal effects. On the pregabalin reduce by 25 mg every 2 weeks. Once off that ask for 300 mg horizant and reduce by that amount every 2 weeks.

[BettyRae in reply to SueJohnson]

New Baltimore, Michigan 48047

[Joolsg in reply to BettyRae]

relacshealth.com/contact-us

Call Dr Berkowski asap. He is the TOP doctor nearest to you. He can do telemedecine in Michigan after the first face to face meeting.

He is the co writer of the Mayo Clinic Algorithm and the writer of the new AASM guidance Ropinirole is effectively relegated to 'end of life scenarios' by the new guidance.

Dr Berkowski will get you off that Ropinirole and then sort out the other meds you have been over prescribed.

Good luck BettyRae.

You will get through this.

And once you are off Ropinirole, that intense, severe RLS will disappear.

[BettyRae in reply to Joolsg]

Thank you

[SueJohnson in reply to BettyRae]

Dr Berkowski is a top doctor but he doesn't take any insurance.

In Detroit there is Dr. Aaron Ellenbogen at the Michigan Institute for Neurological Disorders. He was recommended by PianoRunner who said he was knowledgeable about RLS and I also found him elsewhere listed as an expert.

If you can't get an appointment soon and are willing to go a little farther to Ann Arbour, there is Dr. Anita Valanju Shelgikar at the University of Michigan Sleep Disorders Center One of the authors of of the American Academy of Sleep Medicine (AASM), 2024 Clinical Practice Guidelines for the Treatment of RLS and who was recommenced by flobbest and will prescribe buprenorphine, the best opioid for RLS if you need it.

[flobbest in reply to SueJohnson]

BettyRae....

You have gotten great advice from the regulars here.  As Sue reported, I am under the care of  Dr. Anita Valanju Shelgikar at the University of Michigan Sleep Disorders Center in Ann Arbor Michigan.  I struggled with the monster for decades, but no more! Dr. Shelgikar prescribed Suboxone (buprenorphine + naloxone) which is a film that you place under your tongue once per day.  From day one, zero RLS!!!

There are some minor side effects such as itching, and slight constipation, which are easily managed.  It doesn't seem to matter what time of day I take the medication as it has a long half life of 25 hours.  I've been taking it at lunch time and that has greatly reduced the itching that I was experiencing at night when I took it at bedtime.

BettyRae, you are on the right track now.  Hang in there. There IS light at the end of the tunnel.  Stay the course and keep us apprised.  God bless.

Frank

[Niewiem]

I would cry too. Ur on 4 meds mate! Of course this is not what you wanted or did but docs do that. Don.t they as all ur meds are scripts. I know i.m not helping but im so sorry for yor situation. And whatever i.d say here for u o boy. U need a smart rls re-assesment....

[Simkin]

Gosh what a longhaul. Poor you.After trying everything including oxycodone I find the only thing that works for me is buprenorphine low dose & 300mg gabapentin.

[Eryl]

There is nothing genetic causing RLS but your epigenetics make you vulnerable to external triggers and if you can avoid those triggers you can avoid suffering RLS. The meds you have been taking have been just like taking an aspri for a headache instead of avoiding banging your head against a wall. The most common cause of RLS is inflammation caused by the food that we eat, go back to our primal instinct of eating just meat, fish, eggs, dairy if tolerated and a few vegetables, and avoid the refined vegetable oil and refined carbohydrates like bread, cakes, cookies and fruit juices and you'll probaby have frar less RLS if any at all.

[funkyday in reply to Eryl]

What do you mean by "there is nothing genetic causing RLS"? It is most certainly caused by genes. Where did you get that information?

[Eryl in reply to funkyday]

The genes do not control the RLS by themselves but outside factors (like your diet or environment) influence how the genes are expressed. sciencefacts.net/gene-expre...

[intermk]

I've had severe RLS that involves my arms and face at times and have had this problem since 1985. I am 71 y.o. now. Like most RLS sufferers I've been given numerous meds for this condition, none of which worked until on day when I discovered quite by accident that Oxycodone works perfectly well as a stand alone treatment for my RLS. I had a kidney stone at the time which the Oxycodone did not help. They gave me Meperidine (Demerol) which also did not help but worked longer to prevent RLS symptoms. So, they tried Hydroorphone (Dilaudid) which also did not help with the extreme pain of a giant kidney stone. However, it too worked well for the RLS issue. I spent the next two decades trying to get doc's to order one of the aforementioned meds to control my RLS and chronic pain. It never happened. But one day a very kind and helpful person from this site old me about a New York City doctor that had the answer. That answer was Buprenorphine (Bupr). Although many, including the manufacturer, say it's a great pain medicine, it doesn't help me at all with any type of pain. Perhaps because of my dose and the fact that it's only a partial mu agonist unlike the other narcotics mentioned above which are full mu agonists. What I have learned about Bupr is that it will lower your blood pressure (BP) significantly if you are on a relatively high dose such as 4 mg or greater per day. Keep a close eye on your BP no matter what your dose is until you know how your Bupr dose controls your BP, if at all. Also, Bupr decreases Adenosine which is a "chemical" in our bodies that has multiple functions. But know this: adenosine helps regulate sleep. Bupr lowers the adenosine level which creates a feeling of alertness and prevents or delays the onset of sleep. I had once taken my 6-8 mg dose of Bupr all at once in the evening and it kept my RLS at bay until almost 0400 every morning. But I never got any nighttime sleep. Doc's blamed this on Sleep Apnea. But through research I discovered articles about research done on rats with Bupr wherein scientists learned that Bupr decreases adenosine in rats. I decided to change my dose timing to mid day when I took 2/3 dose then the other 1/3 between 1400 - 1500. Withing three days I was sleeping at night once again and for the first time since 1985. I've been doing this now for almost two months and I stil get regular sleep even though my dose is not enough to let me sleep in until 1000. I'm awake at 0500 usually. Hopefully, my experience with Bupr will help some folks if not all. Honestly, there is no need to use any other medicine if you have moderate to severe RLS with arm and face involvement. And there is no need to be on a cocktail of meds for RLS alone. If you're not getting full relief with your current dose of Bupr, don't look for another med, ask your doctor to increase the dose. Also, to get the greatest benefit, ensure that you dissolve the tablets under your tongue completely and then wait for 20 minutes before eating or drinking anything. You can simply swallow the tablets and the Bupr will work but you will probably need to increase the dose because stomach acid interferes with Bupr absorption.