My daughter has APS & Sjorgren's, and, although the GP happily tells us her thyroid is 'normal', Prof Hughes is not convinced! She has had no documented thrombotic events, but presents with the usual migraines, brain fog, neuralgia, etc.
She has tried asprin and Plavix, but they did not help so she undertook a heparin trial earlier this year. Within days we noticed a huge improvement, although the effects wore off dramatically after 5-6 hours. Prof Hughes agreed that she should move onto a more effective medication but was reluctant to keep her on the Heparin because of the injecting, so she has been on Pradaxa for 2 weeks now.
I have to admit I am alarmed by some of the things I have read about the drug, but our main concern is that she seems to be having little benefit - slurring, mixed up words, migraines etc are all now becoming more frequent. I know that some meds suit some people and not others but, before we give up and ask for a rethink, I wondered if anyone else who is on or has tried Pradax could let me know how quickly they noticed any benefits.
Thanks as ever for reading this
best wishes,
Fiona
Written by
floss112
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I think that you should phone the London Lupus Centre and speak to Prof Hughes about this and she might be better, perhaps, going back onto Fragmin shots.
I have found that, for me, the dose of Fragmin needs to be the correct therapeutic dose for my body weight (i.e. for me at 81kg 15,000IU). I have found this to be very important to ensure that the effects last for a full 24 hours.
Thanks, Manofmendip - you've steered me in the right direction in the past and once again I think you are right. I wasn't aware we could speak to the Prof - was thinking I would have to wait until our next appointment but will call the centre. He was happy for us to give the Pradax a go, but if it is not as good for her as the fragmin...... - and I am certainly not happy reading more about the fact that the anti-coagulant effects are irreversible unless I can guarantee she spends her time sitting on the sofa wrapped in cotton wool!!! I will let you know how we get on. Thanks again.
Thanks for your replies - I rang the London clinic and Prof Hughes is away this week but they told me to ring on Monday morning. Thank you - sounds silly but I wouldn't have thought to ring without your nudges. She is happy to go back to the fragmin if we can get it to last... Or warfarin if it is more stable....
Am always so grateful to you folks on the site - whilst it's been a rough few years chasing answers, and maybe I hoped she'd have an easier ride at the tender age of 21, it really was through you all that we found the right path... And now she's at uni, getting a 1st and off to Barcelona for a year.... It's amazing!!!! Thank you xxxx
Hi, I have been on Warfarin for over 30years and only found out a couple of weeks ago, from this forum that it causes calcification. I then received a letter from the hospital telling me that I need further tests, because my ct scan shows calcification of my heart. I am going to ask specialist to put me on fragmin.
Hope you do not mind me asking some questions because I take warfarin and have APS also;
How long time since you started warfarin over 30 years ago have you known that you have a diagnose of APS?
Have you avoided eating K-vit rich vegetables during this time to keep the INR stable?
Do you like me take Calcium and D-vitamins prescribed by an APS-doctor?
Have you been taking extra vitamin K2?
How old are you and do you have other heart-symptoms caused by your APS?
Could you please tell us how it goes with the further tests and what your APS-doctor says about your calcifications and if it has to do with APS or warfarin or other causes perhaps.
We learn from eachother as so few doctors know about this illness.
Hi Kirsten, after having a few PE's I was diagnosed with Lupus, my sister was diagnosed with Lupus a few years after me. My chest specialist said 2 in the same family couldn't have it and he told me that mine must be APS. We know now that this is not true as families can have APS. I do not have an APS doctor. I will let you know how I get on, after my tests. Take care From Sue. X
If you have read much about APS you know how difficult it is to have a diagnose. Sometimes from postive antibodies and sometimes only from symptoms. So very few doctors know about this illness!
The most important thing for us is to have an APS Specialist to talk to.
Hope you get to the bottom with your heart/chest symptoms. I have Pulmonary Hypertension and leaking heartvalves. I take warfarin since 4 years and keep a steady level by selftesting and my earlier very high bloodpressure (caused by APS) is also OK and steady. I have made several Echocardiografies with doppler.
Perhaps you should change your warfarin to Fragmin but first I think you should have a serious talk with an APS-Specialist. You have had PEs earlier.
Please let us know how you get on after your tests as you kindly promised.
