With which medicine shall I start / RLS?

[Sausewind]

Hello i am new in the forum. I have RLS since I can think. In the last few month it gets worse. My neurologe gave me Pregabalin to take 25 mg to start 1 week and then double up. I have so fear of all the sideeffects and also the weightgain, because I am very sportive. When I read all the comments in the forum I am so unsure what I shall try. No dopaagonists that seems to be important. Or is it better to start directly with opids? My iron level is okay (97). Greetings from Switzerland.

[Joolsg]

Can you confirm the 97 is your serum ferritin level? If so, although it is above the recommended level on many sites, it is still below 100ųg, preferably 200ųg.So as long as your transferrin saturation percentage is below 48%, you can take iron supplements every other day.

Look at RLS-UK to confirm you do have RLS, under diagnosis.

Are you on any trigger meds?

Anti depressants, sedating anti histamines, statins, beta blockers and PPI meds can all trigger RLS.

Pregabalin is now first line medication, if raising serum ferritin above 100ųg and replacing trigger meds doesn't help.

The average dose is 150mg and it takes 3 weeks at that dose to be fully effective. Weight gain is a side effect, but try to watch your diet and it should be fine.

Most common side effects do settle within a few months.

If side effects become unbearable or it doesn't work, you can then discuss low dose opioids.

[Sausewind in reply to Joolsg]

Yes the iron 97 is correct, then I try first to take more iron. Yes I was diagnosed RLS. I don't take any medication except from bioidentical hormones. I read also about tadalafin. My husband has one. What if I just take one as a women, just to see if it work? Or is this bad for a womens body?

[Joolsg in reply to Sausewind]

Serum iron is different to serum ferritin. You need to find out your serum FERRITIN level.Tadalafil, I just looked up. It's a medication to treat male erectile dysfunction so you definitely should NOT take that.

HRT, bio identical hormones can trigger RLS for some women.

If you find the side effects of pregabalin are too awful, you don't just stop taking it. You should reduce it slowly.

[Sausewind in reply to Joolsg]

Thanks a lot, I have Ferritin 97

[ChrisColumbus]

UPDATE: I see that Joolsg posted while I was - slowly -writing this!

Welcome to the forum.

Your doctor's first step should have been to run a morning, fasting over night, full iron panel blood test - having stopped any iron supplementation 48 hours before the test, and you should have been given your serum ferritin and transferrin saturation (TSAT) numbers. If the '97' was ferritin it's not bad, but RLS sufferers benefit from higher levels. Your TSAT should also have been under 45%.

Your doctor should also have run through any other meds and supplements that you take advising on possible RLS triggers: if you reply listing anything you take one of us can check for you.

Diets high in sugar, artificial sweeteners in 'diet' foods and drinks, MSG, caffeine, alcohol etc can all trigger some (but not others, and caffeine helps some).

If medication is needed alpha2-delta ligands (gabapentin and pregabalin) should be tried first unless contraindicated. The following about starting pregabalin is extracted from the Mayo Algorithm:

"It is recommended to start treatment 1 to 2 hours before usual onset of symptoms. Treatment should commence at 75 mg of pregabalin daily (50 mg in patients older than 65 years) and be increased every few days as needed. Effective pregabalin doses are usually in the range of 150 to 450 mg per day."

Yes there are side effects, but most wear off - although gaining weight is one that can continue.

For information about opioids for RLS see this pinned post:

healthunlocked.com/rlsuk/po...

You are not alone - there is help here

[Sausewind in reply to ChrisColumbus]

Thanks very much. My weight is always the same since 30 years. If i remarke sudden gaining weight I can stop immediately Prega?

[ChrisColumbus in reply to Sausewind]

It is something to be aware of, but it can be controlled by focusing on appetite and portion size. And as SueJohnson says, you can always try switching to gabapentin: the advantage of pregabalin is that you don't have to split higher doses over 2-3/several doses every two hours as you do for gabapentin.

[SueJohnson in reply to Sausewind]

You don't want to stop immediately - you would need to wean off it.

[ChrisColumbus]

By the way, Hormone Replacement Therapy can trigger/exacerbate RLS.

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

Your bioidentical hormones makes RLS worse for most.

I agree with Joolsg that you should try to improve your ferritin as improving it to over 100 and preferably to over 200 helps 60% of people with RLS and in some cases completely eliminates their RLS.

Take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.

Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.

If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after.

Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron.

Don't be afraid of pregabalin. Yes sometimes but not always it can cause weight gain, mainly by increasing appetite. If it does you can always make a direct switch to gabapentin. Although they are basically the same drug except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. If it comes to that post back here because they are taken differently.

It will take 3 weeks before pregabalin is fully effective. After that increase it by 25 mg every couple of days until you find the dose that works for you.

Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours.

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 300 mg ."

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

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

Many 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.

