confusion and lonely

[kimmi9]

im so confused about hughes syndrome there is no information really that is avaliable i have symptoms but not sure if its the hughes or something else

[Manofmendip]

Hello Kimmi and welcome to our group.

Please have a look on:

hughes-syndrome.org

there is a lot of information on there.

What symptoms are you getting and who have you consulted so far? Also, could you please tell us where you are in the world.

Best wishes.

Dave

[kimmi9]

Hi Dave i live in england , my journey has been a long one , my portal vein had a blood clot and i had a dvt in my right calf , well because the portal vein was completley blocked it gave me ulcerated collitis , everything was infected and i very nearly died , 5 weeks in hospital and left with the diagnosis of hughes syndrome , i have been hunting for help , support and info since , the whole experience has left me terrified !! my inr levels keep droping to around 1.5 and they would like me to be 2-3 , im having trouble getting around as my legs get so weak , my right leg at the ankle is starting to go a little purple and is painfull to touch and my memory is awfull , im taking warfrin 10 1/2 mg daily im just a total mess right now.

[thomas_tz in reply to kimmi9]

Hi kimmi9, welcome! Just a question about your right leg; are you wearing a compression stocking? The ankle issue might be solved that way. Speak to your GP or vascular surgeon, and ask them to recommend a good brand of stockings (and show you how you must wear it).

I hope this helps!

[Manofmendip in reply to kimmi9]

Hi Kimmi

Who, as a clinician, is taking care of you and setting your INR target? Many of us with APS need an INR between 3 & 4.

Best wishes

Dave

[MaryF Administrator]

Welcome to our forum, we will do our best to sort out any questions you have and give you the right advice and guidance and of course support, we are a friendly bunch and share information between ourselves well, you will probably find a lot more clarity and relief about it all by being on here. Also lots of useful medical papers available to read or down load on our Charity website. Mary F x

[jessielou]

Hi hon

Welcome and glad you found us. We know that feeling of a long journey well.

I hope we can help, lots of warm friendly people on here and we'll try!!

Is awful to be so poorly and feel alone hon!

Try the link Dave posted above, a s he says loads of great info!

Hope you feeling better.

Take care, gentle hugs love Sheena xxxxx

[jessielou]

Omg, is this me being daft or what, blooming Hughes brain fog!!!

[jessielou]

Cheers hon!!!

Thought I'de lost even more of my marbles!! Not many left as it is!!!

Love n gentle hugs Sheena xxxxxx

[marycath]

All the best Kimmie and welcome. Many of us have been like you, with so many frightening things happening at once or in the past, and suddenly we get/find a diagnosis, and want to find out about how others have coped, and where we can get our information from, and you've come to the right place. It's just 6 years since I found out, and 2 years since a knowledgeable specialist gave a positive diagnosis

[SueLovett]

Hello so pleased you found us.

When we are first diagnosed it seems like a lonely place but you have found this informative site now and we care about what happens to you.

As mentioned do have a look at the foundation website as it is very informative and you can join and, if you can come, we have an annual patients conference where our leading consultants give talks and answer patients questions.

You are not on your own any more.

Take care and keep in touch x

[TJSTICKYBLOOD]

Kimmi I had Portal vein thrombosis that led to a perforated bowel and I ended up having a resection. I went on to have conclusions in my popliteal artery long saphenous vein and occluded a kidney all before I was diagnosed unfortunately, since diagnosis and being on warfarin I have not had any more clots but do suffer with the damage done, fatigue and stiff joints.

[kimmi9]

thank you so much for all your kind comments , it is a relieve to find other people that are in a position to give advice and a kind word , believe me it`s great thank you , hopefully i will get to know you all in time.

Dave my inr is being controlled by the anticoagulant clinic which is local to my hospital and heamatolical consultant which i am seeing evey 3 months , they are trying to get my inr levels at between 2-3 which at the moment is 1.6.

[kimmi9]

thank you thomas i am at gp today i will ask about the stockings im so happy to be getting advice thank you so much.

[GinaD]

Hi Kimmi. I always feel a bit odd when I say " Welcome," as it seems to also mean I'm happy you have Hughes. Well I'm not. NOT Happy that you have Hughes that is. But I'm glad you found our group and welcome!

Are you aware of the various dietary issues with warfarin? I googled the brand name, "Coumadin," and found a most complete list of warfarin agonists, ( help warfarin make blood thinner,) and antagonists, ( make blood thicker by increasing Vitamin K levels.).

You will find that most of those " healthy" green leafies make our blood thicker.

So many docs will advise their patients to avoid all green leafy veggies. I have made my own dietary bargains which work for me. I try to eat roughly the same amount of Vitamin K foods a day.

And if you are still having INR issues know that the most frequent cause of that is dietary. It ain't easy avoiding green. There are other complications possible with maintaining a stable INR, but the dietary ones are the most common. I'm sure your doc told you this when you were first diagnosed, but really . . . It is hard keeping track of all the daily factors which could influence the INR and then try to even it out.

Good luck and please, ask and vent away. That's what we're here for.