Hi - just thought I would give you an update on my daughter following the phone call to Professor Hughes... was amazed when she rang, put through with no problem and he, as usual, took the time to really listen. He agreed immediately that the Pradaxa is not working and is happy for her to go back onto the fragmin. As she was on 10000 a day, he says he can't increase the dose for her but that is may be possible for her to split it so that the effect lasts through the day. He will write the letter to the GP today and have it faxed over so she can change meds straight away.
4th time we've had a consultation with Prof Hughes - still can't get over how wonderful his attitude and approach is and what an extraordinary difference that makes from the receiving end.
Thank you to all of you - and gentle hugs to those who need them today.
Floss112, my daughter is under Prof Khamashta (Recently diagnosed with APS - diagnosed with CFS/ME over 4 years ago, she's 18). She's been on various CFS meds (amitriptyline/proprananol, B12 injections bi-weekly, Vit D, etc) - (came off amitriptyline at Christmas) but back on it recently re awful (worse than usual brain fog or normal migraine) headaches. All consultants (GP, CFS consultant & Prof K) thought she has thyroid problems - as the area is very swollen - looks like she's swallowed a plate and it's stuck in her neck (she calls it her nate) - neck plate, but even an ultrasound showed clear. All Bt's say she doesn't have a thyroid issue. She's just started on baby aspirin - as she's had no thrombophilia issues, but this has made no difference to her symptoms. Do you think it's worth asking Prof K if it's worth her trying fragmin injections for a while to see if her symptoms ease?
(I'm actually on Pradaxa - diagnosed with primary APS 2 years ago - and have been on Pradaxa for nearly 2 years - suits me - but I feel blessed, as I don't seem to have (or if I do - they're not too noticeable) many symptoms).
So sorry to hear about your daughter - it is so hard when dealing with such issues in your children, especially when it is so difficult to chase down diagnoses and treatments.
She sounds very much like my own daughter - diagnosed as 'lazy teenager' at 15, CFS at 16, then the long road through fibromyalgia, Postural Orthostatic Tachycardia Syndrome, dysautonomia, Ehlers-Danlos Syndrome, functional neurophathy, 'unexplained weird stuff'... and finally, aged 21, I found this website and, through it, Prof Hughes..... I will never forget the day we sat in his office, listed her many strange symptoms (as we had done countless times before to countless other consultants, many of whom implied the problem was in my head!) and hearing him say that they were all 'typical' and the diagnosis unequivocal!
We were in many ways very lucky. She has had what we can see in retrospect were 'thrombotic events' but mild - blood clots due to cannulas, a few episodes of complex regional pain syndrome and other episodes of 'pain and swelling' in arms and legs, severe abdominal pain which was put down to gall blader (so they whipped it out) - but nothing documented, and thankfully nothing that didn't pass. I know that many medics reserve the 'big guns' like heparin for those who have had major incidents. Prof Hughes seems to be more open - he figures that, if you try it and it doesn't help, then it won't be of benefit, but if it does, then it will.
My daughter was very sceptical but was at uni, doing exams, and came out of one exam after being on it for just under a week and said that she couldn't believe how crystal clear her thinking had become. This was the clearest benefit - although she also had almost no migraines or abdominal pain, and I felt that she complained less about joint pain too. All of these benefits appeared shortly after each dose, but disappeared after 6 hours when she had a terrible 'drop'. They also disappeared totally when she stopped the heparin trial. She has tried the Pradaxa but has agreed with Prof Hughes that it isn't working for her so she is going back onto the heparin, and may try splitting the dose to prolong the effects.
Everyone is different, and reacts differently to meds, and I am in no way medically qualified - so I can't say whether heparin would be the way to go for your daughter. All I can do is speak from my own experience, and say that it seems to work for her and that, for us, the trial made sense. I personally would suggest that you speak to Prof K and see what his approach is.
Also, to put your daughter's mind at rest, the injections are not great but she found it easy and, after the first one, had no bruising at all. She injects in her tummy fat, and barely feels the needle, although the heparin itself can be a little stingy. She became so blasé about it that I had to persuade her that it wasn't a good idea to do it while wandering around the room!!!!!
I hope this helps -please feel free to message me if you want any more info, or if you just need a rant, one mum to another!
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Awaiting definitive diagnosis?
Seronegative APS?
Haematologist still says my migraines have nothing to do with APS/Hughes
Curiosity may have killed the cat, but it could save some of us!
