Antihistamines: Hi. I've been using... - Restless Legs Syn...

Restless Legs Syndrome

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Antihistamines

scifire profile image
18 Replies

Hi. I've been using Nasacort to relieve allergies for a year or so. It seems to be getting less effective. What other antihistamines can RLS sufferers use safely.? Also what statins are O.K.to use? Great group. Lots of information. Thanks. Jim

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scifire profile image
scifire
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18 Replies
SueJohnson profile image
SueJohnson

allega, zyrtec and claritin. A prescription one is clarinex.

charlie1234567890 profile image
charlie1234567890 in reply toSueJohnson

How is vistaril with RLS? Having trouble falling asleep and doctor recommended vistaril.

SueJohnson profile image
SueJohnson in reply tocharlie1234567890

It is a sedating antihistamine that makes RLS worse for most. I would recommend Zolpidem (Ambien) and Lunesta. Zolpidem is advised only for short term or intermittent use but Lunesta is not. Always discuss these with your doctor.

scifire profile image
scifire

Thanks Sue I was wondering about Nasal spray antihistamines.

SueJohnson profile image
SueJohnson in reply toscifire

Flonase is fine.

SueJohnson profile image
SueJohnson

None of the statins are safe for RLS. Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS although the FDA does show it increases RLS for some people and then there is Triglide which seems safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.

ChrisColumbus profile image
ChrisColumbus

I agree with Sue that no statins are totally RLS safe for all RLS sufferers, although not all RLS sufferers are susceptible to all - or indeed any - statins. I found rosuvastatin less bad than atorvastatin, but it still set off my RLS - just didn't make me feel quite so awful.

ChrisColumbus profile image
ChrisColumbus

You cannot just come off prescribed statins without a serious conversation with your doctor. And there is no guarantee that alternatives won't also exacerbate RLS or bring other side effects.

As Sue says, my consultant and doctor agreed that I could come off and go on ezetimibe (brand names Ezetrol, Zetia) instead. Ezetimibe inhibits the intestinal absorption of cholesterol and is recommended in the UK if a statin is “inappropriate or not tolerated”. It generally works more slowly than a statin, so may not be suitable for those with very high LDL. While there have also been reports that ezetimibe exacerbates RLS it didn’t for me.

Other alternatives to statins include bempedoic acid which works by reducing the production of cholesterol in the liver; Nustendi (Nexlizet in the US) which combines ezetimibe with bempedoic acid; fenofibrate (Lipantil,Supralip; Triglide in the US). Again, these may or may not trigger RLS or have other side effects.

I have in fact, with the agreement of my doctor, also come off ezetimibe - because I had bowel issues due to post radiotherapy proctitis. My cholesterol is down from when I had a mini-stroke, and my doctor is happy enough if I'm careful with diet and keep exercising.

However, some will need to stay on statins or alternatives despite RLS issues.

Kaarina profile image
KaarinaAdministrator

This is something you should discuss with your your doctor or consultant. Members on this forum are not qualified to give you medical advice on this.

healthunlocked.com/rlsuk/po...

scifire profile image
scifire in reply toKaarina

That's true but at least gives me a information I can have to discuss it with my doctor. Question: Why are you posting this ? If you read the posts on this forum there is tons of medican information being passed back and forth. If we stopped doing this you might as well close down the forum. Just wondering why my question was different.

Kaarina profile image
KaarinaAdministrator in reply toscifire

I spend many hours a day reading through threads on this forum. I am pleased to hear that you are benefitting from joining this community and are obtaining information in order to discuss matters further with your doctor.

ChrisColumbus profile image
ChrisColumbus in reply toKaarina

In my post I referenced talking to a/my doctor or consultant four times, and ended "some will need to stay on statins or alternatives despite RLS issues". I began by saying that "You cannot just come off prescribed statins without a serious conversation with your doctor".

A large part of the medical profession will prescribe statins (only) for either active control of cholesterol or even as a precautionary measure. Many of them take the view that the benefits of statins outweigh the side effects no matter how severe those side effects are.

However, the NHS/NICE recognises that not everyone can tolerate statins:

"You may also be prescribed ezetimibe *if you cannot take cholesterol-lowering medicines called statins, or if a statin medicine does not work for you*."

nhs.uk/medicines/ezetimibe/...

"Bempedoic acid...(used)... in patients who have not responded adequately to other appropriate measures [in combination with a statin, or with a statin and other lipid-lowering therapies, or with other lipid-lowering therapies *or alone if a statin contra-indicated or not tolerated*"

bnf.nice.org.uk/drugs/bempe...

"Nustendi...(used)... in patients who have not responded adequately to other appropriate measures [in combination with a statin, *or alone if a statin is contra-indicated or not tolerated*]

bnf.nice.org.uk/drugs/bempe...

Of course forum members need to talk to their doctors before they come off a prescribed medicine and before they can get a prescription for an alternative. But to do so they must have some knowledge that it is recognised that not everyone can tolerate or benefit from statins and that there ARE alternatives.

Without this knowledge they may not be able to have an informed discussion with the doctor, and may be fobbed off with "you must be on statins for the rest if your life". Just as they may be fobbed off with "dopamine agonists are the treatment for RLS, no you can't have an iron infusion that's only for chronic anaemia, no you can't have a low dose opioid because opioids are addictive...." etc.

Kaarina profile image
KaarinaAdministrator in reply toChrisColumbus

Your previous posting was excellently written.

SueJohnson profile image
SueJohnson in reply toKaarina

Was mine OK? I did say to discuss with your doctor

Kaarina profile image
KaarinaAdministrator in reply toSueJohnson

Yes, thank you.

DicCarlson profile image
DicCarlson

Cardiac health is a big concern for many people and cholesterol control seems to be job one. I tried a bunch of statins - all with side effects, mostly exercise intolerance and muscle pain. There are many natural supplements and diet changes that can help. I'm due for a re-check soon and will fill you in. My changes: quit alcohol 8 months ago, mostly plant based diet, supplements - berberine, nattokinase (an enzyme), pantenthine, citrus bergamot w/artichoke extract, amla (Indian gooseberry) and blueberry tea. The first line treatment for cardiac health is diet and lifestyle interventions. I am somewhat miffed that ALL my doctors NEVER asked what I eat or how much I exercised, etc.

BarnGir1 profile image
BarnGir1

I have discovered my RLS is less intense if I do not use antihistamines. I did not use decongestant because I knew it made RLS worse but Sue mentioned that several things I was taking make RLS worse so I started trying without several things. I have tried most brands and they all seem to trigger my RLS. Since I stopped all nasal sprays and tablets, my RLS has been much more manageable as I continue to work my way off Requip. Since no two people react the same to any meds or foods it is very frustrating to go back to a trial and error method but that is what I have been doing, with consultation from my GP. Good Luck.

SummerDark profile image
SummerDark in reply toBarnGir1

This is interesting. I'm beginning to think that OTC antihistamines may have triggered my recent bout of RLS.

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