My inr is on target of 3 for the firs... - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,397 members10,601 posts

My inr is on target of 3 for the first time but I have had bad headaches for a week. It

16 Replies

It feels like my head is being squeezed and i feel dizzy and Sometimes nauseous. I was 2.9 for a while and felt good so Im not sure that it is anytime to do with inr. Gp thinks its just sugar/caffeine withdrawral as I am eating better and have stopped chocolate,sweets etc. Anyone got any advice.

16 Replies
Manofmendip profile image
Manofmendip

Hi Lewchar

We have discussed these issues before and I remain of the opinion that you must be seen by a consultant fully familiar with APS.

When I was on Warfarin I would be suffering with severe symptoms with and INR of 3.0, my target was 4.0. These symptoms included: Migraine dizziness, numbness, brain fog, memory loss, nausea and more.

As you live so close to the London Lupus Centre if I were you would really try to get an appointment to see one of Prof Hughes team. They may suggest gradually pushing up your INR until you found a point where symptomatic relief happened; I found that this certainly happened almost like breaking through a barrier, above that figure I felt well, below it I felt ill. Or they may give you a trial of Fragmin for a few weeks.

If seeing someone privately at the London Lupus Centre is not financially possible for you then have a look at the list of APS familiar consultants of hughes-syndrome.org and insist that your GP refers you to one near you on the NHS; you are entitled to this under the NHS 'Choose and Book' scheme.

Good luck and let us know how you are getting on.

Dave

in reply to Manofmendip

Thanks for your reply. I am waiting for an appointment to see one of the consultants on the Hughes website. He is an NHS doctor at st Georges but also is private at London lupus so hopefully I get all the answers I need. Just so fed up of these headaches I can't function properly and paracetomol doesn't do anything.

Manofmendip profile image
Manofmendip in reply to

That's good.

I can understand how you feel, as I did too, before I was properly anticoagulated to the correct INR target for me. I think that they should consider pushing your INR up until you feel the symptoms are getting better. Or they should put you on a Fragmin trial.

Dave

in reply to Manofmendip

I would prefer fragmin as have done them before. Hope my appointment comes soon. Xx

Manofmendip profile image
Manofmendip in reply to

I am on Fragmin and I feel much better on it than on Warfarin and it's much less hassle. xx

in reply to Manofmendip

That's great. I feel worse now than when I started the warfarin and I've put on so much weight which I can only put down to the warfarin. Ill see what consultant says. Thanks for your replies xx

Manofmendip profile image
Manofmendip in reply to

You are most welcome. xx

MaryF profile image
MaryFAdministrator in reply to

Hi, I doubt the Warfarin would make you gain weight, please be aware, if you look at my previous posts that A) Thyroid problems are a real possibility with Hughes/APS and also the tests are pretty unreliable. Regarding withdrawal from sugar and Caffeine your GP is quite correct about this, it can be the case. Best of luck and glad you are about to see the right sort of specialist.

MaryF

in reply to MaryF

I have had thyroid tests but they have come back clear. But I have read your posts about this and was going to mention it when I see she consultant xx

Lure2 profile image
Lure2

Hi, I am on warfarin. I agree with Mary that it can not be the warfarin causing you gain weight.

I would be interested to know why you stoped the Fragmin and started warfarin?

I also think you are too low in INR and not stable. The headache can perhaps be caused by the change in suger also. Both things perhaps.

Best wishes from Kerstin in Stockholm

in reply to Lure2

I was on fragmin when I was pregnant in 2003. After that I was told that I didn't need anything as I only had a problem when I was pregnant. Then at start of this year I became unwell and gp referred me to see haematologist and put me on warfarin.

GinaD profile image
GinaD

I totally agree with Dave. And I am glad to read you will be seeing a doc who should have APS experience.

Headache, brain fog, fatigue, weight gain- it is impossible to control in one's life which symptom can be caused by what issue. Yes, caffine withdrawal leads to head aches. As does a sharp reduction in high glycemic foods. But us APS sufferers can present with such a hodge podge of symptoms that it takes an experienced eye to sort out which symptoms group together as APS-under-coagulation, which are grouped in the associated diseases, such as thyroid, lupus. sjorgrens and which can be due to stray viruses, or diet and behavior mistakes.

Good luck. Let us know how it goes.

Lure2 profile image
Lure2

I understand why you changed to warfarin. If you have tried it and was well on it. Sounds good.

I myself am a little unsure to stay on warfarin. I have heard Dave talking so well about Fragmin. I am tripplepositive and my values have to be well controlled (I have a selftestmachine). If my Hematologist will not accept that my INR shall stay higher (specially when I am in hospital and they do not understand how sensitive I am on changes in warfarin) I may ask to change to Fragmin.

Gina is right about so many things involved but I have never heard of warfarin and weight gain. Glad you get an APS-doctor!!

Best wishes from Kerstin in Stockholm

Lure2 profile image
Lure2 in reply to Lure2

I mean it you have tried it before and was well on Fragmin. That sounds good. (I did not mean warfarin.)

Kerstin

Leenalina profile image
Leenalina

I think weight gain is consequence of being fatigued and so on if you are not able to do exercise. All those symptoms you have makes normal life difficult. But also thyroid problems cause weight gain as Mary says. My blood results looked in normal range, but I needed to find a doctor who listened the symptoms and gave Thyrosin trial, and it helped the symptoms.

in reply to Leenalina

Thanks its good to no all these things. I can put them on my list of questions for consultant them I can rule things out xx

Not what you're looking for?

You may also like...

I had stroke in 2007, always having headaches is normal? i have hughes Syndrom, my inr is usually 3.6 - 3.9 is to lower? it is normal or not

I take plaquenel 200mg, rampril, none of doctors has answer, it could my scar tissue of my stroke...

The last five weeks have been a little hairy but it is not all bad news.

A few weeks back, I was started on a very very low dose trial of 'Plaquenil'. i was full of hope...

I have been struggling to stabilise my inr for months now. I feel so awful most of the time. I enquired

about trying fragmin injections but was told I couldn't use them as they can cause osteoporosis. I...

Hello I shall be on here some of the time but with a few gaps!

Hi everybody, I shall be on here over the next two weeks probably here and there, probably when...

What is the average time it takes for Warfarin to have any effect?

Whilst attempting to correct her INR's, my daughter says it takes three days for the dose given...