Stuck with requip feeling hopeless

[Asquiva]

I am 58. I have been on Requip for 7 years. I had been on 1 mg and for the past two years have been on 0.5mg. I have not been able to reduce from 0.5 for any length of time. I also take gabapentin 600 2-3x day and tramadol 50 2x day though my scripts are for 3x day. My ferritin level is 160 with oral supplement. I desperately want to stop the requip. My MD only wants to increase it but I don’t.

I wondering if I could stop if I took 100mg of tramadol at night instead of 50 in morning and 50 at night? Maybe move the time of these meds back? I also have chronic pain in my back which is associated with and exacerbated by the RLS.

I work full time so I can’t go through what I see here (days without sleep, etc). Please please give me some advice. I’m feeling so hopeless. The hopelessness is causing depressing and I feel so trapped.

[SueJohnson]

When do you take your gabapentin? And the usual effective dose of tramadol is 100 to 200 mg so you could take it all at one time. On the requip, try reducing it by .25 mg every couple of weeks and let the increased symptoms settle before reducing further. You may need to reduce by less than that since you have had trouble reducing, but unfortunately you will suffer but it will be worth it. Once off it for a few weeks, take your gabapentin only at night since you shouldn't need it during the day. Take it 1-2 hours before bedtime. Since 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment at

Https://mayoclinicproceedings.org/a...

[Asquiva in reply to SueJohnson]

Thank you. That gives me some hope, though the whole thing still scares me a lot. I take the first dose of gabapentin around 1pm then 7 then 11pm. I can tolerate taking only 0.25mg of requip but when I do I wake up with horrible back spasms with and sometimes without rls. I am hoping a higher dose of tramadol might help that.

[Joolsg]

As Sue advises, reduce the requip by 0.25mg every 2 or 3 weeks and take the tramadol at night. Make sure you arrange a week off work for when you drop the last dose of requip so that the sleepless nights won't affect your work. Then, as Sue says, take the gabapentin and tramadol at night only as she has directed.Sometimes serum ferritin needs to be above 300 as many people with RLS see no improvement until levels are much higher. So keep taking oral iron supplements. FERROUS BISGLYCINATE is safe on the stomach. Take it last thing at night. Also make sure you're not on anti depressants, anti histamines, statins, beta blockers and PPI gastric meds as they all trigger/worsen RLS.

I suspect you will have a rough few weeks but once off REquip the really intense RLS will settle and you may be able to reduce the tramadol and just take the gabapentin at night.

[Asquiva in reply to Joolsg]

Thank you , that is helpful. What an awful way to spend a weeks vacation though 😜I will try that iron. Nausea is usually what makes me stop taking it but hopefully that kind works better.

[barbiedoneff in reply to Asquiva]

Nausea is rough with ropinirole. I take it about 7 pm, in order to fall asleep by nine. It’s so bad but I just roll over and go to sleep. Wishing you luck.

[67Waterman in reply to Joolsg]

Hi Jools! Can I ask why one has to take iron at night? I was never aware of that. I take 4 x 28mg iron bisglycinate daily, in one go, usually at lunchtime. Thank you x

[Joolsg in reply to 67Waterman]

Good question. There have been a few studies on iron and RLS and some show iron helps, others are inconclusive. Dr. Earley at Johns Hopkins is convinced that low brain iron in the substantia negra is the main cause of RLS.

Many studies have shown that taking iron once, every other day increases levels faster because it fools hepcedin, a chemical which blocks iron absorption.

There are also studies emerging that Vit C isn't needed to help iron absorption.

I believe the advice to take iron at night is so that it's taken 2 or 3 hours after the evening meal and because RLS follows the dopamine cycle. Dopamine levels fall dramatically in late evening and through the night so if iron is taken in the evening, it will have its greatest effect when dopamine levels are low.

Most information on iron for RLS is based on small scale studies and anecdotal evidence. Hopefully, rls.org in the USA will fund more studies. Sadly, there's no money available in the UK for any studies.

Iron pills and iron infusions have never made any difference to my RLS but there are many reports of life changing transformations. The US experts believe iron infusions dramatically improve over 60% of RLS, moderately improve 20% but make no difference for 20%.

hopkinsmedicine.org/neurolo....

[67Waterman in reply to Joolsg]

Thank you for being so clear and informative Jools. I will switch my taking of iron to 2 hours after food and every other day. Take good care of yourself. X

[Hidden in reply to 67Waterman]

Every other day taking of iron is an urban legend on here. You will raise your ferritin quicker by taking every day. Straight from Mayo Algorhythm

“A common oral iron regimen is 325 mg of ferrous sulfate (65 mg elemental iron) in combination with 100 to 200 mg of vitamin C with each dose to enhance absorption once daily or once every second day.”

