Gabapentin

[Simkin]

Sue, my GP is away on maternity leave so I cannot yet talk to him about opioids.In the meantime would you recommend I up my dose of 2,100mg gabapentin to slightly higher, doing the 100mg at a time to see if that brings me some relief?

[SueJohnson]

How are you taking your gabapentin now? How much and at what times?

[Simkin in reply to SueJohnson]

300mg at 4.30600mg at 6.30

600mg at 8.30

600mg at 10.30pm

[SueJohnson in reply to Simkin]

That's a tough one. I guess you could try it, but I really doubt that it would work especially since you are already taking a lot and the extra is taken so early. If you could switch to pregabalin which you could take all at one time at 10:30 it would be better, but with your doctor on maternity leave you might not be able to do that. However there must be someone covering for her so you could ask that person. The equivalent dose to 2100 would be 350 mg and you would increase by 25 mg. And then there is the likelihood that your dopamine receptors are permanently damaged and it won't work and the more you are on, the longer it will take to come off it. Another possibility is kratom. It is illegal in the UK but Joolsg said can buy from kraatje.eu/contents/en-us/d... and are discreet. Also can get from kratom.co.uk You want the red vein one.

[Simkin in reply to SueJohnson]

I would love to switch to pregablin but I had a bad reaction to it and the neurologist at the hospital said I must not take it again.Yes there are other doctors in the Practice but my wonderful GP knows my whole history.

He will be back on March 3 so not long to wait.

Or I could try the kratom "illegal" tea!!??

[SueJohnson in reply to Simkin]

Sorry - I had a note you had hallucinations on pregabalin, but missed it when I replied. Up to you whether you want to try kratom or wait until March 3rd. And you might not even get the kratom before then.

[robertff3401 in reply to SueJohnson]

In your reply to Simkin, you mention  dopamine receptors being permanently damaged. As I recently posted, I was on pramipexole for 30 years starting with a dose of 0.25 mg which was increased to 1.0 mg over that time period. Based on my doctor's recommendation, I then transitioned to Sinemet and have been on that for a month or so, but that gave me a rash. I've written all of that to you previously. I didn't learn of augmentation until recently. I was thinking of now switching to Gabapentin. Is it likely that I have permanently damaged my dopamine receptors and will not be successfful with Gabapentin. Would I be better off just changing to an opioid?

[SueJohnson in reply to robertff3401]

I would try gabapentin first. If that doesn't work then you could switch to an opioid. It can be difficult to get a doctor to prescribe an opioid. If your doctor prescribes gabapentin start it 3 weeks before you are off sinemet 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 or pregabalin 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 take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of them. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If the side effects prove too much or you reach 1800 mg and it still doesn't help come off it very slowly or you will have withdrawal effects. If you do it slowly you won't have any.

[robertff3401 in reply to SueJohnson]

If I begin the gabapentin 3 weeks before I get off Sinemet, how much gabapentin should I use as my initial dose? Would I then increase the amount of gabapentin 100 mg every couple of days during that 3 week period as well as after the 3 week period until I find the right dosage? I also assume that I would gradually decrease the amount of Sinemet to zero during that 3 week period. I just want to be sure that do this correctly. Thanks again for your valuable input.

[SueJohnson in reply to robertff3401]

Initial dose is 300 mg. No don't increase until after the 3 week period because it takes that long to initially be effective.

[Abookwriter2 in reply to robertff3401]

SueJohnson seems to be very well-informed. I recently (two weeks) tried cutting out sinement/levadopa as it was actually causing gout-and cut out proton pump inhibitors 45 days earlier as PPI's can cause rls. My exact advice from Dr. Buchfuhrer was to increase the oxycodone to an additional-to- 2 5 mg at 5:30 p.m. to one more at 8:30-9 p.m. I found myself sinemet/levadopa free since and NO rls at night or 3 a.m. to 5 a.m. Additionally, due to impinged nerve from cervical radiculopathy, I started taking gapapentin as well a week ago. NOW, I don't need the additional oxycodone. My goal is total control over the meds & rls, finding low-dose opioids the least damaging to my body chemistry. I wish you great success with the medications and pregnancy.

[robertff3401 in reply to Abookwriter2]

Thanks for that information. Getting all the correct medications and doses sorted out correctly isn't easy. Good luck to both of us! Thanks again.

