Has anyone out there had my problem. - AF Association

AF Association

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Has anyone out there had my problem.

Tickerprobs profile image

Hey all...It’s that good looking fella from up NORTH again. Still moaning on about his legs. I’ve had long running problems with flakey skin and discolouration of my lower legs: right one in particular. My condition is gradually, gradually worsening in my opinion. I’ve been reading up on vasculitis (which I have)and there is quite a lot of reference to warfarin and the problem side effects it can cause. VASCULITIS being one of them. I’ve taken warfarin since late 2014 when Afib was diagnosed, with no side effects, as far as I knew. I’m wondering, with the onset of this leg discolouration over the past year and longer, if the warfarin is NOW having a negative effect on me. Is there anyone out there with similar experiences.

47 Replies

I have beds taking Warfarin for a number of years.

Although I have very dry skin I find that applying “My Trusty” cream twice a day really helps. “My Trusty” was developed by the burns department at Salisbury Hospital and I believe that all or most of the profits go back to the NHS at Salisbury.

Worth a try.

Pete

Thanks Pete...I use Dermol 500 but I’m more concerned about the reddish blue discolouration. I’ve decided to make an appointment (again) with my GP and discuss, possibly taking an alternative anticoagulant. CHEERS.

I was allergic to Dermol, might still be worth trying My Trusty.

Not sure it is the Warfarin is at the root of your problem.

Pete

Thanks Pete, for your input. Much appreciated. Take care.

Hello Tickerprobs. I don't take warfarin but I too have that mottled purple look to my right leg. I always thought mine was to do with low blood pressure. I also have very thin flaky skin but that's caused by diuretics! Hope you get an answer. It would be interesting to know what the Doctor said 🤔

Hi Bex...The research I’ve done suggests the possibility of warfarin causing vasculitis. Can I ask, which diuretic do you take❓CHEERS.

Hylda2 profile image
Hylda2 in reply to Becksagogo

I take 4 diuretics a day, 1 Spiranalactone and 3 Bumetanide. My legs below the knee are all colours of the rainbow and the skin on my legs cracks and peels. I use E45 cream as an emollient and take Dabigatran as an anti coagulant.

Tickerprobs profile image
Tickerprobs in reply to Hylda2

Hey H...Have you any thoughts on the causes of your rainbow legs ❓❓

Hylda2 profile image
Hylda2 in reply to Tickerprobs

Mine go red when the blood cells burst, then they fade to brown. Lots of blue and yellow bruises, jury still out on the purple!

Tickerprobs profile image
Tickerprobs in reply to Hylda2

Yes H...I also have slight numbness and tightness to the skin, in the discolouration area.

Hylda2 profile image
Hylda2 in reply to Tickerprobs

If it’s like mine it’s fluid building up which splits the skin

Tickerprobs profile image
Tickerprobs in reply to Hylda2

H... we both sound like a ‘sight for sore eyes’. In recent weeks, I’ve been sleeping with my legs raised in bed and I can see a marked difference and improvement in fluid retention.

Hylda2 profile image
Hylda2 in reply to Tickerprobs

If it’s like mine it’s fluid building up which splits the skin

My shins developed some slight brown streaky discoloration several years ago and the skin is quite dry. Yours sounds much worse. My GP tested my blood sugar at the time saying it was common in diabetes and was caused by something called hemosiderin deposition. My blood sugar was normal, however, so he said was an age-related change of no consequence (I was 63 at the time). I do also get peripheral neuritis in the precise same region and I'm sure there's a connection although my GP was less sure (i.e. hot feet and lower legs).

Steve

Tickerprobs profile image
Tickerprobs in reply to Ppiman

Thanks Steve...Yes my lower legs can get very warm and I too have diabetes, although my sugar levels are good apparently. I visited a dermatologist recently and was told I had vasculitis and hyper pigmentation. I’m presently waiting for a call from Doctor and I intend to suggest a different anticoagulant. In all honesty, I don’t have any faith in any so called professionals these days. CHEERS.

Ppiman profile image
Ppiman in reply to Tickerprobs

We have a brilliant GP but since lockdown things have been much less good. I did manage to convince him to actually see me the other week - shock horror. I'm totally unhappy with online or phone diagnosis and feel we should have mass demonstrations against it. As a nation we seem immovable these days but, to me, this is a serious degradation in healthcare.

My cousin has diabetes and his lower legs look mottled and stained, I have noticed. Diabetic neuropathy is what my GP first thought I had, but luckily my blood sugar is normal.

I wonder whether a change to rivaroxaban might help you ?

