Hi all, only just found this Forum, excellent stuff when you are feeling a little lost....
I suppose I am a recent conscript to the 'World of Hughes Syndrome' it being just over 2 years from copping a DVT and PE and I am still coming to terms with the consequential side of APS.
Had a rough run or so I thought going onto Warfarin, I thought it was making me feel really rotten and my INR was jumping all over the place and took an age to settle, was a Heparin dartboard for weeks and weeks but eventually it settled down and did the first 6 months sentence.
This was followed by a 1 month break to clear the Warfarin so they could do further tests and it was confirmed that I had again signs of Lupus Inhibitor being present and that I had a predisposition to form blood clots.
Now this was very confusing at this time.. you are wondering why you have gone all clotty and medical people are banding the Lupus word around which all you can read up on is fairly worrying whilst using big long words like Antiphospholipid and telling you that you are going to be on Warfarin for life.
As good as the Chest then Haematology dept were in treating it all they were not very good at actually explaining why or what the full implications could be, guess they do not know mainly.... well not in a simple 'it makes sense' way anyway
When I went back to Docs my usual GP almost 'scoffed' at it all with a 'well I suppose they think they have found something'!... I AM still considering changing GP btw!
So the weeks go by and my INR is playing up and I need to see a Doc to check the dosage with my condescending GP out and me waiting for nearly an hour another steps in and as i walk in he goes 'Oh you have Hughes'.. I HAD NEVER HEARD IT CALLED THIS BEFORE! Months and months had passed.. It was a revelation to go home and read all the excellent stuff on Hughes Syndrome Foundations site.
So I settled in to the long run, a few blood tests, Warfarin for life and my days of Chainsaw Juggling over.
One positive is I don't seem to get migraines like I used to, hell they would knock me over, I even had to pull off the motorway a few times to sleep an attack off as they almost blinded.
But slowly I have started to realise the consequential symptoms that seem to hit in little phases are possibly not the Warfarin, the morning nausea maybe, but it dawns more and more the lethargy, the joint aches and stiffness, when words do not come out properly and the brain fog, you forget the..........
There have been moments when it felt like I had ME and Dementia all rolled up as one as icing on the clotty cake and I had a few dark days worrying about it all.
Well until I realised that it's just part of it and fortunately when I went to see the Haematologist for the 2 yr review and told him how I felt he did some additional tests and it turns out I am Folic Acid Anaemic and he referred me to St Thomas' Hospital APS Clinic which I did last week..
More bloods taken more tests to check to be certain, maybe a change of tack if needed BUT more importantly I feel like I am taking control at last, maybe nowt can be done, maybe things can be tweaked, will have to wait and see.
So here I am still feeling grotty and struggling some days like today then bouncing on others...
but at least I will know that what is will be the best I can expect.
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CheddarAddict
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Your story sounds very similar to mine. I was diagnosed in 2002 and put on Warfarin, after a trial of Fragmin. This stopped my migraines for 7 years but then they came back and I was given Amitriptyline as well as Warfarin and they stopped the migraines again.
I then started to get momentary dizzy spells, with lingering, migraine like after effects and I went back to see Prof Hughes. He moved me back onto Fragmin from Warfarin and also sent me to a colleague called Peter Savundra, an Audiovestibular consultant.
Hi, I am from West Sussex, to be honest it was maybe 18 months in before it suddenly dawned on the Migraines, no one mentioned it at time, was only later that I thought of the positive of them not there.
Will see how the next few weeks go, Whirly Machine Ride and see what results say...
EDIT:
I feel its starting to really affect work which is the worrying thing, I know I am not firing on all cylinders, maybe I won't ever again.. who knows.. just want to be as good as can be.
Hi and welcome, glad you have joined up the dots and made it on to here. I am also originally from West Suffolk, although after a long spell in London I am now out East. You will find a wealth of information and support on here, both from reading the charity pages and this forum. MaryF
Your experience sounds very similar to mine, I had an unprovoked massive PE about 3.5 years ago. I am on warfarin for life following an Antiphospholipid diagnosis and while I don't get migraine and never have, I do get a cycle of 3-4 weeks feeling "normal" ish followed by a few weeks feeling very exhausted for no apparent reason regardless of sleep/rest which does produce the "brain fog". I've repeatedly mentioned this to numerous doc's (incl St Thomas's) but no one seems that interested as blood tests haven't revealed a cause, so I guess I will just have to suck it up. The problem as you are discovering is the very compartmentalized nature of the medical "establishment" and the fact that sufferers often tend to mostly appear "normal" means that APS treatment seems to fall between the cracks, other than the anticoag regime. I've had a few vision problems (retinopathy -can't tell if related to APS but I suspect so) and dull aches down my right side that often come and go. The only thing I've found that really helps both mentally and physically is regular exercise. Work does get affected, I also have weeks when I'm not firing on all cylinders. Anyhow not that this helps other than knowing that you aren't on your own!
