Newbie

[Chef_Spartacus]

Hello everyone, my name is Paul I have suspected APS not fully diagnosed as of yet, it's been about 10 months since I've been on warfarin it's a great drug it cured many minor ailments I had with no noticeable side effects.

Unfortunately I have many other debilitating symptoms that all need medication basically my body is falling apart as I was misdiagnosed for several years some doctors telling me not to worry about blood in my urine!?!? Other doctors telling me to take paracetamol for excruciating spasmodic pain!?!? The symptoms got that bad that someone had to take charge and do some tests but it took a specialist to do that! Now I find myself in deep water where this disease is taking a piece of me every day!

APS has had full control of my life for the past year I have worked hard but still only part time (40/45hrs) freelance! I also have sciatica in both hips for over a month now ouch! I've been crippled for three weeks thankfully it's a quit period for my trade so good time for a holiday or to be off sick lol.

I don't want this kind of life style this illness is ruling my life and that isn't how this is going to end I'm not looking for miracles just control it would be nice to be only taking warfarin!

I hope I am going to be a source of inspiration for those struggling to cope with this crippling illness. I am going to put my APS Diary on here for all to see and hopefully try some of the treatments I am experimenting with!

Firstly I was referred to a Kinesiologist immediately I set up an appointment I was given ionic silver which I have been taking for nearly 3 wks, in the first week I noticed my eye sight had improved greatly, over the past year it was slowly decreasing! My eye sight is still a lot better!

My brain/head has changed completely I'm now eager to get on with my life I'm able to sort problems in my head without getting confused or stressed!

I'm no longer wanting to sleep all day!

My skin (Rash) has calmed down!

All the above have been with me crippling my life but I have light at the end of the tunnel which I didn't have before I started the Kinesiology three weeks ago!!!

Since then I have been for acupuncture for the first time in my life, twice! Did it make me feel better? Yes it did I'm now looking into a Pranamat!

I am also looking into " pain genie" sounds like a miracle by all accounts!

Also talking to dietary specialists in America who think APS is curable with a diet change!

I will try to give regular updates I look forward to any questions or comments.

Best regards everyone

Paul

[MaryF Administrator]

HI, good to hear you are doing well, but Hughes Syndrome/APS does need specialist management and there can be very dangerous interactions between supplements, herbs and such like when taking Warfarin. I am sure you will aware that Iron, D and B need an eye kept on as does the Thyroid. MaryF

[Chef_Spartacus in reply to MaryF]

Hello Mary,

Thank you for your advise it's a case of learn as you go for me but I will always seek advise before taking any meds natural or otherwise.

I didn't realise APS needed specialist care no specialist or doctor have ever recommended or referred me for specialist care I actually fell the care I am receiving is ok but it's only pills on pills doctors know nothing of this disease. That's why I have decided to take matters in to my own hands but like I said I will tread carefully and always seek professional advise.

[MaryF Administrator in reply to Chef_Spartacus]

Can you tell me where you are located, as diet alone will not cure your Hughes Syndrome/APS however you can make yourself as healthy as possible most of us strive for that. MaryF

[Chef_Spartacus in reply to MaryF]

Thank you Mary,

Unfortunately I travel a lot due to my work my family (mum, brothers & sisters live in Northamptonshire. My doctor is registered in Cornwall as worked there all through 2014 and I will probably go back sometime this year early march.

I do eat a healthy diet and don't drink alcohol, I smoke 5/10 max a day I'm not sure yet what is meant by a healthy diet for APS? I have learnt about the things I shouldn't eat that's about it as far as diet goes!

[MaryF Administrator in reply to Chef_Spartacus]

Hi do please familiarize yourself with the charity website, lots of useful information, and also suggested books to read which you can buy easily. hughes-syndrome.org/self-he...

or you can self refer privately to The London Lupus Centre/London Bridge Hospital

I expect your GP/nurse will have given you a diet sheet for Warfarin.

hughes-syndrome.org/

MaryF

[Chef_Spartacus in reply to MaryF]

Thanks again Mary, no I have never been given a diet sheet for warfarin!?!?!

[Lure2]

Hi, I agree with Mary that APS is really an illness that needs Specialist care.

