Pain in ankles and lower legs - Atrial Fibrillati...

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Pain in ankles and lower legs

maria68 profile image
48 Replies

I stated to have aching and numbness in ankles and legs once I started on Apixaban. Cardiologist changed my anticoagulant to Riveroxaban. I still have the same problem.

Does anybody else find this?

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maria68 profile image
maria68
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48 Replies
Buffafly profile image
Buffafly

Do you take any other medications?

maria68 profile image
maria68 in reply to Buffafly

Yes I take Diltiazem and BP medications. Also metformin and Gluclazide for diabetes type 2.

Buffafly profile image
Buffafly in reply to maria68

Diltiazem and diabetes 2 both affect circulation, don't know about the others. Perhaps you need a review?

maria68 profile image
maria68 in reply to Buffafly

The strange thing is that it started when I took my first anticoagulant. Is it a coincidence I wonder?

Buffafly profile image
Buffafly in reply to maria68

Maybe a combo effect with your other condition/meds? I take Diltiazem and have problems with my legs and feet including swelling which a doctor told me is due to 'capillaries leaking'. I hadn't thought of any connection with Apixaban but maybe there is.

maria68 profile image
maria68 in reply to Buffafly

The swelling definitely got worse when I started taking Diltiazem.

maria68 profile image
maria68

I need to see my cardiologist and try another anticoagulant. Thank you for replying

Ppiman profile image
Ppiman

That’s interesting. Is it peripheral neuropathy? I have that and it has worsened this year, maybe linked to my taking rivaroxaban.

Steve

maria68 profile image
maria68 in reply to Ppiman

I’m going back to another GP about it. I’ve already spoken to 3 different doctors and they didn’t seem concerned.

Ppiman profile image
Ppiman in reply to maria68

If your doctors all thought it was neuropathy, and depending whether you’re over 60, they seem to view that condition as one of the “getting older” ailments that can’t be treated - so is best treated lightly or ignored.

Steve

maria68 profile image
maria68 in reply to Ppiman

They didn’t even say what they thought it was! Obviously not concerned or no time to follow up?

I am well over 60!

Ppiman profile image
Ppiman in reply to maria68

I should hope that they’d always be bothered if it mattered. It’s with long-term conditions where there’s no answer when they feel stuck and can then can seem not to care. They should try harder to seem more interested, but it’s not the easiest job, I’m sure.

Steve

in reply to Ppiman

And it is absolutely not a normal part of aging, according to my doctor. Being overweight, having diabetes and not exercising all contribute to circulatory problems in the lower legs. He is big on prevention starting at a young age and claims that many of our problems are medical issues that arose from lifestyle choices.

I have a problem with one leg due to an improperly done medical procedure in 1974. They pumped that leg full of dye for a lymphangiogram before ascertaining that I was allergic to the dye.

The other leg is perfectly fine. My clots always form in the bad leg. While Xarelto cleared up the DVT's it did lead to capillary leakage in that leg, additional swelling and severe knee pain, making it impossible for me to exercise, which is why the doctor was on board with me stopping it as soon as possible.

Ppiman profile image
Ppiman in reply to

I didn’t realise you were referring to an issue like that, sorry. I thought it was possibly a neuropathy. Bad luck, eh? That must have frightened the life out of the doctors, too, at the time.

Your GP is right about prevention - but it’s hard to lead a life of denial in the modern age where alcohol and calories are pushed at us from every angle.

Luludean profile image
Luludean

Yes Maria, I have been posting about this for months. My cardiologist told me he was not responsible for the side effects the pills he puts me on. I have persistent AF.

My joint pain , especially in feet , has got much worse and now a rheumatologist diagnosed Polymyalgia and I am on large doses of steroids which help pain but I wake at 3 or 5 and do not go back to sleep.

I can feel myself spiralling into deep helplessness.

Wish , as I have said so often ,that specialists could see one as a whole person , not just one particular condition. GP s are hurtling from one crisis to another , overworked and limited by devastating cut backs. It is rare to find one that has the time or inclination to listen..

I hope you get done sense from somewhere soon!

maria68 profile image
maria68 in reply to Luludean

Thank you Luludean for replying. I have mentioned this problems to 3 different doctors already and nobody seemed concerned. I’m making another appointment next week and insisting on some kind of referral.