Are you still on an INR between 2.0 - 3.0? We have too sticky blood and we have to be enough anticoagulated to feel OK.
I think (as you live in England) you should see an APS-specialist who can remit you to the Specialists I think you need. (I have here in Sweden an APS-specialist that remits me to the Specialists I need with my APS.)
APsnotFab did suggest something. She knows this illness very well so listen to her.
Yes I'm anticoagulated, checked regularly locally & usually in mid range. Part of the aching may be scar tissue from the PE as I had a follow up CT last year that still showed scarring. I see the team at St Thomas's 6 monthly. Probably should book to see prof Hughes but it goes against the grain having to do so privately! When I first visited St Thomas's it was better but the last couple of trips I've seen random doctors and it seemed like a superficial 10 min chat which was disappointing.
Mike. Much of what you have written has the sense of deja-vu about it, only it was 40 odd years ago for me. I now see warfarin for life in a different sense, as a life giver. For nearly thirty years I only heard about having Lupus antigoagulant - it was great relief to hear about Hughes and look everything up- and realise I wasn't a hypochondriac , just a typical Hughes male with Hughes symptons (which still are seldom described in full in much of the literature)
As for Cheddar Addict, I guess a new GP is on the cards. When you get a good one, hang on to them.
Hallo and welcome! I have APS and all the antibodies there are in high titres and am on warfarin since more than 2 years now.
I wonder if you have "Control" of your INR? APS has to be enough anticoagulated. Are you stable in INR? Have you tried selftesting?
I agree that exercise is most important. I try to exercise every day. I have had a lot of visionproblems before I started warfarin.
And also regarding your PE ........ do you have your bloodpressure under Control? That is important especially when you are on warfarin.
This is what I came to think of when I read your Post.
Also change your GP (as you mentioned you will perhaps do) if he do not understand this illness. So very few doctors do and it is important to have a doctor that can remit us to the Specialists we need.
With the right anticoagulation and the right APS-specialist you must be able to live a normal life. Never give up on that!!
A lot of good books of APS are available for sale on Hughes Syndrome Foundation charity website;
I prefer "Sticky Blood Explained" by Kay Thackray. She has APS herself and it is a very good book.
Yes INR is well controlled and BP was normal on two recent visits to my GP (I'm on mild meds for it) although when I feel "off" it does feel like high BP feels. It's a mystery!
My answer was meant for CheddarAddict. You are a bit "similar" as you say yourself. Most important is that you feel ok. We try to help eachother as much as we can.
Thanks for the replies, reading bits on here makes you realise that you are not losing the plot and that potentially with the right treatment and a dash of luck things will improve.... or not but at least you know it.
Kerstin, I am on a target 2.5 INR at mo, and from researching what I have so far this may need to increase.
I am very fortunate that from my first rushed visit to doctors with the PE I saw one of the other GPs in the Practice who sent me straight to A & E who were brilliant, on a bed and monitor in minutes, Scanned within hours and seen by Chest Dept, in bed on ward in around 2.5 hrs! Chest Dept very good and saw out treatment then passed me on to Haematology Dept after 3 months. Again Docs here good and the most recent appointment at 2 yr review saw me referred to St Thomas's so will see how this goes.
I am optimistic that with the best Docs now on it I will get the best from treatment.
The INR tests are done with a Practice Nurse so I haven't actually spoken to the GP other than to amend Warfarin dose. I will be changing the GP when I need to.....
EDIT: Not once has my BP been highlighted as an issue, almost to the point that it is quite novel to have it done now and again.
My (very good) GP, who has learned a great deal about Hughes by having me on her list, says two of her priorities are keeping me free of clots and maintaining the right BP - which sounded good to me.
I also thoroughly agree with Kerstin's three points below. For me, self-testing is an absolute necessity- though I recognise it does not suit all- and through it, the ability to know when Fragmin injections are required as a matter of urgency.
When I have an INR below 3.0 (it may go down to 2.5 perhaps but not more) I have to inject Fragmin. Most of us need to have an INR of at least 3.0 - 3.5 to feel good and some of us over that figure.
3 thíngs are important if you have had your diagnose (which in itself is positive);
1. Get an APS-specialist that can understand how to refer to the different doctors you may have to see.
2. Get as much info about this illness as possible.
3. Try to get your own testing-machine so you know you are in range (if you are on warfarin). See to it that you are enough anticoagulated with a higher INR then you have now.
Hi..i have read your post with interest..noting the headaches and pain especially..could I ask about your diet?..is there anything you avoid/sets it off etc..regards..Tony
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