life changing APS

[Danni33]

I am a 51 year old women who was prefectly fit and well non smoker, non drinker who suffered a stroke in Jan 15, which affected my right side mobility, as a consequence I was tested for APS which was positive. Iin the delay in getting me started on Warafin I suffered another stroke in June which has left me with severe fatigue and less mobility on my right side, I am unable to go out alone or using a chair. I have been diagnosed with seizures too.

Although my GP has been brilliant she doesn't understand APS and its symptoms and they have become confused with stroke symptoms. My haematologist just told me my diagnosis and said you be okay on Warafin and that there would be no other symptoms.

Unfortunately my Warafin doesn't seem to be able to control my INR which has gone back to 1.2 from 2.7 in 2 weeks, my nurse asked if I had actually been taking it! I am now injecting tinzaparin sodium every day as well as taking 5mg of Warafarin.

I am seeing a rheumatologist and neurologist next week but I suspect they will not know much about this disease.

I live in Warwickshire and I would be grateful if there is anyone close by as I am unable to drive, that I could contact who is suffering anything similar and how they are coping with it.

[MaryF Administrator]

Hello and welcome to our forum, firstly you have landed in the right place and secondly all is not lost here, it is vital that you and your GP look through our charity website at the up to date information: hughes-syndrome.org/ and it is vital that the referrals made are too somebody off our list of recommended specialists: hughes-syndrome.org/self-he...

There is no problem in sending an email to the secretary's of the GP and Consultants, marked for their attention with the links to the charity for information purposes.

If you are not in the UK, I/we will still endeavour to help you. At times for Hughes Syndrome/APS patients are also put on Plaquenil for severe fatigue, alongside their anticoagulation. It is also important, while all this testing is going on that your Thyroid is looked at test wise, plus your levels of vitamin D, B12 and Iron (Ferritin). Not everybody reacts the same way to drugs, it is a case of fine tuning your medication with a specialist at the helm who fully understands this disease not partially understands it. Please feel free to gain support from us all and ask and questions. You are not alone, and it is good that they thought to test you for this, others have not been! MaryF

[Danni33 in reply to MaryF]

Many thanks, I am seeing a local rheumatologist next week and I ask him to refer me to one of the list in Birmingham which is the nearest to me.

It is reassuring that others understand what Hughes affects you

[Tinythepanda in reply to Danni33]

I'm so sorry to hear you've had a hard time

I see professor gordon at Birmingham City hospital.

She is an amazing consultant and knows this illness inside out.

If you can get a referal to see her you will be in incredibly safe hands.

Gemma

[Danni33 in reply to Tinythepanda]

Many thanks for you advice, I will definitely try to see her

[KerryA]

Hi Danni

I live in S Wales, not too far from you. I'm 53 and had my 1st major clots 23 years ago in my leg and lungs. I've had some other big ups and downs. Since seeing an experienced haematologist and using a coagucheck machine to monitor my INR, which was for many years very difficult to regulate, my condition has been much more stable, not more clots or haemorrhages. Sometimes I've had to take huge doses like 16mg! when my INR stayed below 2 and I now take about 8mg to keep it in range. So don't be surprised if you sometimes have to take bigger doses as long as it's closely monitored especially if other things are changing such as if you get a cold, INR will be affected.

I recommend you seeing a good haematologist and discuss self monitoring.

Have you had any Physio for stroke rehab?

I wish you well and experencd help during this unsettling time.

[Lure2 in reply to KerryA]

Hi KerryA,

I selftest every second day since 3 years here in Stockholm. In that way i can follow my INR and as i make notes (very important) I also learn how my body reacts on different things as to my INR that is.

My therapeutic INR level is 3.2 - 3.8 and I feel best at 3.8! I practically never change the tablets (2 tablets à 2,5 mg of warfarin daily).

I also eat broccoli and brusselspouts and spinach rich in K-vit every day the same amount. If I notice that my INR is a bit high I eat some more brusselsprouts and in 15 hours my INR is reduced. If the INR is too low I do not eat any green vegs that day I do not eat brusselsprouts every day but use it to lower my INR and eat perhaps 10 of them if INR is much too high

I have all the antibodies there are for APS and I am said to be primary APS (no other autoimmun illnesses like SLE or Sjögrens etc).

Why I write so much about this is because Warfarin has meant so much to me but i have also learnt that we must be high in INR and learn how to manage Warfarin and stay stable. The last thing is very important I have found.

If you change your warfarin-tablets it takes 2 - 3 days before the body reacts.

Best wishes from Kerstin in Stockholm

[Danni33 in reply to Lure2]

Many thanks for your helpful advice

Diane

[KerryA in reply to Lure2]

Hi Kerstin

Thank you for your thoughts.

You're right, our bodies do also respond to what we eat and finding what helps or hinders each of us individually is so important and to gain confidence to adjust diet, medication etc sensitively to these changes and monitor regularly. I too feel better at the top end of my therapeutic range of 3-4. It's great to be able to share our ideas and experiences and learn from each other.

Best wishes

Kerry

[merrohawk83]

Hi Danni33, I'm sorry to hear of your troubles. When your INR dropped to 1.2 - did they increase your warfarin? It sounds to me as though you aren't taking enough for your body! When I was taking warfarin, I needed to take up to 11mg at times as my INR was sub-therapeutic 70% of the time. I am now on Rivaroxaban instead and have had no further issues since changing medication. I also live in Warwickshire - I haven't had a stroke, but DVT/PE/Stillbirth and diagnosed with APS in February this year.

[Danni33 in reply to merrohawk83]

Thank you for your reply. I am having my INR checked at Warwick Hospital tomorrow and they did increase my Warafarin to 5mg daily from 4mg and I am also injecting Tinzaparin daily for a week. Have you seen a specialist in Warwickshire as so far everyone I see seem not to know much about Hughes.

Regards

Diane

[Manofmendip]

Hi Danni and welcome.

I agree with the advice that my colleague Mary and Kerstin and the other members have given you.

Good luck and keep in touch.

best wishes.

Dave

[Danni33 in reply to Manofmendip]

Many thanks