"Talk to your doctor" resources

[Steenslaw]

I am searching for something to provide my doctor about my restless leg syndrome. I have requested her help with getting off of prami and she will be doing some research before our next appointment. I know that I've seen people talk in this group about medications and how they are no longer the first line treatment. I can't seem to find that information in my online searches. Any direction someone can point me to?

[SueJohnson]

This is my usual advice for someone on a DA.

Ropinirole, pramipexole (Mirapex) and the Neupro (rotigotine) patch are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not uptodate on the current treatment recommendations.

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

To come off pramipexole, reduce by half of a .088[.125] tablet every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid 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.

On the gabapentin or pregabalin, the beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.

Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to divide the doses on pregabalin)

Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin)."

If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium or antacids don't take it within 2 hours for the same reason (not sure about pregabalin).

Have you had your ferritin checked? If so what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. 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. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.

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 uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.

Other resources are rls-uk.org/

jcsm.aasm.org/doi/pdf/10.56...

relacshealth.com/blog

I also recommend you join the Restless Legs Foundation at rls.org especially if you are in the US. An international membership is $40 and they have lots of information on their site and a monthly magazine

[Steenslaw in reply to SueJohnson]

Thank you! I sent the Mayo Clinic link to her. She is my new PCP and not the one who prescribed the DA. I’ve been on it since maybe 2018….

[SueJohnson in reply to Steenslaw]

Who prescribed the DA?

[Steenslaw in reply to SueJohnson]

One of my former primary care doctors.

[SueJohnson in reply to Steenslaw]

And who was that?

[Steenslaw in reply to SueJohnson]

Dr. Lucinda Griffith

[Joolsg]

rlscurbside.org/

Your doctor can consult curbside & get advice from top experts.

rls.org is also excellent. You can become a member.

[rlswarrior]

Make sure to bring both a copy of the Mayo Clinic Article someone else mentioned ont he management of RLS AND the new guidelines front the American Academy of Sleep Medicine that came out this past fall. They ruled conditionally AGAINST dopamine agonists. Many doctors, even general neurologists, are not up to date on this. Do not just hand it to them. Read it ahead of time and figure out what applies to you and make sure you can articulate this at the appointment and refer back to the articles. Highlight the most important information. You are often better of working with one of the quality RLS centers listed in the RLS Foundation Website because they are more familiar with RLS, but if that is not possible you must advocate yourself. Assume the doctors are not aware of the guidelines for treatment, but be careful how you present the information. Some doctors are not comfortable when a patient may know more than then on a topic, while others are comfortable enough in their shoes to listen and learn from a patient. You can also Google articles on augmentation or join to RLS Foundation to gain access to their information on augmentation. There is also RLS curbside, which is a free online discussion board for doctors to discuss complicated RLS cases. You can provide that to your doctor to help him/her learn. My doctors were not knowledgeable about what to do and I tapered off on my own. By the time I got to an RLS quality center, the doctor was surprised I got off of the meds on my own and infuriated that other doctors were unaware of the realities of RLS or were not willing to learn. He tends to transition patients from dopamine agonists to gabapentin or pregabalin. He will use opioids when needed. There really are not many choices for us once we hit opioids. I cannot see a doctor getting upset at a patient asking to switch to gabapentin and t pregabalin, so I think your doctors should be receptive if you suggest those meds. They will certainly want to wait on opioids until they get to know you better and have tried everything else.

[Steenslaw in reply to rlswarrior]

My new doctor was very receptive to my sending her information as she does her own research….she was also going to work on getting a consult with a neurologist before our next appointment, I was really pleased with her open mind to helping me get off this medication

[rlswarrior in reply to Steenslaw]

That is fantastic. In case the neurologist is not up to date (this is actually pretty common), just make sure you understand what should happen so you can advocate for yourself if the neurologist does not come back with constructive ideas. You shouldn’t ever have to go off dopamine agonists alone or without help.

[violetta254]

Can you tell us her name since she sounds pretty open-minded?

[Steenslaw]

Dr. Anna Mikulic in Beaverton Oregon