Luludean profile image
Luludean in reply to maria68

Maria let us know when your referral is! Are you in the UK?

maria68 profile image
maria68 in reply to Luludean

Yes in north east

Auriculaire profile image
Auriculaire in reply to Luludean

Polymyalgia rhumatica is not a disease of joints but of muscles. The clue is in the myalgia. It normally affects the hip area , upper thighs, shoulders and neck . I am surprised you were given a diagnosis of this if your pain was confined to your ankle joints. I think your cardiologist's attitude is appalling. Basically it's like saying "I'm not responsible for poisoning you". Because that is what so many "medicines" are -poison. Not a poison that kills us (though some do that too) but ones that poison our health in one direction whilst papering over the cracks of symptoms and never actually providing a cure. Many doctors refuse to even acknowledge that the drugs they prescribe have side effects, others cone out with the comforting ( to them) mantra that they are very rare. Well that's no comfort to you if you happen to be the unacknowledged rare person. Plus it's garbage anyway as they base this on the figures given by Pharma which massively underplay side effects.

Unfortunately with the stroke risk from afib we are between the devil and the deep blue sea when it comes to taking anticoagulants. Those that have no side effects from them can take them happily knowing that their stroke risk is being greatly reduced. Those who do get side effects have to balance the prevention of something that might never happen anyway against daily discomfort that impinges on their quality of life.

I have been on Apixaban since March. I have seen a deterioration in skeletal pain.

Luludean profile image
Luludean in reply to Auriculaire

Hi , Auriculaire, I am totally lost!!!!

I spent 6 months of last year with increased joint pain. Back especially , then wrists, knees and then because if walking badly I got Plantar Fasciitis.

GP said that at my age I had to expect a lot here flare ups, I was so angry. I am not over weight ? Not sedentary and try to keep quiet about valve repair and Persistent AF.

Private man shoved Steroids into my back and, pain went till I started aching all over and feeling flu y , 2 months ago. Knowing I would be told it was my age I went privately and saw rheumatologist. He diagnosed arthritis in many places, took blood tests and diagnosed Polymyalgia. Put me on steroids.

However when I got his letter he wrote that I had psoriasis on my arms, had a normal heart and was in sinus rhythm . This threw me!!!!!! He never checked heart or pulse.

I had no psoriasis and my heart is certainly not normal and I am in persistent AF.

I asked him if the letter had gone to wrong patient.

He was”grateful “ that I had pointed this out!!!!!!!

Told me to reduce steroids and there was no reason to make another appointment.

On reduced steroids I am back to square one ! Feet hurting and difficulty in getting out of bed or going down stairs .

Damn!!!!! Usually I go out for walks or garden to de stress .

Staying in makes one so self centred , steroids make me cry at everything. It is SO embarrassing!

I can’t stand any more hurdles. Feel like I am in limbo.GP won’t comment on a private hospital letter.

Interesting that so many have written in querying joint pain and Rivaraxaban / Apixoban.

maria68 profile image
maria68 in reply to Luludean

I agree with you. Nobody really knows the effects of the anticoagulants. It just has to be trial and error.

My problems have made me feel very depressed as well. I always cheer up when I see my lovely grandchildren!

Auriculaire profile image
Auriculaire in reply to Luludean

I still garden . It's the only thing that cheers me up when I am in pain. Somehow just being outside among my plants and the insects makes me forget my pain a bit. I cannot do as much though. Onl y a couple of hours a day whereas I used to be able to do four hors a day. Luckily here it is warm enough to garden most of the year . Only when it rains and during the heatwaves it is not possible. Did your skeletal problems come on suddenly or have they been gradually building up? My GP tested me for giant cell arteritis a few years ago which is related to polymyalgia because I had scalp pain and headache but in fact it was just part of my floxing symptoms!

Lyubov profile image
Lyubov in reply to Luludean

How sorry I am that you're having such a horrible time with these cardio meds. I too have been going through Hades since diagnosed a few months ago. The Apixaban (Eliquis) side effects haven't been the most difficult so far -- yes more bruising, under the skin small bleeds & so on. But Diltiazem caused me to spiral downward very rapidly with joint/muscle aches, fluid retention (each day my weight rose!), constant mind fog. Was just switched to Motoprolol Titrate 25 mg 2x day. The side-effects are diminished, except for nausea & some mind fog, but reduced. As someone hear wrote, I do feel I'm between the "devil & the deep blue sea." But I encourage you to ask your doctor for an alternative to Diltiazem. It was a nightmare for me.

mavisrich profile image
mavisrich

yes I did on edoxaban and went back to warfarin. Much better again now!!

maria68 profile image
maria68 in reply to mavisrich

Did all the aching and swelling disappear?

mavisrich profile image
mavisrich

well I know I have arthritis which is still there but the weakness and so on has gone. I definitely believe it was the edoxiban. Dr Sanjay Gupta said to change back onto warfarin and see if I felt better and I do.

maria68 profile image
maria68 in reply to mavisrich

Good old Dr Gupta- always sound advice!

lucycuf profile image
lucycuf

I got really bad pains in my legs and joints from rivaroxaban and changed to apixaban - apixaban not so bad but both nasty things - guess you have find what suits you

