cetirazine and RLS

[Stelladevico]

Just had a really bad night after taking a cetirazine as I have some really bad insect bites. Anyone also found that this antihistamine triggers RLS?

[ChrisColumbus]

Cetirizine is generally regarded as being safe for RLS. Any other recent changes to either meds or routine?

[Stelladevico in reply to ChrisColumbus]

Hi, thanks for replying & this is what I said to Sue J

The only other thing was I used rather a lot of a cream for the insect bites that contains diphenhydramine. I applied it several times as the bites are huge, but I didn’t think something topical would aggravate the RLS?

[ChrisColumbus in reply to Stelladevico]

Diphenhydramine taken orally (Benadryl) has been reported as exacerbating RLS, but whether the cream is a culprit....

[SueJohnson]

I agree with ChrisColumbus. It is safe but everybody reacts differently to medicine. Did you do anything differently like eat a different food or take another OTC product?

[Stelladevico in reply to SueJohnson]

The only other thing was I used rather a lot of a cream for the insect bites that contains diphenhydramine. I applied it several times as the bites are huge, but I didn’t think something topical would aggravate the RLS?

[SueJohnson in reply to Stelladevico]

I bet that did it as it is known to make RLS worse. It would have been absorbed through the skin.

[Stelladevico in reply to SueJohnson]

I have used it before but only a little. These bites are huge and really sore as well as itchy, so I think I must have got carried away and put on far too much. Won’t be doing that again.

Thank you .

[SueJohnson in reply to Stelladevico]

It's a shame because it really is the best for itchy bug bites.

[Joolsg]

It's supposed to be a safe anti histamine. I take it every night for long covid.However, with this disease, there are always exceptions to the general rule.

Loratedine is also supposed to be RLS safe, so you could try that.

[ELLSBELLS in reply to Joolsg]

We really are all different as loratedine drove my legs mad.

[Cobobay in reply to ELLSBELLS]

I take loraradine daily buy have been taking it later in the day and I'm now waking up with my legs driving me mad and haven't been sleeping from about 1am this last week, I'm shattered and more irratible than usual, may try cetirizine again.

[WWJDforme]

I haven't noticed that, however, I'm wondering if you're on to something here because the last 3 night's I have had to take my cetirizine as well and my RLS has been HORRID... I have noticed that any processed foods that contain corn syrup absolutely triggers my RLS. I suffer RLS sense Military Nerve Agent exposure 32 years ago and over ghe past 2 years it has gotten severe. It is pretty much constant 24 hours a day. I'm on Carbadopa Livadopa for 7 months now and it 100% controlled it for 5 hours a day with 1 pill. Unfortunately though my body is breaking it down at about 3 hours a day now and you can not take more then 6 pills of it daily because if the stroke risks. So I'm paying more attention to triggers. Thank you for the ?? On Cetirizine?? I will check the next 2 nights and see how it goes without taking my citirizine and then see in 3 days by taking my cetirizine again to see if it triggers the RLS and let you know.

[SueJohnson in reply to WWJDforme]

if you are saying that the Carbadopa Livadopa stops working after 3 hours, then you are augmenting. 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.

Unfortunately that means you need to get off it. Carbadopa Livadopa, ropinirole and pramipexole, are no longer the first-line treatment for RLS, gabapentin or pregabalin is. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. To come off Carbadopa Livadopa reduce by 10-100 mg 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 a low dose opioid temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it. On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US if you list there - it helps to say where you live on your profile so we can better help you.) Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. 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 1-2 hours before bedtime. 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 divide the doses on pregabalin) Most of the side effects of gabapentin or pregabalin 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 of pregabalin) daily." If you take magnesium take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it 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 as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

Have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal.

If you haven't had your ferritin tested, since you are suffering from augmentation, it is important that you do so.

[WWJDforme in reply to SueJohnson]

I have been on Ferechel Ferritin for 7 months. It helped with the panic attacks brought on by Severe RLS and PTSD. However, it has not helped with the RLS as of yet. My ferritin iron levels went from 48 to 67 though.

[WWJDforme in reply to WWJDforme]

Can't take Gabapintin due to side effects. I found out by research about augmentation aas well as ferritin. Waiting for my Neuro apt in July about the Carbadopa Levadopa Augementation

[SueJohnson in reply to WWJDforme]

You might want to try pregabalin. Although it is basically the same drug except you don't 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.

[SueJohnson in reply to WWJDforme]

How many mg is the Ferrochel Ferritin?

