new member

[Jen366]

antihistamine is supposed to agrivate RLS right ??

thanks

Co codamol is the only thing that helps me sleep,

I’m trying essential oil on my legs , mix peppermint, lavender, and magnesium oil in some water , seems to help .

Jenny

[Madlegs1]

Generally it is the drowsy making antihistamines that cause trouble.

I take Cetrizine without any I'll effects.

Check the related posts on this page for more ok ones.

[ChrisColumbus]

Welcome to the RLS UK forum.

Sedating antihistamines - ones that help you sleep - are generally bad for RLS, but non-sedating ones like cetirizine and loratadine are OK.

There are lots of over-the-counter and prescription medications that trigger or exacerbate RLS. For a list see the 'Medications to Avoid' section that forms the bottom half of this linked page (the top half of the page covers recommended medical treatments):

rls-uk.org/medical-treatments

[ChrisColumbus]

For more information about RLS, non-medical treatments etc read through all the other information on the RLS UK website:

rls-uk.org/

[SueJohnson]

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

Allegra is also OK.

Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS. When you see your doctor ask 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. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.

Apparently the Co-codamol is not enough so you may need some medicine to completely take away your symptoms. Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex) unless there is some special reason s/he feels you need it. They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. 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 to 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 split the doses with 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 pregabalin)." If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). 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...

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 as you have found out, 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.

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.

[Jen366 in reply to SueJohnson]

Hello thank you for all that information, I have had my bloods done and I’m extremely anemic, I have prescribed iron tabs been on them 5 days .

I have been prescribed pramapexole and I’ve had it upped from one tab to two at night .

It seems to work some night more than others why is it so bad , and what is the other drug you mentioned to take in its place ?

Jenny x

[SueJohnson in reply to Jen366]

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 won't work. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.

And if your ferritin is below 100, which yours undoubtedly is one is more likely to suffer from augmentation per the RLS foundation publication on augmentation.

You say it works some nights and not others and you have had to increase it. That sounds like you are already starting to augment on it. I strongly advise you to come off it. Hopefully you have not been on it very long so it will be easier. To come off pramipexole, reduce by .half of a .088 tablet 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 to increase the Co-codamol 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.

Dopamine agonists like pramipexole used to be the first line treatment for RLS which is why so many doctors prescribe them but no longer are because of the danger of augmentation. Gabapentin and pregabalin are now the first line treatment. Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After that increase it as I described above.

Do ask what your ferritin is and report back here what it is . You probably will need an iron infusion to quickly bring it up and that will also help with your augmentation.

You say you have been prescribed iron tablets. They probably are Ferrous Sulfate 200 mg. If not let me know what they are. Take it once a day (not twice) with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every day at the same time so it is at least 24 hours apart since when you take it hepcidin is released which prevents iron from being absorbed for up to 24 hours, 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 or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin.

Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets. 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.

[Jen366 in reply to SueJohnson]

You’re amazing , thank you so so much for the time you’ve taken to answer me with all of this important information.

I’ve printed it off and I’m taking it to my doctor, I’m due another blood test in a week.

I’ve been on the meds since July this year and have increased to 2 in last few months .

Thank you x

[Joolsg in reply to Jen366]

I agree 100% with SueJohnson. Pramipexole should NOT be given.as a first treatment. It WILL cause severe worsening of RLS and withdrawal is brutal. Raising serum ferritin above 100, preferably 200 by pills/ infusions is now first line treatment.

[ChrisColumbus]

Magnesium helps some (including me, although I find that tablets work for me, not oil). But iron supplementation is commonly most helpful to RLS sufferers. Have you had a fasting full iron panel blood test including serum ferritin and transferrin saturation?

[Jen366 in reply to ChrisColumbus]

Hello , not yet I have another blood test in a week or so I’ll ask about this test .

Thank you 🙏