So very few doctors know about it and I should advise you to find an APS-specialist to get the diagnose. What therapeutic value are you on with the warfarin ? APS is sticky blood and our blood is very thick so we need an INR around 3.5 where we have few symptoms and feel good.

I selftest every second day so I know how much the INR changes from day to day.

Please get an APS-doctor so you can control your illness before it controls you! It should be interesting to read your APS-diary. We learn so much from eachother.

Best wishes from Kerstin in Stockholm

[Chef_Spartacus in reply to Lure2]

Hello Kerstin,

Thank you for your feedback I also agree with Mary!

My INR IS 2.7 last count in Dec 14. My target is 2.5 to 3.5 it has only gone over 3 once so my Warfarin was reduced! I notice a lot of people on here have 3.5 why is mine not set at that? I will speak to my doctors or warfarin clinic.

Thanks again

Take care

Paul

[MaryF Administrator in reply to Chef_Spartacus]

I have replied to you above, unless the rheumatologist or haematologist understands Hughes/APS fully they will not necessarily be keen on increasing your target level. MaryF

[Chef_Spartacus in reply to MaryF]

I've not seen any specialist rheumatologist or haematologist at the moment I have been assigned to a neurologist!

[MaryF Administrator in reply to Chef_Spartacus]

Please show your GP the list of specialists on the list. Best of luck. MaryF

[Lure2]

I agree with Mary again!

I can tell you that I also had a therapeutic range between 2.5 - 3.5 3 months ago. I had my Hematologist to change it to 3.0 - 3.5 and as I selftest I can try to keep it around 3.5. The doctors are so afraid for a bleed but we do not bleed often but more often we have a DVT, a PE, a TIA or a stroke.

Get a diagnose and an APS-specialist or vice versa. I am sure you will be all right then. Learn as much as possible about Hughes Syndrome (Sticky blood or APS)

Kerstin

[Lure2]

One more: we have found that the neurologists do not understand our sticky blood so good. The best doctors are the Rheumatologists and also Hematologists. I have both.

Kerstin

[Chef_Spartacus in reply to Lure2]

Thank you I will look into this and lucky you you have both!

Lol

[MaryF Administrator in reply to Chef_Spartacus]

hughes-syndrome.org/self-he...

MaryF

[Chef_Spartacus in reply to MaryF]

Thanks Mary

[AnnNY]

Also, APS can occur with other autoimmune diseases, and rheumatologists are best at diagnosing those. At the moment, I'm not diagnosed with APS since I haven't had an event and I have low titers of the autoantibodies, but I am diagnosed with a lupus like undifferentiated connective tissue disease which can cause symptoms like you. I think Dr. Hughes recommends plaquenil for his APS patients, and it is the first line drug for people with various autoimmune illnesses. Over the years, plaquenil has really helped me live a pretty good life, despite everything, up until two years ago. Now I'm trying to get someone to let me try warfrin or heperin in the US. I believe plaquenil is called something else in the UK.

Good luck, but I'd find a good rheumatologist first, because there are other meds that might help.

[Chef_Spartacus in reply to AnnNY]

Hello Ann,

Thank you for getting involved I'm going to look up what you said and mention it to my doc, along with a number of things I have learnt since I first looked at this site. So thank you everyone. X

I look forward to getting more involved with people and seeing if we can help each other :))

Bye for now and take care

[london-lass in reply to Chef_Spartacus]

Hi Paul

I have just moved from London to Cornwall, and have been seen by an excellent team of haematologists at the hospital in Truro, who were very well versed in APS. So much so that I am discharging myself from St Thomas/ Guys. The consultant knew Professor Hunt very well. You should ask your GP to refer you.

How did you get your diagnosis?

I too am on warfarin, but my target is 4 to 4.5. Below 4 I get symptoms back, but function well over 4. They were happy with that, and the local clinic are letting me self test.

As stated earlier, the consultant usually sets the INR target for you. I agree with everything that has been said above.

Good luck and blessings

Ann

[Chef_Spartacus in reply to london-lass]

Hello Ann,

Your going to love living in Cornwall weather is always better than everywhere else, I'm hoping to be back down as soon as I get my "suspected" sciatica sorted! :/

I will defo ring my doc and see if they will refer me problem is I'm not in Cornwall at the moment! so I need to hold on for a bit.

I need to talk to someone that knows more about APS than your average doc (no disrespect intended).

