Maxed out on Pregabalin

[chihuahualuver]

Hello. I have been increasing my Pregabalin now for several months. I now am taking 600 mg and my RLS continues to wake me up every night between midnight and 0100. My Dr says 600 mg is the maximum dose. I have tried many different meds without any luck. They either don’t work or I develop augmentation. Very frustrating. Any suggestions are most welcome. Thank you in advance!

[SueJohnson]

You need a low dose opioid like buprenorphine. If you don't want to go that route you could try dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a... movementdisorders.onlinelib...

Have you had your ferritin checked? If so, what was it? 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 multivitamins that have iron in them 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.

Do you feel the pregabalin is helping you at all? If not. you need tp come off it by reducing by 25 mg every two weeks to avoid withdrawal effects. If you do so slowly you won't have any..

[chihuahualuver in reply to SueJohnson]

Thank you everyone for all of the great advice! I have an appointment with my doctor at the Mayo Clinic in early January. I have been seeing the same doctor for quite a few years and we have tried many meds. I also am scheduled for an iron blood panel at that time. An added problem is that I have RBD as well. The RBD meds often work against me with the RLS drugs. I will speak to my doctor about some of the ideas here. Thank you all once again!

[SueJohnson in reply to chihuahualuver]

What are you taking for the RBD?

[chihuahualuver in reply to SueJohnson]

I take melatonin. It’s the only thing that has worked for me. It can interfere with the RLS, but I can’t be punching and kicking all night either. It can be quite a dilemma.

[SueJohnson in reply to chihuahualuver]

Have you tried clonazepam? In looking up RBD, that s is what is recommended although I see melatonin too.

[chihuahualuver in reply to SueJohnson]

Yes, I have. That was the first drug I tried for RBD. It was a few years ago. I don’t remember what the issue was, but it conflict cited with another of my (many) meds.

[BettyRae]

Have you tried Horizant?

[SueJohnson in reply to BettyRae]

If pregabalin doesn't help Horizant won't because it is basically the same medicine but formulated so it lasts 24 hours.

[BettyRae in reply to SueJohnson]

I looked up what you said. You’re right that they are the same class of drug, but they work differently. In what I read, the positive results were quite a bit higher for Horizant than pregabalin. It way be worth a try. I’ve had RLS since my teens. I’m now 79. I’m taking 600 mg Horizant, 75 mg pregabalin and 1mg Ropinirole and doing ok at this point. I found when taking 150 pregabalin and no Horizant, I had worse symptoms during the daytime. Yes, I have side effects, but anything is better than RLS!

Horizant should, I hope, see you through the night.

[SueJohnson in reply to BettyRae]

He can't get Horizant because he lives in the UK.

[Dotmowatee in reply to SueJohnson]

I have had no problem getting horizant in Plymouth, UK.

[Joolsg in reply to Dotmowatee]

I'm curious, my pharmacist told me gabapentin enacarbil ( horizant) was not available in the UK in 2018.When did you start taking it? Maybe it is now available here, but as it's more expensive than gabapentin, certain health areas won't allow it.

[Dotmowatee in reply to Joolsg]

It was a few years ago that I was prescribed Horizant, they didn't agree with me. I assumed they were still available. I am now on Targinact with no problems.

[Joolsg in reply to Dotmowatee]

Good to hear. Gabapentin didn't agree with me, so I asked to switch to horizant in 2018. My pharmacist said it wasn't available in S. London.

[SueJohnson in reply to Joolsg]

In March I found it at unitedpharmacies-uk.md/Regn... £160.74 & Elsie77 found 3 other pharmacies that carried it.

[Joolsg in reply to SueJohnson]

I suspect it's the usual UK NHS postcode lottery. Different health areas have a different list of drugs that are allowed to be prescribed. It's ridiculous. In Scotland, cannabis and various MS drugs are available free of charge that are not available in England.

Even in London, different boroughs allow different drugs. Sativex, a cannabis based MS drug is available free on the NHS 2 miles away, but my borough will not allow it. We all pay the same high taxes to fund the NHS, but we all get different treatment and different drugs.

Buprenorphine is available in my London borough, but is red listed in another London borough. It makes no sense at all.

We shouldn't complain too much though, because it is pretty good on the whole.

[Munroist in reply to SueJohnson]

Hi Sue. Not sure if I’ve missed something but chihuahualuver’s profile says he’s in the USA.

[SueJohnson in reply to Munroist]

Duhh. I guess I was thinking of someone else.

[SueJohnson in reply to BettyRae]

Horizant is expensive. Are you using their discount program?

[BettyRae in reply to SueJohnson]

No, is there a discount program? Yes, it’s very expensive! I just close my eye and give the pharmacist my credit card.

I was interested that you mentioned Night Walkers. My neurologist didn’t seem very interested in RLS, but of course prescribed meds. Every time I saw her I’d bring her the latest copy of Night Walkers. What a difference in her attitude! Now she so concerned about me and so sympathetic!

