side effects on warfarin?

[tipi]

My husband has terrible side effects on warfarin. Hair loss, bleeding eyes, mood swings, and now cysts all over his back. Is this normal?

The gp isn't interested and the hospital doesn't even reply.

[olleberj]

I have not had these problems and have been on Warfarin for nearly fifteen years. Is he taking any other medications?

[tipi in reply to olleberj]

No other medicationa at all.

This is really getting us both down, as we are usually out doing sports and cycling etc. The side effects are stopping all this

The first time he was given warfarin, in 2010, was due to an 'overdose' of a chemotherapy drug giving him a DVT. After 3 months it was stopped as the eye bleeds were so bad, and the DVT had totally gone. He hasn't taken any other drugs since, until this lot of warfarin.

[dutchess]

firstly i must say ..unbelievable , the GP is not interested , My thoughts are with your husband . But im in a similar boat with my GP . so frustrating , However i was on warfarin for 7 years and did not have any side effects of the medication xx

[Jade]

It certainly does not sound normal from my experience. I have taken it since 2004 and cannot think of any side effects.

Has your husband recently started warfarin or been using it awhile.? Bleeding eyes sounds very wrong, has he had his INR checked recently? He really should insist the GP take his concerns seriously especially any unusual bleeding as this is dangerous. Can he speak to his haematologist or anti coagulation clinic?

Has he started taking other medications or pain killers such as ibuprofen?

Don't leave this problem.

Let us know how he gets on. X

[tipi in reply to Jade]

He only takes warfarin. When given it in March 2010 he was only on it for 3 months as the eye bleeds etc were too bad to carry on. He was put back on it last year after catching some sort of virus that ended in lots of coughing and he was told he had a PE.

The side effects are even worse this time, but the GP isn't interested and the heamotologist we went to see just sort of pushed us out the door with out any explanations at all.

[tipi in reply to tipi]

His INR is checked roughly once a month...sometimes once a fortnight. It goes down mostly, so he's given a higher dose...goes back in 2 or 4 weeks (what-ever the clinic tells him)... its up a bit or 'normal' then 2/4 weeks later its right down again so he's given a higher dose.

[darceynjo]

Hi I started on Warfarin in Jan13 and was having terrible side effects eg. severe itching (mainly on the head) and hair loss. plus my INR levels woundnt keep in range. I spoke to my anti coagulation clinic and yesterday they changed me onto Sinthrome (Acenocoumarol) tabs. So I would urge him to speak to his clinic Julia x

[tipi in reply to darceynjo]

I'll certainly give it a go. Although when we asked about an alternative we were told that our health area doen't use anything else!

[Hidden]

I was on Warfarin following a DVT but had no side effects. That said, they couldn't get my INR in range so I was taking ever increasing amounts of meds and they eventually took the decision to take me off Warfarin for good. Strangely, they now want me off Heparin and back on the Warfarin!

[tipi in reply to Hidden]

I think you'll find warfarin is cheaper!

My husband is taking greater and greater amounts and can't get the 'range' right. Its OK for a week or so then drops dramatically.

The dose is increased, the moods get worse, the count goes up a bit then down again, so he's given even more and the moods get worse.....

[kaysie]

some people i was told by my gp can have an intolerance/reaction to warfarin and i was one of them, i ache like a 90 yr old and this was nothing to do with lupus/hughes, my moods became intolerable, i couldnt sleep, had bad anxiety, to name but a few, the fatigue and the muscles cramps were the worse, they took me off warfarin and put me back on clexane and strangely enough i was back to normal i hope yr husband finds some relief soon

[tipi in reply to kaysie]

Sounds just like his symptoms.

Thanks for sharing.x

[tipi]

Definately the warfarin. He doesn't take any other medication and it all started when given the warfarin, both in 2010 when he was taken off it and again last year.

Thanks for your concern x

[Stella]

sorry, I have only just read this thread. I am allergic to warfarin and have been prescribed either Sinthrome (as mentioned above) or Phenindione for the past four years, with no issues regarding cost. Surely, if you are allergic then they have a legal obligation to find you an alternative. My only problem is that both of these drugs seem to be in short supply from the manufacturer from time to time. I have an appointment at St Thomas's in a few weeks time and will be raising the issue of availability and alternatives then. Will let you know outcome. Also, you don't say what his target INR range is.Stella

[tipi in reply to Stella]

Target INR 2.5. Fluctuates from 1.1 to over 3. Thanks.

[darceynjo in reply to Stella]

Hi Stella, when the hospital gave me the script for Sinthrome we found out it wasnt available at the hospital so my daughter had to go to the other side of our city (sheffield) to get it from that hospital, then yesterday I was told in our local chemist that this drug is in very short supply and its on a 1st come 1st served basis. So whats the point of giving you a life saving drug if you cant get hold of it ???????????? Julia xxx

[Stella]

yes,it's an ongoing problem. I had same problem with phenindione. My GP does not seem to think that there is an alternative to these two if supplies d dry up. I have about six weeks supply at the moment. My appointment at St Thomas's is on 28 March so I will talk to them about it then and put a post up to let you know what they say. It's certainly a bit of a worry. Stella

[darceynjo in reply to Stella]

Why put you on these drugs if there is a shortage of them, my doctors wont give me a repeat script until a few days before I am due to run out, as this is the 1st time taking these I am worried in case I cant get them when needed xx

[DataOdyssey]

I've been on Warfarin since about 2004. My target is 3.00, range is 2.5 to 3.5.

Side effects? Yes. Hair loss - believe it or not but I used to have a large pony tail. There's no baldness in my family, but 3 years ago, following an increase in my dosage, my hairline started to recede alarmingly - in large bald patches. So I shaved all my hair off. Bleeding eyes? No. In fact 3 weeks ago, alarmingly, for an unspecified reason, my INR went up to 6.5. Still no bleeding eyes or nose, but then I'm not allergic to Warfarin. Tipi, he might need to switch to using something else. Take care x

[noodlesrita123]

Hi it sounds like your husband might be allergic to it. I get regular nose bleeds but that's it. It may also be something he's eating counteracting with the warafrin. Hope he gets this sorted very worrying take care xxx