[W0nk042 in reply to Abookwriter2]

Hi, quick question: do you have a source for proton pump inhibitors being an RLS trigger? My GP had me on PPIs despite my severe RLS, and we both missed that interaction. No wonder I had a bad flare-up!...

[Simkin]

I think I might wait and see what my GP says on return.Thank you Sue for as always helpful advice.

[Joolsg in reply to Simkin]

Dr. Buchfuhrer, a top US expert, has noticed that many RLS patients do not respond well to pregabalin or gabapentin after they have been on Dopamine Agonists.You have been on all 3 dopamine agonists and augmented on them all. Your dopamine receptors are probably permanently damaged. It happens to many of us.

Our RLS is then severe and refractory.

Low dose opioids work well.

You could ask your GP to prescribe a low dose opioid like oxycodone or codeine. A few of us are doing very well on low dose Buprenorphine. The pills come in 0.2 or 0.4mg, depending on brand. I take 0.4mg and it stops all RLS.

If your GP refuses to consider opioids, ask for a referral to Prof. Walker at Queen Sq, London. He does phone appointments.

[Simkin in reply to Joolsg]

Many thanks Joolsg. SO helpful.

[Simkin in reply to Joolsg]

Jools can I just ask do you just take those opoids now?I am wondering if I will have to withdraw (& the nightmare that goes with withdrawing) completely from gabapentin before (if my doctor agrees) taking low dose opioids.

[Joolsg in reply to Simkin]

No you can start opioids while still on gabapentin. You can then withdraw very slowly from gabapentin over several months. That way you won't experience any withdrawal symptoms.I withdrew from 150mg pregabalin by 6.25mg every 2 weeks. I cut the capsules & divided the powder. You can ask for 100mg gabapentin pills and drop 100mg every 2 weeks or every week. So you would reduce over 21 weeks or 42 weeks. Your GP will suggest a much faster withdrawal schedule but I would opt for 100mg a week/21weeks/ 4 months.

Buprenorphine caused severe nausea for me, but not everyone experiences that.

It also caused opioid induced panic attacks/anxiety but a small dose of pregabalin (25mg) stopped it.

Keep some gabapentin back in.case you get anxiety or 'alerting' as the gabapentin is sedating and will help. You would only need 100mg.

Hope your GP listens and looks at the Mayo algorithm and the Massachussetts Opioid study.

[Simkin in reply to Joolsg]

Gosh thank you. I will have to write this down so I am well equipped when I see my doctor!All so helpful.

[Joolsg in reply to Simkin]

Just remember that GPs aren't taught about RLS or the drugs that treat it. That's why it's important to read and learn everything for yourself.In other diseases, it is always best to listen to the experts but sadly, there aren't any RLS experts in the UK.

A good starting point is the Mayo clinic algorithm.

[Simkin]

Yes I have shown my GP the algorithm & sent him the Mayo about opioids.

[Joolsg in reply to Simkin]

I have zero RLS now. I wrote to my neurologist, Prof Chaudhuri for Buprenorphine. Initially, he refused. I sent him the opioid study and reports of success by other RLS patients. Eventually he emailed to say he had no objections but my GP had to agree to prescribe. Annoying because he knows most GPs will refuse!Luckily my young,female GP agreed to a trial. The results were instant and miraculous. Zero RLS on 0.4mg.

Prof. Chaudhuri was stunned.

He still refuses to prescribe it to his RLS patients as it is not 'licensed' for RLS. Nor is gabapentin or pregabalin but most GPs see the benefits and prescribe off licence.

My GP is now fully aware of how life changing and life saving Buprenorphine was for me and she and her colleagues at the surgery will now prescribe it for others with RLS.

We have to educate our doctors and they will see the results, learn how effective low dose opioids are for RLS, and prescribe for others.

I really hope your GP is open to updating his/her knowledge.

[Simkin in reply to Joolsg]

That is so interesting because I remember Professor Chaudhuri used to be/maybe still is the absolute guru of RLS & he was always the Consultant who was the one RLS sufferers were referred to.I always hoped to see him so I am most interested to hear his views on opioids.

