Sticky Blood-Hughes Syndrome Support
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Urination issues whilst taking Warfarin

Has anyone else experienced urination problems whilst on warfarin ?

This is my second week of being on warfarin. My dose was put up from 3mg to 5mg on Wednesday.

I am now feeling very swollen around my middle and having trouble passing urine.

My legs are aching and I have low back pain.

23 Replies

What is your INR? Are you also taking baby-Aspirin?

I see here in my book that I started with 3 tablets à 2,5 mg. Two days later I had INR 1.4.

I felt awful and had pain in foot and vertigo and numbness in fingers etc. Took some time and felt bad in the beginning. Tell the Specialist with the urine and if you have a lot of symptoms.

Best wishes from Kerstin


My INR was 1.3 on Wednesday, the hospital increased the warfarin to 5mg,

My previous medication of clopidogrel and aspirin has been stopped.

I am experiencing lower back pain, muscle pain in my legs and I am having trouble urinating.


I suspect that the sudden stop in clopidogrel and aspirin and now on a low INR means your body is struggling with a too low anticoagulation. They should really have let you keep say aspirin going until the INR was a little higher. Both Clopidogrel and aspirin are anti platelets which makes the blood less sticky, warfarin thins the blood. You must seek medical help incase you need some heparin to bridge you or as has been suggested, an infection.

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I was originally still taking the clopidogrel with the warfarin but I was asked to stop taking it.

My INR on Wednesday had only risen a little too 1.3 so the warfarin was increased to 5mg.

I had been feeling very swollen around my middle to the extent I looked a good nine months pregnant.

I think I am reacting to the sodium in the warfarin it makes me retain a lot of fluid hence my current problem.

I rang 111 last night.

After hours of waiting at 2.30am a Dr called to see me he says I have an infection and agrees with me I could be having a reaction to the sodium.

I am very salt / sayline sensitive and have had problems in the past whilst on sayline drips.

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So what did he tell you to do or has he prescribed anything?


Hi, you must go and seek medical help you could have an infection, which could turn into a kidney infection if not careful, please go to the GP or hospital and get checked out please. you can check your INR out at the same time. MaryF


You admins are great when in a crisis and offer so much good advice you provide us with comfort just knowing you understand and give support...............thank you all. XX

111 was called and an infection has been diagnosed together with a possible reaction to warfarin.

The interesting thing is I googled warfarin and urine problems.

I found a site where others had experienced the same as I.......

They had also been diagnosed with infections since newly starting warfarin.

I am to contact 111 if any change in symptoms or go straight to the I wish the Dr who came out on night duty was my registered Gp..........although he did not fully understand Aps he actually listened to what I was saying.

I am going to see if the haematology dept is open this morning so that I can have a word with someone.

Once again a BIG thank you ladies.


Get well soon. MaryF


Im glad you have been checked over. When they asked you to stop the clopidogrel and Aspirin with an INR of 1.3, you might as well not have been taking anything as that is only slightly above what peoples INR would be if they are not taking an anticoagulant. Remember its not the amount you take of the warfarin that matters, its what the dose is that gets you to your therapeutic range. Some people will need 15 mg's to do the same job that others will need 8-9mg's and others 25mg's. Everyones body has a different way of metabolising it.

If you are having issues with the sodium then its possible that warfarin will not suit you. I didn't know this but apparently there is an injection (5mg) that you can have but then if you have to inject Id use LMWH, which many of us have to do.

Apart from getting the infection and the side effects under control, the MOST important thing not to lose sight of in all of this is that you are adequately anti coagulated. I would ask that they give you a supply of LMWH (Fragmin) to at least tide you over whilst everything calms down and you know what direction you are going in with this.

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The clopidogrel I tolerated well but it was not keeping the stable hence the introduction of the two aspirin.

The aspirin irritated my stomach even though it was gastric coated so the warfarin was introduced.