Why would you want to take tadalafin? It is used to treat erectile dysfunction (ED, impotence; inability to get or keep an erection), and the symptoms of benign prostatic hyperplasia (BPH; an enlarged prostate) which include difficulty urinating (hesitation, dribbling, weak stream, and incomplete bladder emptying), painful urination, and urinary frequency and urgency in adult men. It won't help your RLS

[Sausewind in reply to SueJohnson]

Sue, just to be sure: If i take 70mg ironbisglycinat then there are 14mg of it elemantary iron...is this correct?

[Sausewind]

Uh thanks a lot O try first with the iron. I read a study that a man took tadalafin and the RLS went away

[Joolsg in reply to Sausewind]

journals.lww.com/clinicalne...

This is the study. One man.

I think you should be very wary of taking a medication for male erectile dysfunction. It hasn't been tested on women and it was an anecdotal report from one male.

[SueJohnson in reply to Joolsg]

It has been used for women but for other things so it won't hurt her.

[SueJohnson]

70 mg of iron bisglycinate contains 70 mg of elemental iron.

I saw the study but it was just 1 man. It hasn't been repeated and it hasn't been used on a woman. It probably won't hurt but it won't help except as a placebo.

[ChrisColumbus]

There is a Swiss RLS support group recognised by EARLS (the European association):

restless-legs.ch/

But while they acknowledge augmentation on dopamine agonists they seem to think it is fairly rare, which it is not.

They do recognise that gabapentin, pregabalin and opioids may be used instead - but overall you will get better and more up-to-date advice in *this* forum.

[Sausewind in reply to ChrisColumbus]

Yes I think so, the swiss are always a little bit later than other countries😀

[ChrisColumbus in reply to Sausewind]

Actually there is a lot of out-of-date treatment throughout the world: too many doctors are either too busy to keep up, or they don't trust research done in other countries. UK doctors very much included!

[RLSAndy]

Hey, on top of all the replies can i just add that the pregabalin should not directly make you gain weight but may effect your appetite which some then cant overcome and eat more leading to weight gain so if you are able to be aware of that you dont. Ive lost three stone and bodybuild during intense Ropinirole withdrawal from 4mg to .5.

[Birdland]

How long have you been taking hormone replacement? Did you notice your RLS getting worse when you started it? I had mild RLS until I started hormone replacement which made the RLS much worse.

[Sausewind in reply to Birdland]

Hmm so difficult to say, I take them since 13 years, and because I had always RLS I did not remarque an increase. But since 2022 I have a strange Tinnitus and my hormone level have dropped by half. Since a few weeks the Tinnitus is better, and could be of taking more hormones.... I will never know, Could be that the RLS is worse because of this. Hmm so I can choose; more RLS or louder Tinnitus. And both is not sure if its triggered by the hormones. But in younger years the hormones were also higher and the RLS was not so bad.. hmmmm

[HipHop1972]

Hello Sausewind, welcome to the Forum where you will find lots of information from very knowledgeable people. I had RLS for over 40 years and was prescribed Nupro parches and then Ropinirole both were Dopamine Agonists and are now known to cause a worsening of RLS (augmentation) I was taking them for many years and my symptoms just got worse and worse, RLS-UK told me I needed to come offf them but very slowly. It took me 13 months so I would suggest that you stay away from anything with Dopamine. It has taken a long time but I’m now RLS free and sleeping very well. My Neurologist prescribed Pregabalin but the side effects were to severe, for me but not everyone suffers from extreme side effects as I did. I was then prescribed Buprenorphine 5 microgram patches, they last for 7 days so are very convenient, as they didn’t work 100% my Neurologist increased to 10 microgram, I’m sleeping through the night zero RLS and no side effects apart from a bit of constipation which is easy to deal with. I hope this helps but I don’t know what it’s like in Switzerland in being prescribed Opioids, not easy in the UK.

I wish you well and hope you find relief and rest soon HipHop1972

[Sausewind in reply to HipHop1972]

Oh thanks very much. How many mg did you take from Pregabalin?

[HipHop1972 in reply to Sausewind]

Hello again Sausewind, I started on a very low dose, 50 mg and increased to 200, you can take up to 300mg but unfortunately when I reached 200mg I got blurred vision, swollen legs and ankles and kidney function was not good, but as I said not everyone reacts as badly as I did. Lots of people on the forum are taking Pregabalin or Gabapentin and find they work extremely well so don’t be put off by my experience.

Best wishes HipHop1972

[Oregonmike]

you may not want to hear what I think- but I’m not a fan of Pregablin or Gabapentin period. If you drink alcohol stop. If you consume a lot of sugar cut back. If you start on opioids know that your body will get used to them and you’ll gradually need more and more. And withdrawal or around here they say augmentation- is hell.

Good luck

[SueJohnson in reply to Oregonmike]

No you don't always need more and more on the opioids. The massachusetts opioid-register has shown that.

[SueJohnson in reply to Oregonmike]

"at the 2 year mark of the 40.6% of participants that increased dose, over half increased by a small amount." massgeneral.org/assets/mgh/...

[Oregonmike]

good to know