I know they will not increase my dose on my say so!

If ever I feel really bad I will now take an extra small amount of warfarin!

Thanks Ann

Best wishes

[chrissybell]

Paul, you need a diagnosis of APS firstly. This is done by doing a lupus anticoag blood test (have to have it done in hospital - and IF it's positive they'll do another 12 weeks later) - If that too is positive (and you've had previous DVT/PEs) then you'll have the APS diagnosis. Although I work for a GP practice in Surrey it took me 18 months for my GPs I work with, as well as my own GP to 'persuade' the hospital to test me - the test suite is about £300. Once I had a diagnosis - I paid privately to see Professor Khamashta (works with Prof Hughes, and Prof Hunt at the Lupus centre in London (worth every penny). And I am now under him - via the NHS. Other than that I agree with all the others say above (I'm not on warfarin - as I was not well controlled on it, I'm on a new drug - only just licenced in the UK) - although nothing is really licenced for APS - only for 'keeping risk down of further incidences (clots etc). I feel blessed that although I was covered (both lungs) in PEs - once I got better and on the right meds for me - I've not noticed too much health wise wrong with me - apart from memory problems with words, other than that as I'm knocking on towards 50 - so feel maybe other issues are 'getting older ones' . Of my 7 GPs I work with they all knew a little about it, but not enough to help me - although they did say my warfarin levels should have been set higher - but once I had a diagnosis I changed drugs anyway! I have joined the 'Hughes Association' - and their help pages are invaluable. Good luck with finding a specialist.

[Chef_Spartacus in reply to chrissybell]

Hi Chrissy,

Thank you so much for your inspiring words and thank you to all that like Chrissy have given me guidance and inspiration

I knew I needed help I just didn't know from whom or where, so joining this site is the best thing I've done to date you guys have given me a lot to think about and a lot of stuff I need to get done.

I will report back on Monday after I talk to my doctor I'm not sure what kind of response I will be greeted with but it's worth asking then we can take it from there.

Thanks again guys

Best wishes

Paul

[Lure2]

I agree with crissybel!

It is impossible to take control of this illness yourself. We all need a Specialist of APS.

Good luck from Kerstin

[Chef_Spartacus in reply to Lure2]

Thank you Kirsten,

Please read reply to Chrissy!

Have a good day

Best wishes

Paul

[Lure2 in reply to Chef_Spartacus]

Has your GP put you on warfarin because he thinks you have got APS?

A doctor must be responsible for your health regarding the Warfarin. You should never change the dose the doctor has recommended by yourself!!

Especially as you do not even test very often. You say you did a test on December 14 last year. And now you are going to increase the dose by yourself perhaps.

Some of us are very sensitive to warfarin and our INR can change in 2 days from 6.0 to 4.0 in INR

As I told you I test every second day and I have all the antibodies there are for APS and in high titres also. I have a Hematolog (specialist of APS) who is responsible for my warfarin. It can be a very dangerous drug not handled correctly.

Please Paul get a specialist and learn about APS and warfarin and take a new INR-test.

Good luck on Monday and let us hear how it goes for you

Kerstin

[Chef_Spartacus in reply to Lure2]

Hi Kirsten,

I was sure I replied to your message but never mind I can up date you now as I have more info!

Firstly, I would never change my prescribed medication unless advised by a professional and I would say the same thing to anyone taking life changing medication!

Thank you for your concerns Kirsten I appreciate it

I have put up a new post today you may have read it if not I will relay to you now.

I have been referred to a hemeotologist which is great news and thanks to your advise, I have also spoken to my Kinesiologist, my Doctor and my Neurologist they all agree the "Ionic Silver" will not interfer with the Warfarin, also if the "Ionic Silver" is helping me they see no reason why I shouldn't take it, my Doctor's only concern was if I was taking it regularly and I am!

The "Ionic Silver" helps the good cells fight off the bad cells in turn helping my immune system bring my body back to a normal state

I'm a big believer in alternative medicine assisting in the removal of viruses, bugs and illnesses that attack your physical well being. This is also a proven fact!

Thank you once again Kirsten and co for all your invaluable advice Stella job.

Take care

Best wishes

Paul

[Lure2]

Glad to hear that you have been referred to an APS-specialist.

Good luck!

Kerstin