Inr all over the place on warfrin for... - Hughes Syndrome A...
Inr all over the place on warfrin for aps resulting in vertigo symptoms. R there any other meds to help this??? Im struggling alot with this
Hi, firstly do you have APS/Hughes Syndrome and secondly you need to engage with the specialist who is managing your Warfarin, yes there are alternatives but that is between you and them. Others on here have been swapped over onto alternatives, but we cant' give out medical advice. Do keep a list of your symptoms in order to help at your next urgent clinic appointment. MaryF
Thank u mary for your help!! I do have Aps and have been on warfrin for a few month now. Both the nurse and myself r loosing hope in keeping my inr stable so i rang my doc today to c if he has any ideas. My inr just doesnt seem to reflect the doss i am taking..and im having it tested every 3 days so i thought there would b abit of a pattern by now but no!!! I just wondered if there was an option of a change of meds to help. I am doing the diary so hope that will help...thanks again for ypur help
Hi, I am glad you have close links with the nurse and GP that is good to hear that, have they given you clear dietary guidelines and checked for anything else going on, and have you been referred to an APS/Hughes Syndrome specialist, there is a list on here or on the charity website.
Come back to us if we can be of further help. MaryF
Thank u mary. I am under dr harsha gunawardena who is a consultant rheumatologist at southmead hospital in bristol. I have left the msg with him so im hoping he will get back to me. I will ask about the info on diet thank u for that. I am in regular phone contact with the warfrin lab when i have my inr done but together we r struggling to dose me correct as it seems to b all over the place. Thanks again
Ok, that is good news, of course virus and other issues such as antibiotics can cause a problem, but please read this also: hughes-syndrome.org/resourc...
MaryF
Ok i will do thank u. I do feel well apart from the dizzeness...i am taking hayfever meds which my gp said is fine but could this b a problem?? I am starting to look for reasons as im desperate to feel better
Hi gemgemz, who is managing your APS care?
Dave
Hi dave. Thank u again for your comments/help. I am under dr harsha gunawardena at southmead hospital. Thats great to know that the other meds reduced your dizzyness....this gives me some hope as mine was starting to fizz out and thats not like me as im usually a very possitive person. Thanks again
I think you should try to get a referral to the RNHRD in Bath, it's not far from you in Bristol.
You could ask them to give you a trial of Fragmin, instead of Warfarin. I am much better on Fragmin and it has reduced my dizzy spells dramatically.
Dave
Dave: Do you inject this form of Heparin or is it in tablet form like Coumadin? My hematologist is already pushing me to go off Coumadin and onto one of the newer anti-coagulants. He can't give a reason why he is pushing for this change. My INR stays within an acceptable range, albeit a low one.
Best,
Danny
Danny. Fragmin is injected into the tummy fat - plenty of that with me - once a day. As I understand the new oral Heparins are not licensed for APS treatment yet. Best Dave
The first week after my pulmonary embolism they had me self inject an anti-coagulant. Heparin maybe? It left HORRIBLE bruises on my tummy.
That is one downside but better that than the symptoms and consequences of APS and the inconsistency of anti-coagulation and bleeding risk of Warfarn.
Hi there
So sorry you are having these problems
What is your target INR? Many of us are never stable, although that probably doesn't cheer you up! My consultant agrees that your INR will always be changing, so in some ways best to not check too often.
I think you should give the warfarin a bit longer. Maybe your INR needs to be set higher? I know when I drop below 4 my symptoms return. Glad your nurse is sympathetic. Remember, too, a change of dose can take up to 72 hours to take effect. As to the hayfever tablets, different people have different reactions. If you can survive, I might be tempted to stop it and see what happens. But we are not medical, so be guided by your drs, and don't take this as medical advice.
Good luck with it all!
Blessings Ann
Hi Ann thank u for taking the time to comment. My target inr is 3 and i thought that my bad days were when it fell below this but i had a gd day last wk and had my inr test that day and it was 2.6. I seem to have no pattern and seem to b having days where its bad in the middle of the day and then i feel better atound 4.00 which does not make sence as yesterday my inr was 4.2. Maybe my dose is being changed to often but i have been worried that it will full to much and as i had a stroke the team at the clinic r abit worried to let this happen...i hope this makes sence and thanks again its great to talk to people who understand 
Hi
I really would ask for a trial of Fragmin and see if you feel better on that, I do and would never go back onto Warfarin now, despite the CCG putting pressure on my GP to switch me back to save money.
In respect of the dizzy spells, Prof Hughes sent me to his colleague Peter Savundra, who is an expert on ears. Peter, who is a very wonderful and approachable doctor, like Prof Hughes, explained in minute detail how us with APS have issues with our blood not getting through the very tiny arteries in our ears, which are only 0.1mm in diameter and this causes the dizzy spells.
I hope you can come to our next APS South West meeting in Bath on 1st October.
