Eliquis (apixaban): My severe RLS has... - Restless Legs Syn...

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Eliquis (apixaban)

Philix profile image
22 Replies

My severe RLS has been controlled very well since starting Methadone in July. Three weeks ago I was put on Eliquis (blood thinner) due to A-fib and have since returned to RLS every night. Has anyone else experienced this possible side effect of Eliquis? I’ve been told by my doctor that it is not an RLS trigger so I am mystified.

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Philix profile image
Philix
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22 Replies
ChrisColumbus profile image
ChrisColumbus

While there appears little evidence here it was mentioned by an RLS sufferer some years ago as apparently exacerbating his symptoms.

Beyond this however the NHS here in the UK advises that if after taking Apixaban "a feeling of numbness or tingling in your arms or legs" occurs it should be taken seriously as it could be indicative of bleeding in the brain. This would be a rare reaction, and should therefore be unconnected with your symptoms as you know RLS and how it presents....

Have you changed anything else recently?

Philix profile image
Philix in reply toChrisColumbus

Thanks for the info, Chris! Nothing else has been changed. I may be one of a few to be bothered by Eliquis.

ChrisColumbus profile image
ChrisColumbus in reply toPhilix

I've been on 75mg aspirin a day for the last 18+ months: no problems with that!

SueJohnson profile image
SueJohnson

Many blood thinners make RLS worse. A safe one is dipyridamole.

Philix profile image
Philix in reply toSueJohnson

Thanks so much, Sue! I will look into the dipyridamole.

Butterflysun1 profile image
Butterflysun1 in reply toPhilix

see my reply to sue. Not all blood thinners are equal or used for the same purpose. If I was you I’d be SO disappointed if this wretched RLS was controlled and then flared up again but not all blood thinners will work for you. Warfarin used to be used for AF but has the downside of needing regular blood tests to keep it within safe limits. Hope you find a suitable answer

Philix profile image
Philix in reply toButterflysun1

Thank you so much for your input. I am moving very cautiously with all of this. Yes, it has been very disappointing (devastating)to have the RLS symptoms return due to one or both new A-fib meds. But the A-fib diagnosis is very new and I have much to learn about it and many test/procedures still to come. I haven’t yet requested any change to my new meds. I’ve decided instead to try taking the methadone at different times of the day. I started this two days ago and so far it appears to be working. I’m feeling quite encouraged today.

Butterflysun1 profile image
Butterflysun1 in reply toSueJohnson

dypiridamole is not a blood thinning treatment for atrial fibrillation that I am aware of. Thankfully drs who know about AF are responsible for prescribing but we must be careful what we are advising. The point about AF is that the irregularity in the heart beat can allow mini clots to be formed in the heart then fired off into the circulation and lodge eg in the brain and cause a stroke

SueJohnson profile image
SueJohnson in reply toButterflysun1

See pubmed.ncbi.nlm.nih.gov/126....

Butterflysun1 profile image
Butterflysun1 in reply toSueJohnson

that is dated 2003, 19 years ago, before more modern treatments and concepts were developed.?

SueJohnson profile image
SueJohnson in reply toButterflysun1

True but if other blood thinners make RLS worse and dipyridamole doesn't, at least it shows it can be used if one has AF.

Butterflysun1 profile image
Butterflysun1 in reply toSueJohnson

I expect there are other alternatives. The risk of stroke in AF is very high & I imagine most folk would want to avoid a stroke. I can’t imagine how awful it would be to have both the effect of a stroke as well as RLS. If dypiridamole had been shown to have adequate stroke prevention success there would have been no need to develop the newer treatments/prevention

SueJohnson profile image
SueJohnson in reply toButterflysun1

There are other possibilities. I haven't been able to find anything about them and RLS. (I mention dipyridamole because I know it doesn't affect RLS and has actually been used as a treatment for RLS, but I won't suggest it for those with AF). Here they are: Xarelto (Rivaroxaban), ticagrelor (Brilinta), and Fragmin (dalteparin).

Drls profile image
Drls

Hello, I have also recently started on a blood thinner/ anti platelet clopidigrel and have had the same experience… also I tried dypiridamole however had an intense reaction - like a super intense migraine and vomiting - I read somewhere it’s best not to take dypiridamole if you have migraines but I had not had one for a good twenty years so I thought I’d be ok - apparently not. Just a heads up! Before you try it.

Philix profile image
Philix in reply toDrls

You’re input is so appreciated. I haven’t spoken to my cardiologist yet and I will add this to my list of questions/concerns. I’m experimenting this week with adjusting the times that I take my methadone dosage. I’m hoping to fix this problem myself without having to change any of the medications. Wish me luck!

