Hi everyone, just wanted you all to know that I think this site is really helpful and I think I would have gone insane with all the odd symptoms I have been having if I had not been able to read all the variety of different symptoms people seem to get with this condition, I should add that mine are quite mild in comparison and I think there are some really brave people on this site who have been a great inspiration to me, especially on the 'bad days'.
I have been reading the blogs quite often since I had a small stroke last September aged only 52, I have been on clopidogrel ever since and I have been having blood tests done ever since to see if I have the Hughes syndrome.
Last week I was sent to the hospital by my GP because I had the same symptoms of my stroke from the previous year, a strange felling in my head not quite a headache and speech issues with numbness down my left side. I was sent for a MRI but it showed no evidence of a stroke, they informed my rumi and stroke consultant who are at the same hospital (luckily) who came on ward to see me, they have now diagnosed me with the 'Hughes syndrome' and possible connective tissue issues and have put be on the warfarine medication, after taking it for 5 days my IRN is still only 1.1 and they say they are aiming for a 2.5, does anyone know how long this is likely to take as I was hoping my stroke like symptoms would start to disappear and as yet they haven't
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sharon58
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When I first went on wafarin It took a week of high dosage to get my INR up to target 3.5 range of 3-4 but I would say it took a couple of months on warfarin until the fog/headache lifted mine didnt go completly but is manageable
Whilst I luckily did not have a stroke - my sympthoms before I was diagnosed were exactly the same as the above, the numbness in the face, slurring of the words, headaches, forgetfullness - I was on Heprin now on Warfrin 6mgs. twice a week and 5 for the remainder of the week - INR is now up to 2.3 but its a long time getting there I too was as 0.1 when they started me off on it first in hospital.
But I think you get peace of mind from a group like this that all that you are experiencing is very frightening but when others are going through the same thing it makes it easier to understand.
Hi Sharon, I believe at least 3 days, but it will take a while of adjusting your warfarin to get you to your therapeutic level. You will find you INR goes up and down, is changeable by the many different things, ie diet, spinach and foods high in vit K can and probably will affect your INR, stress, smoking, alcohol too. Having said all that, you will be monitored regularly, by either you GP or local hospital and have your warfarin adjusted accordingly. MY INR target is 3 - 4 and often goes up and down. I take 8 mg to keep me about right, but it also differs from person to person. - Some people say when their INR is higher so the brain fog many of us suffer gets better, again not for all. At least you have your dx, and they are looking after you, keep well.
Thank you so so much for all your replies, I now have a better insite on what and how long it will take for my IRN to reach the required levels, and hopefully as you all describe the 'brain fog' will get better soon
Welcome and glad you are finding this site so helpful, I think it's a lifeline for so many of us!
Your inr may tike a while to reach target range, and may well be unstable on and off. The symptoms you describe are very familiar to a lot of us on here.
Brain fog drives me crackers but does improve when inr is higher.
Thank goodness you have a clear diagnosis and are being treated, I hope you start to feel better soon.
Your question was very interesting to me. I dont know if you read the question i put on the forum on 5th May - Can lupus APS mimic a stroke? your symptoms were like mine, a pain in my head, weakness in my left arm and my speech disappeared. The neuro doc said the mri showed no stroke and it was a malfunction in my brain!
Yesterday pm the pain in my head went and my speech came back for the first time in 2 1/2 weeks! I was talking normally, even in sentences.
Then last night I got the pain again and this morning couldn't speak again, though its gradually improved in the last couple of hours but is rather weak! Were your speech problems like this?
I've been in warfarin for 11 years ! What dosage have you been started at? is your INR being checked each day?
Glad you found the site, its great to compare symptoms and get advice from people who really do know what they're talking about!
Hi Jane, yes we seem to have the same symptoms although I was told they didn't know what is causing it makes you think sometimes they don't believe you, it was only because my blood pressure went up really high for 3 days that they were concerned, I asked if the warfarin would make these issues go away and the stroke consultant said he wasn't sure??
I am taking 4mg a day and having it checked once a week, at the moment my INR is 1.1 i am hoping to feel better once it goes up.
You may need a higher dose. My INR needs to be between 3 and 4 and I take 10mg.
I've had to drop down to 8mg at the moment as the medication I'm on keeps making my INR go over 5. Everyone is different though. When I first went on warfarin years ago, I had to stay in hospital so it could be monitored. Seems as though things have changed now.
I don't think one of the neuro docs believed me! He held up his pen and asked me what it was. I knew but just could not say pen!!!
Hope you soon get sorted with the warfarin, but it probably will take time.
It can take a while for INR levels to rise when starting Warfarin and it is important to have a few days of high doses to get yourself 'loaded' with it.
I see that the are trying to get you to a target of 2.5 but that is low for a theraputic level in APS patients. You may find that you are still getting symptoms at 2.5 and you should discuss gradually raising your INR until you feel that your symptoms have reduced to a tollerable level. Many of us on here have a target INR between 3.5 & 4.0.
If you are in the UK you could ask to be referred to St. Thomas's or you could book a private consultation with prof Hughes at The London Lupus Centre, London Bridge Hospital.
Hi Dave it does seem to be that my doctors have set my INR level to a low target, I will wait and see how much it goes up over the next couple of weeks then mention about the advice I have been given my you all.
Bless you, at least u have a diagnosis and reason for it all now.I’m no doctor but having read extensively I think a target INR of 2.5 is way too low. That is the target of patients with AF or post stroke without APS. We shouldn’t be treated the same!
It is well known that our INR has to be higher; most have targets of 3 or 3.5 or 4. A few even higher.
I had a target of 4. When I was 3 or below I had to inject clexane/heparin. I was ill with deep aches all over my body that made it hard to get out of bed along with terrible headaches/migraines that were much better once my INR was at 4 again.
If u are like me and many others with APS you will not feel better until your blood is thinner and you will still be at risk until then, many haematologists find this hard to understand.
Have u read ‘Sticky Blood’ by Kay Thackeray ? It’s a great starting book. I’m sure others here can recommend other books too.
Maybe go on a fact finding mission then see the haematologist again. Most are scared of thin blood but Prof. Hughes says: “APS is a clotting disorder not a bleeding disorder!” In other words they shouldn’t be afraid of prescribing us more Warfarin.
I printed some Q&A off here along with blogs from the profs and gave them to my consultants. Good luck and let us know how u r doing 💋
I also forgot to say that u can eat vit K - in fact u need it to make the warfarin work but u MUST eat the same amount each day. So u have to work that out. Don’t avoid it altogether or everything will go haywire! A mistake many make.
Also don’t worry about the dose u take so long as u follow instructions. I was taking 20mg for ages and still struggled to reach my target. I was in St Thomas for 10 days. They monitored my food and stood over me while I took my meds. They tested every day and couldn’t believe that taking 20mg daily I struggled to reach 3 when my target was 4.
So don’t be fixated on the amount of warfarin u take, it is very much an individual thing. Fixate on the INR reading.
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Sticky Blood
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