Finasteride: Has anyone on this forum... - Restless Legs Syn...

Restless Legs Syndrome

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Finasteride

nocturne profile image
18 Replies

Has anyone on this forum taken Finasteride? I've been on it for a couple of months for my hair loss (I'm female). I've developed hives over the last few weeks, which I'm beginning to think is due to the Finasteride. The hives aren't too bad yet, and have been mostly controlled by a steroid cream. But I do occasionally have to take fexofenadine (commonly sold in the U.S. as Allegra), which to my knowledge, doesn't aggravate RLS the way Benadryl does. But meanwhile, my RLS has gotten worse, and I'm trying to figure out if it's related to Finasteride, or if it's just coincidental. I would appreciate any input. Thanks! (For my RLS, I take one or two codeine-acetaminophone #3 at night.)

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nocturne
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SueJohnson profile image
SueJohnson

Hives is a known possible side effect of Finasteride.

nocturne profile image
nocturne in reply to SueJohnson

Hi Sue,

Thanks for your reply. I know about the hives (haha, I got 'em!), but my question was about its effects on RLS. Thanks for responding, though!

SueJohnson profile image
SueJohnson in reply to nocturne

Sorry - sometimes in a hurry to answer something or when I'm tired I miss things. See my reply to userotc below. Have you changed anything else recently including food, lifestyle changes like exercise, supplements?

nocturne profile image
nocturne in reply to SueJohnson

No.

userotc profile image
userotc

RLS has been reported with finasteride (link below). Like many/most drugs, finasteride has many serious side effects. Unlike some, it can cause them even after coming off it so wean off slowly and keep fingers crossed! hairlosstalk.com/interact/t...

SueJohnson profile image
SueJohnson in reply to userotc

I looked at the link. Only one person had RLS - the others only had muscle twitching which is not RLS and she got it when she changed to a different brand of finasteride and it went away when went back to her original brand but admitted she also changed back to a multivitamin so it is possible it was not taking the multivitamin that made her RLS worse. I haven't found anything in my research that says it makes RLS worse. That said we are all different and may react differently to a medicine.

userotc profile image
userotc in reply to SueJohnson

I'm not sure if RLS has been clearly separated from other muscle-related, serious fin side effects. See below another link re the latter. From personal experience, I know that other symptoms associated with fin can make the muscle ones seem relatively insignificant!

But the main purpose of my reply was to warn the poster about the potential of ongoing, serious problems even after drug withdrawal. Not something widely recognised by medics but sadly nothing new there!

canada.ca/en/health-canada/...

SueJohnson profile image
SueJohnson in reply to userotc

Muscle twitching can certainly occur with RLS. But I understand your purpose to warn about serious problems.

nocturne profile image
nocturne in reply to userotc

Thanks, userotc. It sounds as though it's only prescribed for men in Canada, so I'm not sure if these side effects would apply to me. (Lol, glad I don't have to worry about enlarged prostate!) But I will ask my dermatologist about the other issues when I see her. Thanks again.

userotc profile image
userotc in reply to nocturne

Sorry I thought you were already on finasteride from your post.

nocturne profile image
nocturne in reply to userotc

I am. I've been on it for a couple of months. It's prescribed off-label for female-pattern baldness in the U.S. But from what I've read, it takes about a year for it to show results. If my hives and increased RLS are caused by finasteride, I think I'm ready to throw in the towel and opt for a wig. : p

userotc profile image
userotc in reply to nocturne

That's what I thought so don't understand why you think you're immune to side effects?. And it is/was openly prescribed globally.Tbh I've not read about females having fin sides (before or after stopping) but presume that's because of the low relative numbers. I don't believe the 1-1.5% rates often quoted as that's likely from the delivering pharma companies and/or others with vested interests. But obviously the fewer recipients eg females, the fewer the effects.

userotc profile image
userotc in reply to SueJohnson

Sue, your response has prompted a question! I'm on the RLS section because my mum was "diagnosed" with it by her GP a couple of weeks ago. But no definitive investigation/test done, just a usual GP response in a 5min consultation.

So my question is: do you agree there's no definitive RLS test, as per link below ?nhs.uk/conditions/restless-....

Mum didn't even receive the full assessment in that link, other than limited symptom Q&A!

PS Amitriptyline given but returned unopened after noting PIL, online (before joining you!)

SueJohnson profile image
SueJohnson in reply to userotc

The only way to diagnosis is whether it meets the following:

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.

This is the advice I give to new patients:

Has she had her ferritin checked? If so what was it? If not this is the first thing that should be done for RLS. When she sees her doctor, she should ask for a full iron panel. She should stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. She should have her test in the morning before 9 am if possible. When she gets the results, she should ask for her ferritin and transferrin saturation (TSAT) numbers. She wants her 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 her transferrin saturation to be between 20% and 45%. If her ferritin is less than 100 or her transferrin saturation is not between 20% and 45% post back here and we can give you some advice.

Above all she shouldn't let her doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex) or the Neupro patch (Rotigotine) unless there is some special reason s/he feels she needs it. They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.

Instead she should ask him/her to prescribe gabapentin or pregabalin. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). [If she is over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin).] It will take 3 weeks to be fully effective. After that she should increase it by 100 mg (25 mg pregabalin)every couple of days until she finds the dose that works for her. She should take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If she needs more than 600 mg, she should take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If she needs more than 1200 mg, she should take the extra 6 hours before bedtime. (She doesn't need to divide the doses on 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 she takes magnesium she shouldn't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and she shouldn't take calcium nor calcium-rich foods within 2 hours for the same reason (not sure about pregabalin).

Have her check out the Mayo Clinic Updated Algorithm on RLS which will tell her everything she wants to know including about its treatment and refer her doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it (including the NHS article) at Https://mayoclinicproceedings.org/a... This is now the bible for RLS.

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, 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, fennell, low oxalate diet, a low-inflammatory 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, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If she is taking any I may be able to provide a safe alternative.

userotc profile image
userotc in reply to SueJohnson

That's what I thought - basically the investigation is all symptom-related. With little/no consideration of other factors in my NHS link. We were hoping for a scan.

We're currently handling it naturally eg increasing iron/ferritin, which has fluctuated recently and could/should increase.

SueJohnson profile image
SueJohnson in reply to userotc

On the iron. If she takes blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so she should check with her doctor. Otherwise, she should 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 ( or any iron that has at least that amount of elemental iron) with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if she has problems with constipation, iron bisglycinate is better. Also she should take Lactobacillus plantarum 299v as it also helps its absorption.

She should take it every other day as more is absorbed that way, 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 she takes magnesium (or magnesium rich foods), calcium (or calcium rich foods) or zinc, even in a multivitamin she should 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.

She shouldn't take her iron tablets before or after exercise since inflammation peaks after a workout. She shouldn't take tumeric as it can interfere with the absorption of iron. If she takes thyroid medicine she shouldn't take it within 4 hours. It takes several months for the iron tablets to slowly raise one's ferritin. She should ask for a new blood test after 3 months.

If her ferritin is below 50 she should double the amount of iron.

userotc profile image
userotc in reply to SueJohnson

Thanks. Mum (aged 69) doesn't take any drugs despite being CKD stage 3.

We are following a separate Nutritional Therapy protocol to her CKD one which includes some things you've suggested but starts with diet. The supplements follow as/when required.

Her ferritin has been between 68 and 93 recently but we're aiming for a stable >100.

nocturne profile image
nocturne

Thank you so much for this link. It seems that the jury is still out on its effects on RLS, but I read this discussion with interest. Thank you for taking the trouble to post it for me!

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