I get complete relief from my RLS by taking 25mg of the bisglycinate on an empty stomach before bed. Relieves RLS in one hour after taking. Must be repeated every night if I want relief. If it’s gonna work for you this way you should pretty much know after that first night. Some people require more like 50mg. Good luck.

[67Waterman in reply to Hidden]

Wow... great. I will try. Thank you thank you.

[SueJohnson in reply to Joolsg]

Mayo Clinic says There are data from nonhuman primate studies that iron is taken up by the brain from the blood at higher rates at night than in the morning

[SueJohnson in reply to 67Waterman]

Mayo Clinic says There are data from nonhuman primate studies that iron is taken up by the brain from the blood at higher rates at night than in the morning

[Anguished]

Hello everybody's different but for me when I take tramadol it just makes it worse. For me it just makes my brain more tired and then I'm more exhausted because I wanna go to sleep so bad but my legs will not have it. I am very severe RLS. I just got off miraplex because because I do not like the way it makes me feel in the morning I feel so drained and so tired and so tired and if there's one thing I will not give up it's my mornings mornings sometimes I just stay straight up to the morning and then finally sleep for about an hour. I sure hope tramadol works for you though.

[ncrdisabled]

i have been on it for 12 years and now i am up to 2mg 3 times a day as i have restless legs in the daytime i like the drug but i thing i am going into augmenting as i am beginning to have break thru restless legs

[Joolsg in reply to ncrdisabled]

If you're on 6mg of requip and have RLS in the daytime, then yes, you have augmentation of RLS symptoms. Read the pinned post, watch the videos and start to research all you can as the more you know, the better treatment you'll receive after you get off it.To withdraw from such a high dose after such a long time, you need to reduce very slowly.

0.25mg every 3 weeks and while reducing, make sure your serum ferritin is above 100, serum iron above 60. Check you're not on meds that worsen RLS like anti depressants, anti histamines, statins, beta blockers and PPI gastric meds.

Find the best doctor you can in your area as you will probably need low dose opioids and cannabis to get through the withdrawal and you may benefit from an IV iron infusion. Once off Requip, you will probably need replacement meds like gabapentin or pregabalin.

Print off the Mayo algorithm and read fully as it is shows the best, most up to date expert guidelines. Show to your doctors if they are not already familiar with it.

mayoclinicproceedings.org/a...

[Jijsaw]

I wish that I could help you. I take 4mg of Requip nightly along with 400mg of Gabapentin. My legs are getting worse. Mine are bad, even in the daytime. I can hardly sit through church service sometimes. I can't watch tv or anything in the evenings. I live in a small town, and the doctors here don't seem to understand restless leg syndrome. I'm not trying to scare you but would like to see you get the help you need and in turn, maybe, I can find help. Good luck.

[SueJohnson in reply to Jijsaw]

If your legs are getting worse and you are on the maximum amount of requip, then you are augmenting and need to come off it because it won't get any better. To come off requip, 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. 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, it won't be fully effective until you are off requip 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. 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. 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 requip at

Https://mayoclinicproceedings.org/a...

[Asquiva]

Last night I tried to make a reduction to 0.25 mg. I fell asleep ok with the tramadol 50 and gabapentin 600. The problem is that I woke up at 2 am with hard leg cramps and rls in one leg only. Is this part of the withdrawal process? I’m at work now with 3 hours of sleep only.

[Asquiva in reply to Asquiva]

Update: I have now tapered down to 0.25mg of requip and getting ready to cut that in half. Am doing ok with the reduction and it’s been about a month on 0.25. My doc increased the gabapentin to 3600 per day which has helped. My only problem has been waking up very very early with rls. I’m worried about dropping further after reading posts here. I can’t take a week off work.

[SueJohnson]

Yes - you can try reducing by half of a .25 tablet, but even then it is going to be hard.

[Merny5]

You mentioned that you “have not been able to reduce” Is that because your RLS symptoms become unbearable or do you have other symptoms like depression or anxiety? Over two years ago I began the journey of reducing my medication from 9 mg Neupro. There were many times that I didn’t think I was going to make it, but I did! You can too! Use this forum for support. It is made of of compassionate, informative RLS sufferers. Good luck and keep us posted

[Asquiva in reply to Merny5]

Lack of sleep and waking up with pain and rls at 2-3 am is what makes me give up. I had the anxiety happen when I dropped from 1mg to 0.5 but now that isn’t the case, it’s just the torturous sleeplessness and eventually it turns into hopelessness/depression.

[Merny5 in reply to Asquiva]

I’m so sorry. It will get better. Don’t give up and perhaps you can look for a more competent doctor.

[Asquiva]

I am on day 4 of .25mg and now during the day may skin is crawling and I am lethargic and agitated simultaneously. And that is absolute torture. Please tell me this isn’t what withdrawal from requip feels like. It’s more than I can bear if it is.

[Ciduoc]

I take 600 mg of Gabapentin and I mg of requip at night. I never increase the requip. The combination works fine.