Riccio1 profile image
Riccio1

Hello Philix, this is Riccio1, 78 year old super fit male. I have had RLS since I was 16, until about 50, it was just a bit annoying. Since about 55, I could sort of sleep, but wife 20 years younger couldn't sleep with all my movement. At 60, my new family doctor put me on 0.18 mg of Pramipexolo with good results - but the RLS is much better if I eat nothing sweet and go light on the carbs after about 6 pm. In January of this year, I discovered I had very infrequent problems with high pulse rate (180 bpm during a high fever). To be safe my doc put me on 5mg of Eliquis per day. I understand that the Pramipexolo is actually a treatment for alzheimer's, but we were getting a bit desperate.

So far, 10 months of Eliquis and no strange issues. A friend who has a very severe RLS, seems to be (according to him) 95% cured with the Pramipexolo, he is taking 0.30 mg per day.

I still wake-up two or three times per night, but with a short 2 minute walk around the house, I go back to sleep as soon as I hit the pillow. I tried the 0.30 mg, Pramipexolo but felt a little drunk during the day.

Hope this helps.

SueJohnson profile image
SueJohnson in reply toRiccio1

I'm glad pramipexole works for you but please don't recommend it to others as it is no longer the first line treatment for RLS as up to 70% of people on it will eventually suffer from augmentation and they can be hell to come off of and if one is on them long enough the dopamine receptors may be damaged so that gabapentin and pregabalin which are the first line treatment may not work.. And you need to be aware of the signs of augmentation.

Philix profile image
Philix

Thanks Sue, that is exactly what happened to me with pramipexole. I was on it for years and developed severe augmentation. It took months to wean off and the result of using it for that long (for me) is that Gabapentin and pregabalin will not work. I’m so grateful that Methadone has helped me and that I have a doctor who will prescribe it, but I would so much prefer that Gabapentin could have been my answer -for now and for my future.

serengazer profile image
serengazer

Similar experience. Methadone has transformed my life even in a small dose of 3mg. Was on Pramipexole for 8 yrs till augmentation took over. Neurologist than put me back on a old treatment Levodopa which also stopped working. Started Methadone 11 months ago and feel like I finally at 63 have my life back! Discussed, pleaded and educated my doctor for a year before he agreed to try it. We are both amazed at the results! Haven’t needed to up dose so far. All the best to those still trying to find relief and a medical community willing to allow new treatments. T

G-Pixie profile image
G-Pixie

My mother was on Eliquis for years and had RLS subsequently… suspect it may well be a side effect, listed or not. Most pharma companies have a patient contact line. Worth a chat probably. I think newly discovered side effects for established meds are rarely reported - doesn’t mean they’re not causing issues. Just my view. X

MelissaJJ profile image
MelissaJJ

Hi Philix.I too seem to have a correlation between Eliquis and RLS I’ve been on Apixaban for approximately 2 years (Thrombosis in the brains sinuses) The RLS at night is horrible and causing major sleep issues. Although mainly at night I do feel a slight heaviness and uncomfortable feeling in my legs throughout the day but that may be because I’m exhausted from being up all night. Plan on seeing my DR’s again and plead for them to listen to my theory. I think that it is a genuine side effect and needs to be noted.I hope you and others find a solution to this issue . Regards Melissa. Australia

in reply toMelissaJJ

Hi Melissa, I love a good medical mystery. I’ve been reviewing possible reasons why Eliquis increases symptoms of RLS. First, I read that Eliquis sets in motion a cascade of chemical events that lead to its anti-clotting ability. One of these steps is that it inhibits thrombin. According to this article, thrombin increases calcium ions and calcium influx and this influx, as we know, though not stated in the following article, is needed for dopamine transmission. That’s why calcium channel blockers, which block calcium influx, can increase symptoms of RLS. So, even though Eliquis is not the same as a calcium channel blocker, it is a thrombin antagonist and thrombin prompts that calcium ion influx:

ahajournals.org/doi/10.1161...

Think of it like baking a cake. Calcium channel blockers stop you from turning the oven on. Eliquis takes away your flour. This is all one big guess on my part, but something is up when this many people get worsened RLS symptoms

And here is a quote about calcium channel blockers being dopamine antagonists:

 “Therefore, all calcium channel antagonists tested reduce dopamine neurotransmission in vitro and in vivo, whereas the evidence of toxicity for dopamine cells in vitro is restricted to flunarizine, cinnarizine, and diltiazem.”

Most CCBs do cross the BBB. The one that crosses it least, if at all, is Amlodipine and thus should probably be the choice for those with RLS who need a CCB…fyi.

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