Gabapentin advice needed

[Jezee]

Once again I went to see a doctor about taking buprenorphine and he said that he was happy prescirbe this. He said that he prescribes his patients morphine sulphate tablets which work very similar. First he said that he would like me to try Gabapentin once again as the last time I tried them I only took them for a week and I said they didn't work. I agreed as maybe I didn't give them a decent go. He said to start on 100mg and every 4 days to go up by another 100mg going up to 900mg and if that didn't work he would prescribe me the morphine. I'm 2 weeks in and up to 500mg which I take around 2 hours before bed and although my legs aren't restless for some reason my right arm is making me go crazy as it's restless as hell and I've had very little sleep all week. I also find that it take at least 3 to 4 hours for my legs to settle and also I've never know a thirst like it. I've had a horrible week and even my work colleagues have comment on how tired I look. What should I do? Keep increasing the dose and hope the restless arm stops or slowly come off them. To be honest I'm not sure I can take anymore. I hope this makes sense as it's nearly 2am and I'm bloody shattered but my arm won't settle.

[SueJohnson]

Call the doctor and tell him what has happened and slowly wean off them. Normally it would be to reduce by 100 to 200 mg every 2 weeks but since you have only been on them 2 weeks you can go a lot faster. Perhaps 200 mg every week.

[Jezee in reply to SueJohnson]

Hi Sue, I rang the doctors secretary and explained to her. She said she would email the doctor and ring me when she got an answer but never did. I'll reduce them tonight. I got if 2 hours sleep last night. Thanks for the advice, always appreciated.

[Simkin]

I was on gabapentin & went up & up to 1,200 with no real RLS improvement so my GP agreed I could try on buprenorphine if I greatly reduced my gabapentin intake.So now I take 300mg of gabapentin & low dose buprenorphine with great success.

I wish you luck.

[BocaMom]

Gabapentin seemed to give me restless arm too and my theory is it was water retention. I’m completely off it over a year now with no real worsening of RLS (got my ferritin up).

[Horsham]

hi Jezee,I am on liquid morphine,5ml to 7 mls,it does help,

I am also on Ropinorole,I have good nights and bad nights, I

really can’t help you,on bad nights I hardly get any sleep.

[SueJohnson in reply to Horsham]

You should never have started ropinirole. It is no longer the first line treatment for RLS. Gabapentin or pregabalin are. NICE changed its guidelines in February to finally say this.

Up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin and pregabalin won't work nor might iron and it has been found that suffering from augmentation can lead to painful RLS which you don't want. And some experts believes everyone will eventually suffer augmentation. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment. Https://mayoclinicproceedings.org/a... Also check out the recently revised NICE guidelines

I strongly suggest you come off it.

Ropinirole (requip), pramipexole (Mirapex) and the Neupro (rotigotine) patch 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 them but they are not uptodate on the current treatment recommendations.

First off check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut if needed.

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. 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.

On the gabapentin or pregabalin, the beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks and your withdrawal symptoms have settled. After that 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 divide the doses on 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin)."

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 or antacids don't take it within 2 hours for the same reason (not sure about pregabalin).

Have you had your ferritin checked? If so what was it? This is the first thing a doctor should do for RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements 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 ferritin and transferrin saturation (TSAT) numbers and reply back here with them. 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.

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. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.