Steve

Tickerprobs profile image
Tickerprobs in reply to Ppiman

Hey Steve ...Has Rivaroxaban got an antidote for excessive bleeding❓

Ppiman profile image
Ppiman in reply to Tickerprobs

Breathe easy! ;-)

cks.nice.org.uk/topics/anti...

Tickerprobs profile image
Tickerprobs in reply to Ppiman

Thanks for that Steve👍

irene75359 profile image
irene75359 in reply to Ppiman

I couldn't agree more about the degradation in healthcare. The last couple of appointments I have had the doctor has been on speaker and I haven't been able to hear properly, the distortion has been extreme. I have nothing wrong with my hearing either. None of the senior doctors in the practice do telephone appointments and I don't know any of the young doctors I have spoken too, nor do they appear on the practice website.

Yes Irene...There seems to be an atmosphere of ‘what will be will be’, which you can appreciate in a way, what with the unfathomable happenings in recent times.

Ppiman profile image
Ppiman in reply to irene75359

I had a specialist GI “appointment” via Zoom. It was next to useless. People simply must be suffering because of this, and some will be growing eventually untreatable tumours. It’s very wrong.

My cousin has had to take himself to ER this morning as his GP surgery wouldn’t see him all week while he suffered. He’s just been told he has a strangulated hernia that needs urgent action. I don’t know how we got into this mess or why the GPs and government are allowing it to happen.

Steve

irene75359 profile image
irene75359 in reply to Ppiman

That is truly shocking, I hope your cousin is making an official complaint.

Ppiman profile image
Ppiman in reply to irene75359

I haven't seen him as he's currently awaiting his op (this morning). I hope he does complain but, you know, I suspect it is endemic now in the UK. We seem to have moved into a new and worrying phase of primary health care.

Steve

Auriculaire profile image
Auriculaire in reply to Ppiman

People here would be out rioting in the streets if all this telemedicine was being imposed.

Rioting in the streets is ok, as long as you wear a mask, keep a safe distance, don’t break windows, don’t go looting and respect your fellow citizens. In other words, stay indoors. 😇

Or live in a different country 😂😂 the French are anti everything. This government ( in France) should have told the population they couldn't have the jab and then they would have marched in the streets demanding the right to have the vaccination.

Sounds like you can’t abide them. We’re you in the French resistance by any chance. I luuuv onions and snails.

Not true! I love living here but protesting is a French national sport 😂

I once holidayed in Brittany, in my Motorhome days but I found there were a lot of French people about. Did a lot of trips up the North West coast of Scotland and the Outer Hebrides after that. Bumped into a French couple up there but it wasn’t too bad. 🤣

Brittany is lovely!

Ppiman profile image
Ppiman in reply to Auriculaire

We need action here. Our GP situation was weak before and is, by any measure, in crisis now. It’s just that no one is measuring the problem or publicising it for some reason.

How the government is keeping the lid on it, I just don’t know. My guess is that those in most need - older folk - are the most acquiescent. Young ones just bypass their GP and go straight to ER, which are now overrun.

This government is literally getting away with murder. Very many of the deaths from covid were, it seems, entirely unnecessary and now we have this debacle.

Steve

😂So true! All through the pandemic it has been business as usual with the drs where I live in France with no waiting. However hospital admissions got very tricky.

I have vasculitis originally caused by Ramipril, it also effected my kidneys. It as been dormant since late 2012 until 4 months ago, now it reappears ever 3 weeks then fades for two weeks, at the moment my third time is fading again. I now suspect it is Candesartan 4mg. causing it after reading an article in the British Medical Journal. I'm due to see a dermatologist consultant in two weeks time. My RA consultant as recommended to increase the dose to 6mg. but doesnt know about the rashes.

Tickerprobs profile image
Tickerprobs in reply to ATSF

Hey AT...The problem is NOT knowing if the so called remedy can be causing more problems. It’s like a bewildering lottery ‼️‼️

Hello Tickerprobs, I also have discolouration around my ankles, the skin on my feet appeared a lot more crinkley my skin felt like sand paper and was flaking off by the bucket load, was asked to send a photo to the Doc which I did, rang several times regarding an appointment and nothing until January when the Doc rang me and asked what was wrong, this was three months later. She deduced that I had vascular dermatitis and to wear support socks and cream my feet and legs, however I don’t wear the support socks anymore as there does seem to be an improvement.I was interested in your problem as it seems so close to mine. Also having warfarin Ramipril and I am type two diabetic but take no medication for the diabetes, diet controlled. My feet do not swell but they don’t feel the same, hard to describe, get little stabbing jabs in my feet occasionally.

Glad summers over not having to worry about showing my lower legs, just glad I wake up each morning still.

PS forgot I have arthritis and that these lower leg problems started after breaking my hip and having a replacement 18 months ago, still cannot walk properly.