[Joolsg in reply to Simkin]

That's what I thought, which is why I asked for a referral in 2016 after I had suffered severe augmentation on Ropinirole and joined this forum.The knowledgeable people on here helped me through withdrawal and onto Oxycontin and pregabalin. They directed me to Dr. Buchfuhrer's book and the research on iron infusions and the dangers of Ropinirole, Pramipexole and the Neupro patch.

When I saw Prof. Chaudhuri's team I was really, really shocked when they suggested the Neupro patch. I knew from this forum that it was another dopamine agonist and I would quickly suffer worsening of RLS again.

I no longer believe he and his team are the 'experts' they purport to be.

I know there are better neurologists out there who are aware of the benefits and safety of iron infusions and opioids so I recommend them instead.

Prof. Walker at Queen Sq is one of them.

[Bumble34 in reply to Joolsg]

The problem is that the so called experts here in the UK don`t really seem to understand the Condition that we all on this Forum suffer from, Professor Walker recently advised a poster that in his opinion Augmentation wasn`t a problem on up to 2mg of Ropinirole, would give me little confidence in seeking a consultation with him, other than perhaps the only route available to me to try an Opioid.

[Joolsg in reply to Bumble34]

I agree with you! Even the few neurologists in the UK who know more than the basics are totally unaware of the scale and extent of augmentation. Even 0.5mg of Ropinirole can cause severe augmentation. If they saw hundreds of patients a week, like the US top experts, they'd never prescribe another DA. Also, they'd insist patients withdrew from Ropinirole/Pramipexole/neupro patch immediately.I know someone under Prof. Chaudhuri who has been refused iron infusions because they cause severe anaphylaxis or death. That is totally incorrect and outdated advice. The new formulations are very safe and ferric carboxymaltose has a 1/250,000 risk of adverse effects.

It's crystal clear that UK neurologists are not up to date and RLS patients cannot trust their advice.

Very sad. But it means we have to do all our own research.

[Simkin]

Yes after pramipexole along came neupro patches.I have to say both of them gave me years of relief but no-one warned me (I don't think neurologists knew of the downside) of the hell I would go through trying to wean myself of both drugs when they stopped working.

Ropinerole did nothing for me.

Although I am 72 and have had RLS since O I was 34 I have only just recently discovered this forum.

I have been a member of the RLS Society for years, have been to all their AGMs and workshops etc etc.

I thought I was an expert on RLS but what I now realise is everything with these drugs is trial & error.

All my friends & even most doctors simply could not understand what I was going through.

It is such a relief to find I am not battling on alone & to talk to people who understand.

I get so annoyed with people who sleep 8 hours a night!! They are SO lucky.

I hate being up most of the night & feeling tired most of the day.

We are going on a longhaul flight in May to see our son in the USA & I am dreading the flight.

Most of my friends take sleeping tablets on long flights but of course they make rls worse.

[Joolsg in reply to Simkin]

Fingers crossed you may be on a low dose opioid by then.I wasted 5 years struggling on 25mg Oxycontin and 150mg pregabalin. Prof. Chaudhuri told me there were no other options and 4 hours disrupted sleep was the best I could expect.

He was wrong.

Iron infusions work well for many, especially if their RLS started due to anaemia. He refuses iron infusions so I sorted one myself at St George's. Sadly it didn't work for me, but it does for the majority.

He also didn't offer Buprenorphine but I pushed and pushed and eventually he said he would have 'no objections if my GP agreed to prescribe'.

Luckily my GP agreed and it was miraculous from the first night.

I take 0.4mg ( 0.2mg at 10 and 0.2mg at midnight) and sleep 8 hours. Zero RLS night or day. Several others have had similar results.

I really hope your GP considers a trial of low dose Buprenorphine for you.

[Simkin in reply to Joolsg]

Jools 8 hours sleep! WOW! What is that!?!?Sounds BLISS!!

I will let you know how I get on.

Simkin

[Joolsg in reply to Simkin]

Exactly. Shumbah told us about Buprenorphine a few years ago and how it had saved her life. I found the same. In the US, experts prescribe methadone and Buprenorphine for refractory RLS and they are highly effective. Methadone is almost impossible to get in the UK, but some neurologists are seeing the benefits and are prescribing Buprenorphine.

[Simkin in reply to Joolsg]

Here's hoping!!