Haematology put me on 2mg of warfarin my INR at that time was 1.1

The following week my INR was only 1.2 so the dose was increased to 3mg. On wednesday haematolgy had me down as an emergency. Instead of taking the blood from my arm as before they did the finger prick immediate result test.

The nurse rang through to the hospital my result of 2.3. and my dose of warfarin was increased to 5mg.

As you are aware I am new to the INR readings and cant say I really understand it but do know it should be somewhere between 3 or 3.5 so I have a long way to go to reach this target.

I do not for one minute think I am suffering a water infection I believe it to be due to the sodium content.

I have inquired about fragmin but they are reluctant to prescribe it at this stage. I am not knowledgeable enough about the condition to question or educate my medics.

It seems to me they want to give cheapest option.


Hi Jillmo,

I agree with APsnotFab (who knows this illness so well), that you should ask for a supply of LMW (Fragmin) till you are in range.

As she says, the most important thing now, is that you are properly anticoagulated. If I think of, what I went through when starting Warfarin, I now know that I had a lot of micro-emboli as the Doctors were not aware of the fact that I was a "micro-clotter" at that time.



It is easier to train a dog old tricks than to educate some of these Drs and consultants.............If they do not understand the illness and complications they simply will not listen.

If you try to educate them of the condition they think you are dictating to them and know better than they. They didn't want to give me fragmin.

I shall be looking up micro-emboli. :-) I did have an ITA :-(

This is awful to think so many of us suffer due to ignorance.


I agree it is. It's even worse that we are forced to suffer whilst we educate and prove a point to the uneducated!! In your situation you may well have to talk tough, decide what path YOU want to take with your treatment and then insist that they prescribe it. Mentioning that you hold them responsible for any incidents or repercussions of their insisted treatment may be one option and certainly putting that in writing and pointing out you want it in your records would be a further step - one which will get someone's attention and hopefully a better result!!

The most important thing is that YOU stay in control of what's happening to you and that they are forced to follow NICE guidelines which is to discuss with you so that you decide together what is in your best medical interest - not be dictated to on the basis of a budget!

Let us know how things are going.


It was a haematology nurse that I was assessed by not a consultant. He kept on referring to my having thombophilia I dont know if our condition is sometimes referred to as this but I repeatedly told him I had antphosolipid syndrome.

I had very little confidence in the clinic. He didn't seem aware of the complications that can run along side of thinning my blood.

I am not frightened to speak out right or correct my medics. My trouble is my memory, fuzzy head and lack of knowledge to be able approach as you do.

I go to my appointments loaded with your approach and when I get there I sit in the waiting room and think to myself what was it she said. If you go armed with notes they either dont read them or it puts their back up.

I have Haematology nurse ringing me on Monday so i will be able to have a word then. I am feeling better than I did on Friday night although a little sore in my tummy.

If you remember I no longer attend Guys I asked to be seen by a local rheumy. His words were, we will leave your medication as it is for now and review you in 6mths. If you have any clots or blackening out of your vision in that time we will review your medication next time we see you. Aaaaaaaaaah what have I done ? I could kick myself that is when I should have said " if I have a clot or a tia in the next 6mths I shall hold you responsible ". Stupid me.

Had I have been well on that day I would have bitten his damned head off. You simply do not wait for patients to have clots and TIAs you prevent them from happening. His comments were the reason why I asked my Gp to refer me to a haematologist.


Having the tendency to clot is thrombophilia and the tendency to bleed is hemophilia. Sounds like a lot of frustration for you. Sorry to hear about that. My memory is quite bad too. Scares me sometimes.


Yes I have experienced that scared feeling especially when i'm disorientated and my balance is all over the place.

At least when we are going through such awful episodes we are amongst others who not only support but understand on here.

Take care. x


Hi Orygun66,

I know you have seen Dr Schoenfield (wrong spelling perhaps?) and I wonder if she had let you have an Ecocardiography with doppler as to your mitralvalve and pulmonary hypertension?

