Pregablin

[Baz33]

Morning, I'm off my CITALOPRAM and iron infusion raised ferritin to 178.Legs still horrific without pregabalin which is great but at 200mg I'm in a coma for almost 14 hours so working feeling drugged and impacted, I'm only allowed to stay on this for 3 months then they'll ween me off ....but to what ???

[ChrisColumbus]

I was going to suggest that you looked at gabapentin, but see that you were on that before pregabalin....

I haven't read through all your previous Posts/Replies, have you considered low dose opioids: "where first line treatments have failed due to adverse effects or augmentation, low dose opioids are highly effective and do not generally lead to addiction or tolerance if patients are adequately screened and monitored."

Depending on where you are, you may have difficulty in getting a doctor to prescribe low dose opioids. This may be helpful:

healthunlocked.com/rlsuk/po...

[Baz33 in reply to ChrisColumbus]

Thankyou for your response.I tried codeine but it didn't touch the sides ,I absolutely can't stay on this tho I'm.sleeping if I'm not working .

[ChrisColumbus in reply to Baz33]

Thanks Baz: I hope that Joolsg SueJohnson or Madlegs1 will jump in with more advice

[SueJohnson in reply to Baz33]

Codeine is a very weak opioid. I would suggest buprenorphine which lasts 24 hours. Most of the others only last 4 to 6 hours and if you don't take them that often result in mini withdrawals. If you need to convince your doctor see the pinned post "Opioids for RLS" which was provided by ChrisColumbus at the top right.

[SueJohnson]

If your doctor absolutely refuses to prescribe opioids another one to try is 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...

[Baz33 in reply to SueJohnson]

Thankyou sue .The pregabalin was only short-term for 3 months ,yet seems to be effective but very ,very heavy ,I took it at 7pm last night and am only feeling level now , 25 hours later so I don't really want this to continue .

I'll take this info to my.gp.

Best wishes for 2024 and appreciation for all you do to help us on this forum .

[Ocelot85 in reply to Baz33]

Why only 3 months? I’ve been on it for 8 years! The grogginess eventually wears off. I have to come off it now though 🥲

[Baz33 in reply to Ocelot85]

He said it was highly addictive and I couldn't stay on it ??? I'm UK they're pretty useless here, they've lowered it yo 150 mg now so fingers crossed....its very effective but I need to work !!!!

[Ocelot85 in reply to Baz33]

It’s not addictive at all. I’m on 400mg and could come off it tomorrow if I had too. The only thing I’m addicted too is the sleep it gives me 😂

GP’s don’t know much about RLS so it is generally advisable to see a neurologist as they know what they are doing. I have a letter from consultant saying I can use Opioids among other things so I don’t get arguments from the GP. It allows me to dictate how I treat it. I may not be a doctor but I feel I know more about RLS than most GP’s.

[SueJohnson in reply to Ocelot85]

Why do you have to come off it?

[Baz33 in reply to SueJohnson]

The gp said it was addictive so after 3 months they would retest my iron levels then ween me off it, I questioned this as its not a course of anti biotics ...it seemed pointless putting me on it in the 1st instance ???

[SueJohnson in reply to Baz33]

Actually I was replying to Ocelot85.

[Ocelot85 in reply to SueJohnson]

No longer works and the max for RLS is 450 I am told. Plus I’d like to try something else so will be moving onto Clonazepam.

[SueJohnson in reply to Ocelot85]

Some articles do say that the max is 450, but actually the max is 600 mg.

To come off the pregabalin you need to do so very slowly to avoid withdrawal effects. Reduce by 25 mg every 2 weeks.

"The efficiency of clonazepam has not been established and it should not be used to treat RLS symptoms" according to NightWalkers Fall 2021 which is the magazine of the RLS Foundation. And since its half life is 40 hours it can lead to daytime sleepiness plus it is highly addictive. Some people do find it helps but if 450 mg of pregabalin which is a much stronger medicine for RLS did not help, it is unlikely to help you. You can always try it of course.

Did you ever take a dopamine agonist (DA) like ropinirole or pramipexole? That is what sometimes makes pregabalin not work. If not it is surprising it hasn't worked.

If not are you sure you have RLS? You don't give any history on your profile. All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.

If so, then you might be taking a medicine or supplement that makes 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.

And if you have RLS, aren't taking any medicines nor supplements, never took any DAs and you find that the clonazepam doesn't work, then you need a low dose opioid and I would suggest buprenorphrine.

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.

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

[Ocelot85 in reply to SueJohnson]

Oh Pregabalin does work for me it’s simply a tolerance issue, if has given me 8yrs of peace but I am now at 400mg, 300 had bedtime and 100 at lunch. I also take Magnesium which helps in addition but is not a cure.

I believe my consultant checked my Iron as well as all other underlying conditions and it was confirmed that I have primary RLS.

I have never used a DA and never will, to many horror stories…..also my consultant said they are moving away from DAs as a treatment for RLS due to augmentation.

Only issue with Pregabalin is ED and libido but there are ways around that….so I could just increase it and stay with it for another year or two. The only withdrawal symptoms I get is insomnia. I went down from 350 to 50 in a month with no issues at all.

Does anyone find that there RLS disappears for a year here and there? It makes me feel there is a non pharmacological solution but I’ve not found it if there is one.

[SueJohnson in reply to Ocelot85]

Two things that could help without increasing your dose. Unless you have symptoms during the day, there is no reason to take pregabalin at lunch so you could take it all at night. Second, you can try not taking your magnesium within 3 hours of taking pregabalin. Although that normally applies to gabapentin, you could try it,

There is no way to test for RLS except by the criteria I gave.

The blood tests normally given test for iron, but not for ferritin. Even if it was tested, doctors will say it is fine, but what is normal for others is not normal for those of us with RLS. Ask your doctor if ferritin was tested and if so what it was and what your transferrin percentage (TSAT) was and post them back here. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If they were not tested 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.

Generally the only people that have their RLS disappear for some time without any intervention are women who get it during pregnancy and then it disappears afterwards.

[Baz33 in reply to SueJohnson]

Hi sue , so in.my case ferritin now 178 saturation level 45 , no longer taking citalopram (trigger) ...am I right in thinking I'm medicated for life ?

[SueJohnson in reply to Baz33]

Not sure what you mean "medicated for life" ?

[Munroist]

I tend to agree with Ocelot85. I was on pregabalin for a year and didn’t find it addictive at all. It did make me feel slightly dull like I’d had a couple of drinks but I was able to function pretty normally at 300mg a day, taken in two 150mg doses at 8am and 8pm. It didn’t seem to help my RLS though.

[Baz33 in reply to Munroist]

I couldn't drive if I took 100mg ,I'd be a liability

[Munroist in reply to Baz33]

I have to admit it did slightly alter my perception of danger and safe driving, with a tendency to take slightly more risk. However I noticed that and tried to overcompensate with caution.

[Baz33 in reply to Munroist]

It's great for mine but not at 100mg and too much at 200mg ....so trying 150mg ...fingers crossed .