Severe RLS in Las Vegas, NV

[2024LilRap]

Hello....my GP doctors have been treating my RLS with ropinirole (augmentation), pramipexole (various addictions) and most recently gabapentin (ineffective) over the past 23 years. I have tried neurologists and vein drs but no one displays a strong desire to help me minimize or eliminate my RLS. Does anyone know of a great dr in Las Vegas, NV, who has a great track record for treating RLS? Thank you so very much. I'm desperate!

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

Dr Mark Buchfuhrer at the Quality Care Center at Stanford 11480 Brookshire Ave #108 Downey, CA 90241. [phone] is one of the worlds best doctors. You would only have to see him in person every 6 months and he will prescribe opioids that van be filled in Nevada.

[2024LilRap in reply to SueJohnson]

Hi Sue. Thank you for this contact information. I will reach out to his office.

[SueJohnson]

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 and 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.

Are you off ropinirole and pramipexole?

Were you taking gabapentin when you were still on either of those? If not how much did you take?

Are you familiar with the Mayo Clinic Updated Algorithm in RLS. It is the bible for treating RLS. If not check it out at Https://mayoclinicproceedings.org/a...

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.

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, C, 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. Keep a food diary to see if any food make your RLS worse.

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.

[2024LilRap in reply to SueJohnson]

Thank you so much for your help and concern!!!!

No, none of my doctors have checked my ferritin. I have an appt with my vein dr tomorrow and I will request the test. This same dr is trying to wean me off of pramipexole (which was prescribed by my GP dr in 2017). It's not going well. I am currently up to 600 gabapentin along with the reduced pramipexole 0.75 to 1 each night (1/2 in early evening and 1/2 at bedtime). I tried to reduce it more but my legs didn't like it.

I am taking other rx's.....listed below:

Thyroid:

• LIOTHYRONINE SOD 5 MCG TAB TABLET 1/am

• LEVOTHYROXINE 100 MCG TABLET 1/am

High Blood Pressure:

• VALSARTAN-HCTZ 160/25 MG TAB TABLET 1/am

Anti-depressant: (since 2021)

• ECITALOPRAM 10 MG TABLET

Restless Leg Syndrome:

• PRAMIPEXOLE 0.75 MG 2/pm

Hormone Replacement Therapy:

• PROGESTERONE 100 MG CAPSULE 1 /pm

• ESTRADIOL 0.05 MG PATCH 1/week

Thank you, Sue, for your help!!!!!

[SueJohnson in reply to 2024LilRap]

You are on one and a half times the maximum amount of pramipexole.

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.

To come off pramipexole reduce by half of a .125 tablet (ask for a prescription of these if needed) every 2 weeks or so. 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 a low dose opioid temporarily to help out with the symptoms especially as you near the end. If you see Dr Buchfuher he will probably prescribe methadone to help. But in the long run, you will be glad you came off it.

If that is still too much to reduce, you can get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.

Dopamine agonists like ropinirole and pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. Normally you would start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off pramipexole for several weeks. You are already taking it and I wouldn't increase it beyond 900 mg. After you are off pramipexole for several weeks and your symptoms have settled then increase it by 100 mg 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. 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.

If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason . According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ." It is going to be a long time before you are off pramipexole so save these instructions. Dr Buchfuhrer might want you to go straight to methadone and it will certainly help you get off pramipexole but I suggest you try gabapentin first.

As I mentioned before do 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...

[SueJohnson in reply to 2024LilRap]

Escitalopram is a SSRI antidepressant that makes RLS worse for most. The only safe antidepressants are wellbutrin and trazodone.

And as I mentioned before HRT makes RLS worse for most.

Time your medicines so that you take your thyroid medicine at least 4 hours from any medicines that contain aluminum, calcium, iron, magnesium. DAs like pramipexole inhibit TSH secretion so brings down thyroid hormones. Conditions associated with hypothyroidism (high TSH) can make RLS worse so want to bring it up. Individuals with hypothyroidism may have prolonged and exaggerated responses to opioids.

[2024LilRap in reply to SueJohnson]

Wow. I am literally in tears over all the information and support I am receiving from this Forum. I have been suffering with RLS and the various 'negative life altering' side effects from the prescribed drugs for 23 years. I am sooooo grateful for you to come into my life now. Thank you!

[Marlayna67 in reply to 2024LilRap]

Some antidepressants and HRT are known to exacerbate RLS. You definitely need to see an RLS specialist, and not a regualr doc. As everyone and I have said, Buchfuhrer is your guy!

[2024LilRap in reply to Marlayna67]

Calling him today. Thank you!

[Joolsg]

I agree with SueJohnson. See Dr Buchfuhrer. He will arrange iron infusions if necessary and prescribe appropriate meds.

[2024LilRap in reply to Joolsg]

Thank you, Joolsg. Have you seen this Dr?

[Joolsg in reply to 2024LilRap]

No, but he has replied to all my emails from here in London, UK, within hours.The man is a top RLS expert who runs a clinic in S. California and gives free advice by email. He really is a saint.

[2024LilRap in reply to Joolsg]

I can't thank you enough for sharing and caring!

[TheDoDahMan]

I have been a patient of Dr. Buchfuhrer for 5 years. His prescription of low-dose (10mg per day) methadone has saved my life. He made sure that I had tried other meds (alpha 2 delta ligands, i.e. gabapentin) first. Only some pharmacies in Las Vegas will fill opioid prescriptions for RLS - Walmart refused me, no questions asked.

[Marlayna67 in reply to TheDoDahMan]

Can confirm. Had this same problem when we were staying in Vegas.

[2024LilRap in reply to TheDoDahMan]

Great share....thank you very much!

[2024LilRap in reply to TheDoDahMan]

I just left a message at this office. Thank you!!!!!!!!

[Marlayna67]

Hello fellow Vegan! You are driving distance to Dr. Buchfuhrer in Southern California. He is an RLS specialist, as mentioned below by Sue Johnson.

[2024LilRap in reply to Marlayna67]

Thank you!!!!!