[SueJohnson in reply to BettyRae]

It is great that you have a doctor willing to learn. Horizant has a prescription savings card where you pay as little as $55 a month for 30 tablets (may be slightly different as I haven't checked recently) for eligible patients. If not eligible I have another source where you pay a similar amount. Https://horizant.com/savings

[BettyRae in reply to SueJohnson]

Thanks so much for the information.

[Moretravel1]

Change doctors. Listen to Sue and find a doctor that knows something about RLS and how to treat you. You don’t have to suffer like you have been.

[SueJohnson in reply to Moretravel1]

He doesn't need to change doctors at this point which is hard in the UK. His doctor was knowledgeable enough to put him on pregabalin and knows the maximum amount.

[Moretravel1 in reply to SueJohnson]

Sorry Sue. Won’t do that again.

[SueJohnson in reply to Moretravel1]

No reason to be sorry.

[Hidden]

That's a crazy high dose of pregabalin. Just take care coming off it should you decide to do so. You might do better combining two meds as opposed to just taking one. I see from a previous post you took pregabalin with Tramadol. I'm assuming that stopped working for you? Perhaps you could list what you've already tried as a starting point?

[Simkin]

I tried every med and nothing worked but am thus far having great success on a low dose buprenorphine. Let us know how you get on in January.

[Baz33]

This is interesting, my gp prescribed 50 mg ,I'm.on 200mg just to turn the volume down ,I wondered what was the max dose ,thankyou .Goodwick x

[Hidden in reply to Baz33]

450mg is the maximum dose of pregabalin for RLS. Personally, I wouldn't go that high as the side effects tend to increase the higher the dose. And side effects can increase/ crop up over time.

[Baz33 in reply to Hidden]

What are the side effects please , I'm just grateful to be feeling well since coming off the gabapentin, brilliant for my legs but awful depression.

[SueJohnson in reply to Baz33]

There are too many to list although obviously one doesn't get them all. They can increase the higher you go but not for everyone. Some people never have any. However side effects do not increase over time nor crop up at any time.

[Hidden in reply to SueJohnson]

I don't know why you’re weighing in Sue when you have no experience of pregabalin yourself.

I have taken pregabalin for approx. 9 years. Over the past 5 years, and particularly the past year I have developed new symptoms which I have seen multiple specialists and General Practitioners about. They all believe that pregabalin is the cause. They also say that with medications, new side effects can crop up overnight, even after having taken a medication for years. Also, hormonal changes (eg perimenopause) can impact liver function which plays a critical role in metabolising drugs. As a result, the speed at which medications are processed and eliminated form the body can be altered. This can lead to changes in drug efficacy, dosage requirements and potential side effects.

I’m on several forums dedicated specifically to pregabalin. Many individuals report similar experiences to me (i.e. experiencing new side effects almost overnight). These side effects abate when the pregabalin is ceased or reduced.

[SueJohnson in reply to Hidden]

I do have experience. I have taken pregabalin and I still switch over to pregabalin when it is inconvenient to take gabapentin. I take 1500 mg. Both gabapentin and pregabalin are similar in side effects. I certainly agree that hormonal changes can affect things. However I will bow to your experience. Although I still feel it is not common. People who are on forums generally are on them because they have problems or have had problems and want to help others. For example this forum.

[Hidden in reply to Baz33]

Like many medications, pregabalin comes with side effects. Some of the more common ones are brain fog / reduced cognitive functioning; depression / flattening of emotions; reduced motivation; balance issues; vertigo; blurred vision. I’ve experienced (increasingly) all of the above with the exception of depression. Hopefully you have some good support around you that can help you monitor your depression should you decide to stay on it.

[Baz33 in reply to Hidden]

All go so far,I'm.hoping this stays as such, I have my blood tests tomorrow to see if the infusion has raised my levels. The above were symptoms I experienced on gabapentin, I do appear to be experiencing symptoms in my arms .I'm 53 my menstrual cycle is still the same so I'm not sure where I am in terms of perimenopauae ,but I'm logging symptoms alongside my cycle .thankyou for your feedback

[Polesden11]

Hi. I take 5mL oromorph and 4 paracetamol but very rarely. Only thing that really helps is walking and I'm now bedridden 24/7;Hope you get more helpful feedback from others

Sue x

[Baz33 in reply to Polesden11]

Hello, sending you lots of strength and health x

[SueJohnson in reply to Polesden11]

That is a very low dose. In fact it is below the starting dose which is 10 to 15 mg. The usual effective dose according to the Mayo Clinic Updated Algorithm on RLS is 15 to 45 mg.

Why are you bedridden?

[Polesden11 in reply to SueJohnson]

I have MSA x

[SueJohnson in reply to Polesden11]

Oh I am so sorry and to have RLS on top of it. I would definitely see if you can get your oramorph dose increased. Also it wears off in about 4 to 6 hours so you can get mini withdrawals if you don't take it again or ask for buprenorphine which lasts 24 hours.

[SueJohnson in reply to Polesden11]

Have you had your ferritin checked? If so, what was it? 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 multivitamins that have iron in them 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.

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night and stress.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, and don't know if you can do this but 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, listening to music and meditation . 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.