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.

[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.