Help please

[Mittons]

I've been in 2 x 88 microgram of pramipexole for about a year, I'm anemic and have just been prescribed ferrous fumarate 210mg a day, I have hated the pramipexole it's made me gain weight, dizzy and isn't really working now, so I have gone back in to gabapentin, first night, last night took 300mg of gabapentin didn't work so took another about an hour later, didn't work so took a codeine 30mg, doctor hasn't told me to taper off the pramipexole, just stop and switch, how long till I start sleeping again please I'm shattered

[SueJohnson]

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

Yes you need to taper the pramipexole and the gabapentin won't work until you are off the pramipexole for several weeks and your symptoms have settled. If you stopped pramipexole, go back on the dose you were on and let your symptoms settle.

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 post back here as the advice will be different.

To come off pramipexole, reduce by half of a .088 tablet 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 to increase your codeine 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.

Ropinirole and pramipexole 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 it but they are not uptodate on the current treatment recommendations.

The beginning dose is usually 300 mg gabapentin which you are already on. Normally you should 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 you are off pramipexole for several weeks 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 ."

You mention that you are taking iron but have you had your ferritin checked? If so what was it? You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.

It is important to know your ferritin because you might need an iron infusion which will bring your ferritin up much faster and will help in your withdrawal.

If your ferritin wasn't tested 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.

If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness.of the blood thinners and of the iron so check with your doctor. Otherwise, take your iron tablets with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.

Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.

If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after.

Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.

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.

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...

[Mittons in reply to SueJohnson]

Thanks so much, I was originally on gabapentin but I saw d I needed to up the dose to 600mg and then they said, pramipexole was better so changed me, I didn't want them change but the doctor insisted instead of just increasing my gabapentin 😡 so I can take both for my w and follow ur plan, just confirming I'd read it right

[SueJohnson in reply to Mittons]

Yep

[Oscarcat63]

Hang in there.

I'm pretty new here myself, but Joolsg and Sue will help !

They are the experts.

[Joolsg]

This is exactly why UK doctors need to go back to school and learn the basics of RLS.Iron deficiency is the main cause of RLS. If your doctor knew this, and treated the iron deficiency first, you would probably be RLS free and not have had to start that poison.

Dopamine agonists aren't first line treatment amongst experts ( hardly any in the UK). Find your results and post them

Serum iron needs to be above 60ųg/L and serum ferritin above 100ųg/L.

As you are anaemic, take the iron tablets every other day. That raises levels faster as it fools hepcidin, a chemical that blocks iron absorption.

Then follow SueJohnson withdrawal schedule. You reduce slowly.

The gabapentin does NOT help RLS while you're still on Pramipexole. It starts to work around a month after the last dose of Pramipexole.

You may be able to get an iron infusion on the NHS if you live near a hospital that is aware of the link between low brain iron and RLS. Otherwise, you can send your blood test results to the Iron Clinic in Harley Street, and they will do a private iron infusion for around £800. They also have a clinic in Manchester.

During withdrawal and until gabapentin starts to work, you will get little sleep.

A low dose opioid like codeine 30mg, tramadol 50mg or oxycodone 10mg can help settle withdrawals at each reduction of Pramipexole.

[Mittons in reply to Joolsg]

I can't seem to post a screenshot of my results as I have more than one pic?

[Mittons]

Thanks for that, I've had RLS for about 15 years with and without anemia, it just gets worse when I get anemia I have very heavy periods so it happens every so often, I'll have a look at the schedule now and follow that, uk doctors really don't get it, your absolutely right, I'll post my blood results now

[Joolsg in reply to Mittons]

Professor Toby Richards at the Iron Clinic is great. He explained that most women in the UK are iron deficient because of decades of menstruation and pregnancy. Each pregnancy uses up 1000mg iron.

[birdman74]

I was taking Gabapentin for a few years together with a 24-hour Neupro patch. Finally, my specialist asked me if the Gabapentin was effective and I had to reply that I wasn't sure. She suggested that I came off and there was no difference. I am told that Gabapentin is effective for some sufferers. At the moment I use the patches each day and take Codeine in the evenings. However, I am thinking of leaving off the Codeine as am not sure that they do much. The Specialist has suggested that I try Pregabalin but I am currently reading up on the side effects and have not made up my mind. What I am sure of is that the patches are effective for me as I suffer even more if I forget to change them for a day. They are not a cure-all as I am on my feet most of the day and, very often, through the night. It's a terrible affliction. Best of luck Mittons

[Mittons in reply to birdman74]

I've never heard of the patch you mention what does it do? Are you uk based? I only ask as some things aren't available in uk

[birdman74 in reply to Mittons]

Mittons, I am UK based and the patches are available in this country. They were recommended to me by a Neurologist that I see two or three times a year. The Box describes it as "Neupro 4mg/24h transdermal patch" and it contains Rotigotine. The patches are about 45mm square and, as I said, you place one on some part of your body each day. Rotigotine is another dopamine argonist used, normally, in the treatment of Parkinson's disease. There are side effects but none that effect or bother me. While it is not a cure-all it does benefit me - I am a lot worse if I forget to change the patch. It hasn't worked tonight!

[SueJohnson in reply to birdman74]

Neither Gabapentin nor pregabalin will help much if at all while you are on the Neupro patch.