[SueJohnson in reply to WWJDforme]

You may know this but just in case you don't: take your iron tablets with 100 mg of vitamin C or some orange juice since that helps its absorption. 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 or calcium take them at least 2 hours apart since they interfere with the absorption of iron. 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. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. 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 3 months.

[Joolsg in reply to WWJDforme]

The severe RLS and PLMD has been made 1000% worse by carbadopa levodopa.Do NOT let the neurologist transfer you to Ropinirole, Pramipexole or Neupro patch. Your D1 receptors have been over stimulated by the dopaminergic drugs and may be permanently damaged.

You say you can't take gabapentin because of side effects? The common side effects are dizziness, drowsiness and water retention or weight gain. These often settle within 2 months. Pregabalin is in the same class of drugs as Gabapentin ( Alpha2Delta ligands) but can have fewer side effects for some people.

Neither drug helps RLS until about 3 weeks after the last dose of carbadopa levodopa.

Alternative meds, as per the Mayo algorithm and NHS and NICE guidance are low dose opioids.

Keep us updated and we can guide you through withdrawal.

Please note that most neurologists are not familiar with RLS or the correct, up to date treatments because they have never studied the disease. Parkinson's specialists are usually the ones who over prescribe dopaminergic drugs.

See this article that explains the problem.

sleepreviewmag.com/sleep-tr...

Also spend some time looking at Dr Berkowski's webcasts. He refuses to prescribe dopaminergic drugs due to the permanent damage they have caused to RLS patients.

relacshealth.com/blog/why-a...

[SueJohnson in reply to WWJDforme]

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, 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, 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, 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, using a standing desk, listening to music, meditation and yoga.

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.

[Joolsg in reply to WWJDforme]

Carbadopa levodopa is only supposed to be prescribed for intermittent RLS and used sparingly ( maybe 2 or 3 times a month). The reason why it is NOT prescribed for daily use is because it has the highest rate of drug induced worsening of RLS ( augmentation).The only solution is to reduce slowly.

Follow SueJohnson reduction schedule.

Your RLS will continue to worsen unless and until you get off the stuff.

This has been common knowledge amongst experts since 1996.

pubmed.ncbi.nlm.nih.gov/872...

Who prescribed it?

[Enable]

I use cetirazine for my dust and pollen allergies but it has never affected my RLS

[wendersgame]

I've taken cetirazine for years on a daily basis for a severe dust allergy and it doesn't affect my RLS - if it does, then my body got used to it ha ha! Is it possible that just the sheer number of bites you have and the general levels of histamine (from the bites) could have triggered RLS. The antihistamines are great, but I don't find they always get rid of all the histamine when I get an allergy attack, so perhaps that could be part of the issue - the bites themselves and the histamine surge they caused?

[Clair56]

I was on klonopin for years and had to be took off of it because of other meds. and that’s when I got rls , has anyone else had this problem after coming off klonopin ?

[Joolsg in reply to Clair56]

What other meds were you on? It could be that the other meds are the problem, not the klonopin.

[Gmc54]

I've found Hc45 cream helps with insect bites.

[silkyreg]

I take Black Cumin Seed Oil for my pollen allergy and it helps so I don't need Cetirizin anymore. For insect bites I apply Tea Tree Oil.

[Typicallygaslit]

It’s absolutely awful for me. Topical creams can indeed make me go insane with RLS.

[Chiby-azul]

I had the same experience with any antihistamine worse if taking at night the only one I can take is Benadryl in the morning if my nose is very congested otherwise I skipped all of them increased the intensity and also more hours until I feel my legs calmer. I’m trying to rinse my nose twice a day and some natural supplements but because my skin is also affected I had bought different kinds of creams to rub the affected area and is working for me. Good luck in finding something different that help you

[SummerDark]

Interesting post. I've been taking cetirizine and I'm beginning to wonder if it's triggered my latest bout of RLS. My RLS has stopped for the past two weeks. Hayfever season is finished and I've stopped taking cetirizine. Did you find out if it was cetirizine in your case? Did you find a successful alternative?

[Stelladevico in reply to SummerDark]

Hi, I haven’t had the need to take antihistamines but I think it was the excessive use of the cream that triggered RLS.

[SummerDark in reply to Stelladevico]

If it's just to alleviate itching from insect bites, I use a really tiny bit of 4% or 5% lidocaine, such as Emla. I find it's very effective. Check ingredients etc for reactions.