Dave
Wow that sounds like u got a gd understanding of what is happening to u and that is great for me to hear as i feel abit lost with the whole thing. Its been abit of a rollercoaster for me as i went from a fit healthy women to being hit by this after a stroke after having my baby. My doc did ring a few wks ago to ask if its ok to refer me to the guys hospital in london and of course i said yes...is this where the doc u saw about your ears is?? Thank u for the info on the other drug i will mention it to him when he gets back to me. I would love to attend ypur meeting but im due to start back at work in sept so i willb working on a wed. Is there anyway i can see any mintes or get some info from these meetings or is it something u need to go to to access it. Thanks again for your time
Hi gemgemz
Peter Savundra is at The Portland Hospital in London and I saw him as a private patient; well worth the money.
I could well be worth you seeing Prof Hughes as a private patient at the London Lupus Clinic, London Bridge Hospital, to get his support for a trial of Fragmin. He put me on it and now my GP and the RNHRD in bath both support me in this.
I can send you minutes of our APS South West meetings. Send me a private message with your email address and I will get my colleague Daniella to add you to our email circulation group.
Best wishes.
Dave x
Thank u dave i will keep this in mind to get the private appointments..i will c who it is i am seeing in london first as i may have the hospital wrong as i am rubbish with names great ill send u my email. I really appreciate your help
Were you having dizziness before starting on Warfarin.
I am on betahistine as I was have dizzy spells but that was before I started on Warfarin
Hi thank u for your comment. I was having these vertigo symptoms after having my little boy and kept going back to the doc. Anyone making a long story short i had an emergency mri which showed i had experienced a stroke so i was admitted and eventually they diagnosed aps. I was then put on warfrin which has stopped the sight loss and room spinning episodes i had but the unsteady feeling and dizzyness is still with me. I do have one in a blue moon gd days but these dont happen often. Thanks again
Hi, I have had those loss of sight on one eye and the room spinning (call it Vertigo) and also other neurological symptoms. After warfarin i could see again without doubleseeing etc and Vertigo disappeared. The "feeling drunk" and unsteadiness will never go away. I had a damage to my innerear with my TIA/stroke.
You can not feel like before but you can see and live a good Life.
Best wishes to you from Kerstin in Stockholm
Thank u for your comment. Do u have days where u feel.fine and the drunk feeling is gone...i do have these days, not very often but they do happen. Im thinking if my inber ear was effected by my stroke then my many mri scans would of shown this...im not sure this is right. Im sorry to hear about your ears being damaged but it siunds like u have a gd possitive outlook on life which is great Thank u!!!!!
MRI do not Always show TIAs . The ear/balanceclinic in Stockholm showed the damage to my innerear. Later on. I have been told by a professor that I have probably´had microclots.that caused my vertigo also. Very difficult things.
Everything gone with warfarin now. I do not feel very drunk! Just a little as I am so used to it now. Sometimes when I am tired it get worse. And if my warfarin is too low or too high. When it is too high I get a bit of headache. It can depend of the weather also.
If you want to stay on warfarin you must wait to understand how it works. it took at least 2 months before all my neurological symptoms had left for good. I still can have Auras.
We are so lucky that we can selftest here in Sweden. If you have the possibility to do that I think you shall try. Soon there will be a new anticoagulantdrug but i doubt if I will try it as I have problems with leaking heartvalves and warfarin is still a safe drug for such problems.
Wish you luck! Kerstin
If you have access to uTube, you can find lectures/talks from the APS Patients Day held annually at St Thomas Hospital in London. Yesterday I read " chapterized 3" ( search APS Patients Day 2014) which included a clarifying explanation of how APS is treated now, with hopes as to future options for treatment. I highly recommend giving that one a watch. The more we know the easier it is to adapt, cope and hope! and this will arm you with more info about how and why other treatments may work.
( as the English lit graduate of Vanderbilt Uni, I often wonder to myself if the average doctor could write a B or A level essay in an advanced lit class. Most of them are no good with succinct explanations.)
Gina
Just a thought hard for me as the APS has affected my brain. I no longer get the dizziness but over the last year.or before became clumsy knocking this over, tripping up, not being able to walk in a straight line, falling
It was suggested by st Thomas that I see a neurologist there as well, yes their is actually one how believes.
Anyway it was decided between them that I should start on Hydroxychloroquine within 2 days I noticed the difference, maybe an idea for you, I am still on Warfarin memory hasn't really improved but the balance thing is great
Hi daisyd, Do you have Lupus also? I know you are selftesting. We can be lucky to selftest It is hard to argue for warfarin when so few in England are selftesting and do the bloodtests so seldom. at the lab. Soon they will start a new anticoagulating drug but as I have hartvalveregurgitation they want me to reamain on warfarin.no doubt.
Take care
Kerstin
Hi Kirstin I have mitral valve regurgitation as well. I was told I had Lupus once I keep meaning to look up my blood results but haven't found the energy yet.
Hi Daisy, I must be tired to day. I meant to sent that comment to you. Today I thought I have lost my wallet and phoned my bank to stop my mastercard. First time in my Life. Later (10 minutes) I found it in a pocket to another jacket as i had intended to go out that jacket because it was not raining any more..I had also my driving license in the wallet. I am going to my heartdoctor tomorrow. Kerstin
Never mind daisyd. You got the comment. I can also have Lupus perhaps. It is difficult to diagnose.
Take care.
Kerstin