Ir sounds like you are suffering from augmentation if you are very often on your feet at night plus a 4 mg patch is equal to 6 mg of ropinirole or one and one half the maximum dose. I strongly advise you to come off it as it will only get worse.

You can do the reduction in one of 2 ways. Using a 1 mg Neupro patch cut it into sixths. The easiest way is to draw lines on it. This will equal the .25 mg reduction since 1 mg of Neupro = 1.5 mg ropinirole,. Or you can switch to ropinirole. Multiply the dose of Neupro you are taking by 1.5 to get the correct amount. Since you can get ropinirole in .25 tablets this is the easier way to reduce.

To come off ropinirole , reduce by .25 mg 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. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

Ropinirole and pramipexole 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 it but they are not uptodate on the current treatment recommendations.

The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off ropinirole (pramipexole) although it won't be fully effective until you are off it for several weeks. After you are off ropinirole for several weeks 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 split the doses with 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. 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 don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done.You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.

If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 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, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, 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.

[birdman74 in reply to SueJohnson]

Sue. Thank you so much for your reply to my posting regarding a change in my medication, namely the possible addition of Pregabalin to the Neupro Patched that I already use. Your reply was very informative and very much appreciated. I have a lot to think about and so many questions to have answered. Unfortunately, I saw my Neurologist a week ago and will probably not get a chance to speak to him for ages. That's for me to solve. Once again thank you very much for your time.

[birdman74 in reply to SueJohnson]

Sue, I have now read and re-read your reply and, as I understand it, you are recommending that I come off the Neupro patches by either of two ways: by gradually reducing the size of the patches over a long period of time or by changing to Ropinirole and reducing the dosage of that, again, over a period of time.

You say that there may be a degree of suffering that may require a low-dose opioid. Having come off the Neupro patches your recommendation is for me to turn to Gabapentin or Pregabalin but I am fairly sure that I have tried Gabapentin and I found it ineffective. That leaves Pregabalin which is what my Neurologist has recommended, although in addition to the Neupro patches.

I should start with a 50mg dose of Pregabalin three weeks before I am off Ropinirole.

Once I’ve been off Ropinirole for several weeks, then I increase the dose of Pregabalin by 25 mg every couple of days, until I find the dose that works. The Pregabalin should be taken 1 to 2 hours before bedtime as the peak plasma level is two hours.

According to the Mayo Clinic Updated Algorithm on RLS, you say, “Most RLS patients require 200 to 300mg Pregabalin.”

You go on to ask about checks on my Ferritin and I can confirm that I have fairly regular checks but I rely only on the Doctor to tell me if levels are OK. You go into more detail and I will now ask more questions of the doctor.

Your long list of things that affect RLS was interesting. I have tried leaving off several of the things like caffeine, sugar, and alcohol without any success but will try and identify some more. It is quite difficult to establish any kind of pattern as I do not get any breaks where I am not walking around. Because of a lack of sleep I am always very tired and, of course, that makes it worse. I am 88 years old so do not work other than tend the garden and play around in one of my three garden sheds - I have several hobbies so that I always have something to occupy my brain.

Again your list of things that can improve my condition is very interesting. Some I have tried but not found anything as yet.

Other than the Rotigotine the other medications that I take are:-

Perindopril 4mg

Simvastatin 20mg

Carvedilol 3.125mg

Edoxaban 60mg

Codeine (45mg at 5.00pm and 60mg at 10.00pm)

Once again, thank you for your time and interest.

[SueJohnson in reply to birdman74]

Simvastatin is a statin and statins make RLS worse for most.Nustendi is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS. And then there are Triglide (Fenofibrate, Fibricor, Lipantil, Lipofen, Supralip) and Bezafibrate (Bezalip) which are not statins which seem safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.

If you take gabapentin or pregabalin you should be closely monitored as it can raise the bad LDL and lower the good HDL.

Carvedilol is a beta blocker and most beta blockers also make RLS worse for most. Perindopril, however is fine. Some medicines that are also safe for high blood pressure are, Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Clonidine can actually help RLS. Discuss these with your doctor. And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res....

Edoxaban is OK

[birdman74 in reply to SueJohnson]

Thank you for the additional information Sue. I feel suitably armed to go and see my doctor again. He has never mentioned anything about conflicting medications.

[Mittons]

I really want to get on the dopamine argonist that's why I'm getting off pramipexole, I had to give in at 3am after 4 days of no sleep, I'm gonna have time wean myself off like they said on here just thought I'd be able to do cold turkey but it's not happening 😭

[birdman74 in reply to Mittons]

4 days without sleep - that's no fun. Do you have to walk around all the time like I do? I'm no neurologist, but if you get the chance to try the Neupro patches, I would recommend them or at least try them.

[Mittons in reply to birdman74]

Yer constantly walking around house all 🌃 ght it's soul destroying

[Mittons]

No HRT I don't handle hormones well, yes I take fluxetine no coming off that tho I'm afraid, I have been taking the iron before bed on an empty stomach not helping as yet, my legs have settled a bit now that I've started taking a tablet of pramipexole again so I'll just do it slowly, I work shifts so can't take tramadol as I can't shake the heavy head in time for my early shift

[Mittons]

Wellbutrin is not prescribed in uk for depression only to stop smoking as it can give suicidal thoughts, I did have it years ago to stop smoking myself, weird dreams is all I can remember it was about 14 years ago