Good luck

Tickerprobs profile image
Tickerprobs in reply to Hatten28

Hey Hatt ...Thanks for that reply. Sorry to hear about your hip situation. Not so much now but I used to get stabbing pains in my feet and torturous itching deep inside the bones of the underside of my feet. Like you, I don’t take meds for diabetes. I take Lanzoprazole, Amlodapine, Lisinopril, Certirizine, Bisoprolol, for breakfast. Then Tamsulosin for evening meal. For supper, I partake in Atorvastatin and Warfarin, washed down with a whisky and coke (mandatory).

Hatten28 profile image
Hatten28 in reply to Tickerprobs

Great to see you have a sense of humour, made me chuckle!

Tickerprobs profile image
Tickerprobs in reply to Hatten28

Well Hatt...I’m glad you find it funny, as he sticks his head in the electric oven ‼️‼️

Hi - I have the same problem, have had it for 4 years now and no one has given me an answer to the problem. I have been on meds for HF and AF for 7 years, I do take Ramipril and Rivaroxaban (never been on Warafin) used to take Bisoprolol but now on Nebivolol and Diltiazem, I am not diabetic. I do sometimes take a diuretic (Fluroseimide) but not very often as although I have HF I rarely get any fluid retention.When this first started I asked my GP, she said she did not know what the caused it but my veins were fine so it was not circulation. If you looked very closely it was in fact very tiny red dots that overall looked reddish/purple. Asked my heart failure practitioner she had no answer and various medics at my regular check ups at cardio clinic, no answer.

The skin on my legs is quite dry but not as bad as some of you seem to suffer and have tried many different creams, I cannot remember the name of the one I am using at the moment (one Bobd recomended) find it quite good but expensive. I also get a very tight feeling under the arch of my foot, feels like there is a elastic band that has been overtightened and can be quite painful, this comes more in the evenings.

Like most of you I hate the way my legs look, No more nice summer dresses, shorts, skirts have to hide legs in trousers all the time.

Like all of you I just wish there was an answer to the cause.

Cassie

Tickerprobs profile image
Tickerprobs in reply to cassie46

Thanks for that Cassie...I’m a little down in the dumps with it, to be honest. At present, it looks like a large bruise above my ankle and right around my leg, going up about eight inches, with flaking nobly skin. Not a pretty sight. I have appointment at the vets at 3pm. How do they put old horses down these days. ❓

I take apixaban anti-coagulant and although not like your warfarin, I have seriously noticed that my legs are really flakey and also so many thread veins appearing not only on my legs, but feet as well. They re getting worse. I did speak to a district nurse and she said it was possibly more likely because of the diuretics. I used to take moduretic, but was changed to co-amilafruse for some reason. I’ve never asked a cardiologist of EP as with Covid it’s hard to see anyone isn’t it.All the best with your legs

Tickerprobs profile image
Tickerprobs in reply to Tapanac

Thanks for that Tap... I’ve just visited my GP and had the discussion about changing over to Rivaroxaban from Warfarin. Although she thinks it’s NOT the warfarin that’s causing my problems, she’s going to consult the ‘experts’ and get back to me about the changeover and method.

I suggested that there is now an antidote but she’s adamant there’s not‼️‼️

I also asked about the changeover routine and it was suggested that I would come off the warfarin for about a week and then start the Rivaroxaban, without any INR tests, which I thought was odd.

The approach I’ve read online, totally contradicts this.

FRIGHTENING isn’t it.

Incidentally Tap, how long have you been on Apixaban ❓

Tapanac profile image
Tapanac in reply to Tickerprobs

I was on rivaroxaban for about a year, but unfortunately I kept getting a urinary infection, although it was easy with just one tablet a day with evening meal, but St George’s changed me to Apixaban and have been on that for about 3 years and touch wood all fine. I got used to the morning and evening tablet very quickly

You’d think your GP would know best, but when I was a bit concerned about no antidote, I was informed there wasn’t a problem s they could give (I think) some sort of vitamin K and as it only had a 12 hour life span unlike rivaroxaban which was 24 hours……. I’ve had 2 operations, tooth removed, internal scans etc and haven’t had a problem.

Good luck to you and don’t worry.

Oh by the way I was also told that apixaban was kinder to stomach and also the brain, which did reassure me as I had brain tumour surgery in 2016

Hydromol ointment has been extremely good to treat the the excessive dryness of the skin on legs. The staining of the skin has to be connected to medication. I went from taking 2 tablets a day to 9 after a heart attack and my legs suddenly started to swell everyday and I’ve got horrible staining on my feet and ankles. I’ve noticed 4 of my meds that I take match yours...but not the whiskey&coke 😉

Thanks for that Whitey...which four meds match mine. ❓

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