RLS

[108512bea]

I’ve had RLS for over 20 years. All that time I’ve been taking Mirapex and growing the dosage to where I am today 1mg 3 x day. However my symptoms lately seem to be not touched the medication? That reality seems to be where I am now. Looking for some help medicinally or what might be an alternative treatment ?

[SueJohnson]

It sounds like you are suffering from augmentation. You need to come off the Mirapex. It used to be the first-line treatment which is why so many doctors prescribed it but they are not up to date on the current treatment recommendations. 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 they never would have prescribed mirapex at

Https://mayoclinicproceedings.org/a... Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation numbers. You want your ferritin to be over 100. If your ferritin is less than 75 then take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach and preferably at night. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it interferes with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets To come off mirapex, reduce by .125 mg 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.. But in the long run, you will be glad you came off it. On the gabapentin, beginning dose is usually 300 mg gabapentin or 100 mg if you are over the age of 65. Start it 3 weeks before you are off mirapex although it won't be fully effective until you are off it for several weeks. After that 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. 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 of gabapentin 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 daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin.

[Joolsg]

Sue has set out all the information to get you started.You are on 6 times the maximum dose and have been badly let down by the doctors who have negligently prescribed such a high dose. (You may want to take legal advice and consider taking action as no one should be on that high a dose).

I suggest you join rls.org in the US so you can find a help group near you and recommendations for a neurologist who knows about RLS. This is a UK based help site - so we don't have as many US members.

Where are you? We do know several experts based in Texas, Boston, Baltimore and California but the US foundation has more info on US help groups.

You will need to get off Mirapex as you will be in full blown augmentation of symptoms on such a high dose. Augmentation means an increase in severity of RLS symptoms, starting earlier and often affecting other body parts. You'll need to reduce very, very slowly over a 12 month period with help. You may need an opioid and cannabis to deal with the withdrawals.

Take control now and educate yourself fully. Most doctors know zero about thid disease. Read the Mayo algorithm and also buy ' Clinical Management of RLS' by Dr Buchfuhrer, Lee, Allen & Hening, second edition.

It's slightly out of date but the Mayo algorithm fills the gaps.

Reduce very, very slowly and when you off Mirapex you will get you life back.

Raising serum ferritin can help and make sure you're not on.other meds that worsen RLS like anti depressants, anti histamines, statins, beta blockers, PPI gastric meds.

[LotteM]

I can only second Sue and Joolsg. Do some reading on this forum and you'll learn a lot vert quickly. It helps to take control.

[SueJohnson]

Also, what medicines and over the counter supplements are you taking? If you list them I can tell you if any make RLS symptoms worse and if so perhaps give you a safe substitute.

[108512bea in reply to SueJohnson]

Hi Sue thanks for your in-depth response. I appreciate it very much.I take the following medication:

Mirapex

Losartan

Fenofibrite

Metformin

Vitamin D

Vitamin C

Occasional ibuprofen and extra strength Tylenol

[SueJohnson in reply to 108512bea]

Losartan makes RLS symptoms worse in many people, A safe substitute is Propranalol but check with your doctor. There is no point taking iron twice a day as it does not lead to a greater increase in absorbable iron. Do take it at night.

[108512bea in reply to SueJohnson]

With all due respect….what is your background?

[SueJohnson in reply to 108512bea]

I went through what many others did. I augmented on ropinirole and was then put on gabapentin and my symptoms are now completely controlled. I am retired and decided to learn everything I could about RLS and pay it forward by helping others.

[108512bea in reply to SueJohnson]

Also I take iron twice daily