Restless Legs and blood thinners?

[Gibbel]

Can restless legs and very low feritin be caused by taking blood-thinning medication and having taken it for a long time? It may be necessary to avoid blood clots in the brain due to atrial fibrillation and flutter. And what do you do if this is the case?I live in Denmark and neither general practitioners, neurologists nor pharmacists know anything about restless legs, neither about symptoms, treatment nor how the disease can be debilitating due to no night's sleep. In the referral from my doctor, I can read that "the patient is quite ANNOYED by restless legs syndrome"! This even though I have explained that my night's sleep due to the augmentation is at best 2 plus 1 hours.Thanks to the fact that I have received a lot of information here and the reference to the Mayo Clinic Updated Algorithm, which I have given to my doctor, I now have hope that reasonable treatment is possible.Gibbel

[Madlegs1]

This is a Link to a post on HU . Which may be useful to you and your medical team.

healthunlocked.com/rlsuk/po...

[ChrisColumbus]

Which blood thinner(s) have you been on, as yes they can exacerbate RLS.

Dipyridamole helps prevent blood clots forming in arteries, reducing the risk of heart attack and stroke. If it is considered appropriate for your condition (*see next Reply) it is generally regarded as being safe for RLS and indeed helpful.

[Gibbel in reply to ChrisColumbus]

It is called DABIGATRAN. And I am having 110mg x 2 - morning and evening at 9.

[SueJohnson in reply to Gibbel]

As far as I know DABIGATRAN does not make RLS worse. However you have low ferritin and blood thinners interferes with iron absorption. Were you able to get an iron infusion?

Some but not all blood thinners do make RLS worse but there is not any good information on most of them. One I do know is safe for RLS is Dipyridamole as Chris mentioned. In fact it can actually help RLS. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a... It can cause breathing problems in some who already have them.You might want to discuss this with your doctor.

[Gibbel in reply to SueJohnson]

Thank you so much for all your information and help !!

But no! In Denmark, it is neither possible to purchase or have an infusion prescribed if the hemoglobin is within the normal range and you have normal kidney function.

I have tried private hospitals and our regular hospitals. Only if tbl. treatment has been tried without success. There are quite a few exceptions, but Restless Legs does not belong among them! I am a little shocked at how little professionals in Denmark actually know about Restless Syndrome! I think it's just about a little tingling in the legs - not that you can actually be more or less disabled by that disease.

Gibbel

[SueJohnson in reply to Gibbel]

Unbelievable that you doctor wrote that you were "annoyed" by your RLS.

Normally I would say take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. 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, 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 to slowly raise your ferritin. Ask for a new blood test after 3 months if you are taking iron tablets.

Since you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness.of the blood thinners and of the iron so check with your doctor. However you can probably take them 3 to 4 hours apart. See prescriptionhope.com/blog-c...

You will need to eat lots of iron rich food which blood thinners shouldn't affect, See lilynicholsrdn.com/iron-abs...

[ChrisColumbus in reply to Gibbel]

I've not seen dabigatran (Pradaxa) specifically mentioned on this forum as being either problematic or otherwise.

Returning to dipyridamole for a moment: while some have found that it positively helps RLS symptoms, it's also been suggested (see Madlegs1 's link above) that it may not be the most appropriate treatment where atrial fibrillation is concerned.

[SueJohnson in reply to ChrisColumbus]

see my reply below

[SueJohnson]

As far as the mention in the other post that it may not be appropriate for people with AF, That is not true - dipyridamole + aspirin is shown to prevent strokes in a people with AFib pubmed.ncbi.nlm.nih.gov/126...

[ChrisColumbus in reply to SueJohnson]

I know that Butterflysun questioned that study because it dates from 2003.

While several US sources suggest that it's OK for Afib,

The British National Formulary still indicates dipyridamole for secondary prevention of ischaemic stroke (*not associated with atrial fibrillation*) and transient ischaemic attacks (*used alone or with aspirin*).

An Australian report from 2021 states "Aspirin, clopidogrel, or a combination of aspirin with dipyridamole are first-line options for secondary stroke prevention *in the absence of atrial fibrillation*".

nps.org.au/assets/AP/pdf/p8...

So I think that Gibbel will need to check the position in Denmark?

[Gibbel in reply to ChrisColumbus]

I will - thank you so much for all your know how and advising !!

Gibbel

[SueJohnson in reply to ChrisColumbus]

The article I referenced was a large randomized trial and specifically studied dipyridamole.

I checked the references in the Australian paper.

The study mentioning dipyridamole just looked at aspirin alone versus aspirin with dipyridamole but there was no mention of AF. It preferred the combination.

The Australian article said there is no role for antiplatelets in secondary stroke prevention in patients with atrial fibrillation as they should be anticoagulated. The study simply said anticoagulants are preferred to antiplatelets for those with AF and it did not mention dipyridamole. It only studied 455 people half of which took anticoagulants and half antiplatelets.

Of course I can't look at the BNF. And just because the study I mentioned was in 2003 is irrelevant. The 2 studies in the Australian article were in 2005 and 2006.

So I stand by my statement.

[ChrisColumbus in reply to SueJohnson]

I am not gainsaying the 2003 research. But doctors will follow local headline guidance for first-line treatment which - in two countries at least - seems to be not to use dipyridamole with aspirin for patients with atrial fibrillation (other than in certain circumstances).

That guidance may be nonsense - like "IV iron is too dangerous to use for RLS", "rotigotine is fine after DA augmentation", "statins for life are the only treatment for cholesterol", "RLS is just a trivial nuisance"...

Whether or not dipyridamole is considered OK in cases involving Afib in Denmark is simply a matter for Gibbel to check with their doctor. That's all. No big drama.

[SueJohnson in reply to ChrisColumbus]

OK - I agree he should check where he lives.

[Retiredlady]

I also take blood thinners (Eliquis)to prevent stroke because I have AF.

Fortunately it does not my restless leg symptoms worse so hopefully u have the same result.

[Jelbea]

I take rivaroxaban (Xarelto) for prevention of strokes and heart attacks. It is a once a day dosage. I do not take it for AF but because I have a rare blood cancer which causes raised platelets and danger of clotting. I also have severe RLS (lifelong - I am 81) and it is controlled very well at present with sublingual buprenorphine. The blood thinner did not make the RLS worse. Hope this helps

[Geniemb]

Hi, I have suffered with CHRONIC restless leg syndrome for many years, to the point of wanting to chop my legs off, sounds silly I know but having RLS is purgatory!!! Torture!!!! Anyone, doctors and the like cannot possibly know if they haven’t experienced it so one gets fibbed of. I think they assume that a sufferer sits and waggles their knees from side to side, IT IS NOTHING LIKE THAT!!!! Once an attack starts, sleep is out the window!!! I can only sit or lie for the count of five ( and that is not seconds) all night!!! Walking back and forth like a caged animal!!! Usually it can subside when it is time to get up, say 6 or 7 am mine goes on until about 10 or 11 am that is 12 hours or PERGATORY . I have been taking blood thinners for maybe a year or two now , not noticed a difference! Many years ago I put myself forward for a clinical trial but they said I was too chronic a sufferer to risk getting a placebo, I would have known straight away!! If you know of anything that helps RLS PLEASE LET ME KNOW.

Regards

Gina MAHERBURNS