As I have understood it is very important that we are properly and high enough anticoagulated if we use Warfarin. How about you? What did this Specialist tell you about your HS/APS?

We must keep together as to our different symptoms. They are rare but rather common with hearvalve-issues when we have this illness.

Best wishes from Kerstin in Stockholm


Hi Kerstin,

Dr Schofield did order an echo for me when I first met with her. That was the first echo to show any issue with my mitral valve. She initially started me on Plavix, along with warfarin that I was already taking due to previous clots in my lungs, with the hope it might help with my migraines. But it did not. I have since had a heart attack and now take Brilinta, much like Plavix, and my migraines have improved. It's so interesting yet frustrating to try and explain this illness to doctors not quite as familiar with the details of it. I'm anemic for some reason and Dr. Schofield wants me to have colonoscopy and upper EGD done to look for any bleeding. The issue of what to do about stopping warfarin and Brilinta for the procedure came up in discussion between the gastroenterologist and I. This man just did not listen to me. All he could say was I had to stop Brilinta 10 days before the scope procedures and my cardiologist would want me on it for one year before stopping the drug completely. I repeated myself saying Dr Schofield wouldn't go for me being off Brilinta so long and she wants me on it indefinitely. Again, when he called me he said I needed to be off Brilinta 10 days and he would do the procedures after one year, when my cardiologist said I would be off the drug. The heart doc actually told me 6 months on it but what does it matter when this GI doc wouldn't listen to me at all. I just agreed with whatever he told me and promptly scheduled an appointment at University to see a different GI doc and hopefully a more competent one who can also listen to his patient.


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Good morning Lure,

May I ask what tests they carry out to diagnose micro-emboli ?

I wondered who Dr Schoenfield was when I received your message. It seems you have somehow answered orygun66 on my post so now reply's have become rather confusing.


Hi Jillmo,

I answered Orygun66 and put her name first so you should not be confused.

We can do so if we want to try to help someone only if we keep the "thread". We can learn a lot that way.

They can not carry out any tests as the micro-emboli or clots are so tiny that they are not seen on a Scan of today.

Most of the Specialists of HS/APS know these "micro-clots" exist with our illness. Often they get the answer when the patient responds very well on anticoagulation.

I was sent to a wellknown Professor at the Balance-clinic in Stockholm. He understood from my symptoms with the eye, ear and balance that I might very likely have micro-emboli as i also had all three antibodies positive. So he suggested I should start Warfarin which I did and "voila" it worked so well.



Hi Kerstin,

Like yourself I also suffer the ear, eye and balance problems.

I had a TIA in my left eye. For many years I had what felt like a fullness or blockage in my right ear so I attended the ENT dept for the problem. They didn't find an answer for the problem.

My antibodies are also positive. Please tell me what is "voila" this is something I have not heard of ?

It sounds as if your in good hands in regard to your treatment.


I can tell you I have difficulties with my Warfarin as most of us, but I have Specialists who listen.

I am from another country and I sometimes have difficulties to find the right words in your language.

I tried to find a word for what i wanted to say, but did not find it, so I took a french word as I also learnt French and German in school. "Voila" was used by my french "mother" the summers of 1964 and 1965 when I studied French in La Baule. It meant "it worked well". She also did a huge movement with her arms at the same time. I use that word here in Sweden sometimes as it says everything.



I am pleased to hear you have a specialist that listens so many do not.

In what way do you have trouble with the warfarin ? I am not sure it is agreeing with me so I shall be in touch with haematology this morning to see what can be done.

I had to laugh at your explanation of "viola" I thought you were referring to a medication you took along side your warfarin. :-) Silly me.

It's rather a pretty word for "it worked well". I only know of an instrument of which is a viola or the viola plant. I can picture your mother now doing huge gestures with her arms as she shouts "viola". I hope they were happy days for you.


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