Gina

[kimmi9]

hi gina thank you for your advice , i am aware of the dietry needs to keep my inr levels stable , the worst thing is not being able to eat brussel sprouts because i love my green veg lol , i spose it will take a bit of time for me to work out what i can eat and what i cant and get a good level of healthy foods that will help , i am finding it hard i will take a look at your advice thanks kim.

[london-lass]

Hi Kimmi

Where in the UK are you? There are some support groups.

I run one in London for those with Hughes Syndrome. It is a great help to meet others with the same.

Blessings Ann

[kimmi9]

Hi Ann i live in suffolk nr ipswich if there where a group nearby i would love to go along thanks kim

[putterbunneh in reply to kimmi9]

Maybe there is a group near you. I hope so. If you call the Hughes Syndrome Foundation (HSF) they could give you information about your nearest group. I think it's: Telephone: [phone] email: [e-mail]

Very best wishes

Jen

[kathyD64]

hi kim are you on any other medications? some people do require much higher doses of warfarin to get to target and some doctors get worried prescribing it - certainly i feel dreadful with a low inr. Just a suggestion and to gain peace of mind i paid £220 to see prof Khamastha at london bridge privately you will get an appointment generally within a couple of weeks - the best money i spent! i had the diagnosis of APS and was already on warfarin before i went but it was to gain an updated second opinion on my treatment & current research as i was suffering from other clotting issues, micro clots that gave me symptoms but not always left evidence on scans etc... once he has seen you he can advise your gp and current anti coagulant clinics of his expert opinion to which they will take notice off. It must be such a worrying time having been close to death and its your body so fight for the correct treatment hun and gain as much knowledge as you can. Sadly many doctors and even specialist do not fully understand the complexity of having APS and recognise fatigue and other symptoms are related to the condition. If he wishes to follow you up he may try to see you under the NHS at St Thomas's to carry out more test (but cut backs are affecting this area!) or can guide your GP etc he is a wonderful man and will make you feel at ease straight away. Take care kathy xx

[kimmi9]

Hi Kathy i take on board with what you are saying but it is almost impossible for me to go private as i am now on benefits , so making this decision very hard as there is no money left in the pot for things like that , on top of all my own problems my hubby has pulmanary lung deasise so i feel stuck in a rut with nowhere to turn.I went to see my gp about my leg going purple yesterday and she wants me to see the heamatology consultant which is going to take some weeks , i feel that i get nowhere with the nhs but have no choice , i also have a chest infection and have been given antibiotics which i know mess around with the warfrin dose my inr is already low and yes i feel bad enough as it is , im sorry to be moaning about my problems i know there are people out there worse off than me , but this is the only chance that i have had to off load , thank you to all of you out there that have been giving me advice and simply giving me the chance to chat. Kim

[MaryF Administrator]

Please do print out some of the papers on our HSF website or and this article and deliver them to your doctor. I have had to fight hard for myself and my children which I did politely and firmly with bells on. I am glad you have joined our forum by the way!

telegraph.co.uk/health/4400...

Mary F x

[kimmi9]

I Mary im sorry but can you explain how i get to the HSF website im sorry but my memory is so bad i just never remember anything !! Kim x

[MaryF Administrator]

There is a link at the top of this website, but here you go anyhow.. the sites are linked:

However I quite understand so here it is; hughes-syndrome.org/ and also you can find books under Patients - information. Also under Doctors - research. Best of luck.

Mary F x

[kimmi9]

Thank you Mary x

[Hidden]

Hi Kimmi, your problem seems very familiar. I've been on high Warfarin doses over the last 10 months and people said it was because I was resistant to it. When I finally saw the Haematologist 10 days ago he said "no wonder, given some of the other medication you are on" and "they should have been aware of this known medication interaction".

Get your own GP to check the compatibility of your medications out.

As regards the low INR, they may need to boost you with Clexane. When I had my INR checked 2 days ago, the senior nurse told the one doing it, that If I ever dropped to 1.8 INR she must inject me with Clexane (short term) and then adjust upwards the Warfarin dose.

The diet thing is subjective, yes they go on about greens and full fat cheese etc. I think the main thing is to eat YOUR balanced diet (eat normally) rather than trying to cut things out. I believe it's big fluctuations in diet or binge drinking that cause INR fluctuation. I eat what I always have, including the things I mentioned, and drink alchohol every day (2-3 units) and never binge. My times between INR tests can be up to 2 months because it is very stable, so I can't be doing that much wrong. The only reason I'm having them every few days at present is because I'm weaning off of some of my medication that affects the Warfarin and hence my INR.

I wish you luck.

[kimmi9]

Hi everyone , not feeling too good at the mo my inr is like a rollercoaster im on 101/2 mg warfrin it`s so hard to cope with all the symptoms of hughes and feeling sorry for myself today , it`s my birthday today and havn`t been able to get out !!! doe`s anyone else out there have mobilty problems ?? sometimes im ok and other days im in pain and cant walk around too far , i would appreciate any tips or advice on this , thanks Kim.

[kimmi9]

Thank you APsnotfab x