Getting worse

[dulciemary]

I have been on gabapentin for several years and this was just beginning to be less effective when I had a hip replacement. My rls got very bad and my gp added in ropinerole 1mg which I take at 8.30pm. This means a great night but increasingly I am having symptoms in the afternoon and evening. Any advice would be much appreciated as I am to have the other hip replacement in 5 weeks time.

[Joolsg]

Oh dear. Yet another GP doling out dopamine agonists.Did he take blood tests, as required by NHS & NICE guidance? Did he warn about Impulse Control Disorder and drug-induced worsening ( augmentation)? If not, that is breach of duty/negligence.

As you are experiencing daytime symptoms, that's augmentation and you need to get off Ropinirole.

However, as you're having another hip replacement, you should ask for normal release Ropinirole in 0.5mg pills and split the dose, taking 0.5mg at around 3/4 pm and 0.5mg an hour before bed. That MAY settle daytime symptoms temporarily, to get you through hip operation, but after surgery, you should start a slow withdrawal process.

Get full iron panel blood tests, and raise serum ferritin to 200ųg/L by pills or preferably iron infusions.

The hip operation can cause blood loss and therefore reduce iron.

Also ensure anaesthetist uses zofran as the anti emetic. Many anti emetics trigger RLS.

After your operation, come back and we can help you get off Ropinirole.

[SueJohnson]

You augmented before on pramipexole and now you are again augmenting in ropinirole which means you need to come off it. Reduce by .25 mg every 2 weeks. You know the drill from before.

How much gabapentin were you taking before the hip replacement which can make RLS worse as you found out? And were you taking it in 600 mg doses divided by 2 hours?

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 that has iron in it 48 hours before the test, don't eat 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.

Meanwhile 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, 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

[SueJohnson]

You may need a low dose opioid to help out.

For your next surgery Tell your doctors and anesthesiologists about your RLS and its symptoms and that you need your medicine and ask if there will be any drug interactions from what they will give you. Also talk with the patient representative ahead of time. Tell them not to give you any sedating antihistamines or sedating anti-nausea medications. Instead insist they use Zofran (ondansetron) for anti-nausea. You can download the Medical Alert Card that you can show your doctors, that tells them about the condition and what will happen after surgery and what medicines to avoid at rlshelp.org/ although you will need to join the RLS foundation. An international membership is $40, but they have some good information on it and you get their monthly magazine. However the safe antidepressants listed on medical alert card are not antidepressants: Lamotrigine, Carbamazepine, Oxcarbazepine. Also there is a 2 page handout "Surgery and RLS: Patient Guide" on the RLS Foundation website which is very helpful. Also "Hospitalization Checklist for the Patient with RLS"

[dulciemary]

Thank you. I am currently taking 600mg of gabapentin at 5pm and 9pm.

Ropinerole 1mg at 8.30pm.

I have also been on codeine 30mg or 60mg for night pain from both the surgery and the other hip awaiting surgery.

I realise from your reply that the anti nausea drugs I was given may well have made things worse so will be talking about this in my pre assessment.

[SueJohnson in reply to dulciemary]

On the gabapentin although it won't make much difference since you are on ropinirole. but once you are off it and you only have symptoms at night take 600 mg 1 to 2 hours before bedtime and 600 mg 2 hours before that. You have room to increase it as according to the Mayo Clinic Updated Algorithm for RLS "Most RLS patients require 1200 to 1800 mg of gabapentin ." After you are off ropinirole and your symptoms have settled increase it by 100 mg every couple of days until you find the dose that works for you. Take the extra 4 hours before the 600 mg dose you take 1 to 2 hours before bed.

[dulciemary in reply to SueJohnson]

Thank you. My Ferriton was 136.7 in January when I started the ropinerole. It was a little lower when first started on pramepixole in 2021 but still over 100.I tried magnesium in various forms, a weighted blanket, I don't smoke or drink alchohol, and we have a Mediterranean diet using mostly fresh ingredients before going to my GP and starting on pramepixole.

I take a multivitamin for over 70's ( I am 74) from Healthspan. It has a small amount of iron in it but I was not taking it when I had the blood test.

[Rlssleepy]

I'm so sorry to hear that. My doctors had me on a merry go round. I decide to take over myself. I got codeine tabs and problem solved. Does tylenol /codeine work for you?

[joker826]

I would ask you doctor if you can increase your gabapentin to tolerate the rls.

[Help1963]

Hi there Dulciemary , sorry for the late reply .. I've been on Gabapentin for approx. 3 months now, I started on 150mg three times a day and now I'm on 800mg three times a day (so a total of 2400mg per 24hr period) At that does it keeps a lid on the RLS pretty well, but it doesn't totally keep in under control as some nights (maybe two nights per week) I still get some symptoms. Although I'm not at the max does of around 3600mg I'm not going to increase any further just yet as I'm still getting my iron up to a good level to rule out that my iron levels are playing a role in my RLS / symptoms. it's also hard to take Gab at high doses as you should only take it in 600mg increments about 2 hrs. between each dose so I currently take the medication at 2pm, 4pm & 6pm hoping that I have good absorption by the time I go to bed at around 9pm. I can't pinpoint why some nights are great without any symptoms and some are very ordinary with mild - bad symptoms, there is nothing I can put my finger on as a trigger. I try and drink plenty of water during the day, I soak my feet in a hot water spa with magnesium in the water each nigh which promotes good circulation etc. Once I have my iron up to around 200 , and if I still have intermittent symptoms, I will increase the dose further to a point that for the best part keeps a lid on it most nights as I was on sifrol for many years and got bad augmentation towards the end, so I'm now totally committed to getting the very best results from gab that a possibly can .. Hope this info helps you in some way ..