2 weeks in to taking them my joints start to seize and I feel 10 years older but the riveroxaban kept me awake with the pain and made me actually cry - apixiaban not so bad

maria68 profile image
maria68 in reply to lucycuf

Thank you for tell me- I’m sure it’s the Riveroxaban

Luludean profile image
Luludean in reply to maria68

I think so too Maria but no one will confirm it. Waiting to see my go on Monday . Have made a double appointment .

sulli6van profile image
sulli6van

12 months after mitral valve repair and surgical ablation I was taking warfarin as an anticoagulant and no other drugs. I had some occasional mild cramping in lower legs and feet usually when getting up in the morning with occasional numb crawly feeling. Cardiologist recommended Apixaban and so did GP. Three months later I am seriously considering going back to warfarin with home monitoring. I have a lot of pain in hip area with Apixaban which I have never had before - cramps in back - very lightheaded at times and generally not right. I guess its our choice.

maria68 profile image
maria68 in reply to sulli6van

It is our choice but we are never told of the full side effects of medications. Even told that it can’t be the medication that’s causing the problem.

sulli6van profile image
sulli6van in reply to maria68

Yes absolutely which is why I stopped all other medication (bisoprolol) so that I knew it had to be the anticoagulant. Doctors have said to me that everything has side effects even food if you eat too much of it - how helpful is that? Reading the fact sheets for various NOACs it seems that many of them carry similar side effects apart from those associated with bleeding etc. We are unfortunately between a rock and a hard place and have to accept that we may be among the unlucky ones who do get side effects. What else can we do?

Luludean profile image
Luludean

Maria!!!!! You have spurred on a torrent of replies! Many saying joint pain started after leaving Warfarin and starting Rivaraxaban or Apixaban. I feel almost vindicated!!!!! Surely some serious investigation should happen now!

maria68 profile image
maria68 in reply to Luludean

I’m going to report back to my cardiologist and he may suggest where to follow it up.

Luludean profile image
Luludean in reply to maria68

What did the cardiologist say in answer Maria?

maria68 profile image
maria68 in reply to Luludean

He’s not keen to change my anticoagulant. He suggests I have a B12 levels check because I’m diabetic and take Metformin( which lowers levels).

The other thing I’m doing is checking my back with a physio in case it’s due to back issues that I’ve had in the past.

I’m going to return to him again if there’s no improvement.

Luludean profile image
Luludean in reply to maria68

Good luck with that Maria

canadiananna profile image
canadiananna

I have been experiencing swelling of feet and ankles for over two years now. I also have the ankle pain and sometimes a kind of numbness in my feet - always very cold, sometimes my feet are white - it looks like I have tanned while wearing socks . I have a new GP due to my former one retiring - his answer "you have a (meaning one) varicose vein - that is what causes all these symptoms. My response was to beg to differ as I did not have varicose vein before all the symptoms started. I think it is a circulation/side affect problem caused by the drugs - but how can you argue with the Doc.

maria68 profile image
maria68 in reply to canadiananna

There are a number of people here that have responded to this complaint. Go to a different doctor and mention it?

I’m going to discuss it again with my cardiologist.

canadiananna profile image
canadiananna

I am no longer under the care of a cardiologist. Once he diagnosed AF and prescribed the medication - I was "turned back over" to the care of my GP - who continues to prescribe the same medication with little interest in whether it continues to work or needs changed. In order to go back to the Cardiologist I would have to get referred and wait months to get in again. I am planning to do this in the near future.

maria68 profile image
maria68 in reply to canadiananna

Good for you.

Luludean profile image
Luludean in reply to canadiananna

I am in the same boat Canadiana

canadiananna profile image
canadiananna in reply to Luludean

Very frustrating. What do you hope to do about it?

Luludean profile image
Luludean

I honestly don’t know what to do. Joint pain is accelerating started in foot now in ,feet, knee, hip , back and now right wrist.

Can only take paracetamol.

Waited 18 months to get NHS appointment in rheumatology , lovely lady doctor actually listened !!!! Arranged 2 MRIs. I got to first MRI location , all psyched up because it was on my spine and would take 45 minutes. To my horror they did not have my cardiology notes and outcome was I had no MRI.

I was distressed!!!!

I eventually have MRI rebooked.

maria68 profile image
maria68 in reply to Luludean

Let me know how you get on.

Shc1973 profile image
Shc1973

I started on xarelto 3 weeks ago and have pain in my ankle in the leg I had the DVT in. I was wondering if others had the same experience. I was afraid it could be another clot but I think it’s the medication

maria68 profile image
maria68 in reply to Shc1973

I’m convinced it’s the medication for me anyway. I’m trying to change.

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