Newly diagnosed with APS/Hughes

[incontrol1]

Hi,recently diagnosed male,42 yrs old. Suffered multiple P.E last May,was taken off anti-coagulants on November,then suffered a clot on my leg in March. Been suffering from sore joints for many years but doctors couldn't find a reason.

Hoping for some positive info on Hughes/APS

[Manofmendip]

Hello and welcome to our friendly forum.

One good thing is that you have been diagnosed, as so many people suffer with symptoms for years until they get a diagnosis.

Please familiarise yourself with the charity's website:

hughes-syndrome.org

Also, it will help us and others to help you, if you could say where in the UK you are from.

You should be referred to an APS experienced consultant and there is a list of UK consultants on the charity's website at:

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

Let us know how you get on. I'm sure that others will be in touch with you on here soon.

Best regards.

Dave

[incontrol1 in reply to Manofmendip]

Many thanks for the welcome Dave.

I live in Northern Ireland so will have a look at the websites etc.

I've been on Warfarin for almost four weeks and my INR has only reached 1.4,the doctor wants it between 2.5 and 3.5. Feeling fed up being black and blue from the Clexane injections.

The doctor has said there is a slight chance my joint pain may ease once my INR is stable but there's no guarantee. Hope she's right.

[Manofmendip in reply to incontrol1]

Hi

Many APS patients need an INR of between 3.5 & 4.0 and it is sometimes difficult, without support from an APS experienced consultant, to convince GPs & INR clinics that this is safe and necessary.

Dave

[incontrol1]

Thanks for the welcome. I was out on Rivaroxaban after the P.E's but after six months they said I should stop as I had had no further issues. I found it strange as I'd hope not to have had any issues being on anticoagulants.

Main thing is I'm alive and finally know what's wrong.

[Ozchick in reply to incontrol1]

That's very strange to me also. I'm also on Rivaroxaban + aspirin and was told I'd be on it for life. (I couldn't be sufficiently anticoagulated with Warfarin or Clexane) It's not a condition that vanishes after 6 months! Was the advice to stop from an APS specialist? After two serious clotting events I would think that it would be unwise not to have anticoagulants.

[incontrol1 in reply to Ozchick]

Hi Ozchick,the consultant at the hospital told me that I would only be on the mess for around six months. I checked with my own GP when the time was up and he agreed I should stop taking the Rivaroxaban.

I had seen my rheumatologist at the hospital just before the clot on my leg happened and she requested blood samples. The levels were raised for the second occasion and she contacted my GP to request I was put on to Warfarin immediately. Unfortunately by the time the results came back I had taken the clot..

[Carsonp]

Hi There. I am Carson, and I had a stoke in 2001 at 41. You sound right on target for a man with APS. A really GOOD doctor is key. I have a Rheumatologist, who has me on immune suppression meds Myfortic. I also had infusions of a chemo drug Rituxan, (or Rituximab). Those 2 aggressive treatments have kept me stable now for 2 years staying out of the hospital. I used to end up there almost every year with complications. Pneumonia, and further clots, including my lungs, which then hemorrhaged. Bottom line, a good doctor who will look outside the box. I am now 55, and trying to "live" the best life I have ahead. The severity definitely varies among individuals. I want to give you a link to a great "closed group" started by a very knowledgeable man James. If you aren't a member yet, the link is ....facebook.com/groups/apsca/ .......I myself, have stayed away from Facebook, in general this past year. I wanted to focus on everything other than APS, and the time eating vortex of Facebook. That being said, I did happen to see this page link from my email, and wanted to take a minute to reach out with some information on a great resource. I did start a blog a few years back, that is been inactive for some time. I have been thinking of getting it going again. It is menwithaps.blogspot.com/ -I will go post and try to jump start it again. You reaching out has inspired me. All the best, -Carson.

[incontrol1 in reply to Carsonp]

Thanks for the links and support Carson,I really appreciate it.

[Ozchick]

As the previous poster has said-You need a really good doctor!! Two +ve's make a firm diagnosis of APS. I don't know whereabouts you are but the Hughes Charity site has a great list of doctors who specialise in APS. Don't be fobbed off by someone who doesn't understand the disease or you will be laying the foundation for more clots in the future. I have felt really well on Rivaroxaban but others here manage well on Warfarin or Clexane. You need to find the "cure" that suits you best, so you will feel "normal" again

[incontrol1 in reply to Ozchick]

Unfortunately I'm in Northern Ireland and there are no specialists listed.

I'll just need to take each day at a time.

Again,thanks for taking the time to reply.

[Ozchick]

I'm sure you're not the only Irish person on here so hopefully someone can help you. I'm not much good- I'm in Australia but lucky enough to have a good Rheumy and Haematologist to look after me. If you are able to travel to find the right doctor it will change your life. My walking buddy tells me I look really well for a sick person. I used to take her along for the times I got dizzy or got blurred vision, so I had someone to hang on to. Nowadays, I'm happy to walk the dog on my own as I can't remember the last time I had the dizzy spells. (Mind you-that could also be a bit of brain fog that makes me forget and catches me out!)

[Lure2]

Hi, As I have been on this site for some years now I think you have got some very good answers!

I want to add (I live in Stockholm): If there is not a Specialist in Northern Ireland then you have to find him or her somewhere else! Do not give up on that. It is not like a GP.

Read "Sticky Blood Explained" by Kay Thackray. It is written some years ago and does not have the latest oral drugs but the symptoms are the same. She writes about the different symptoms and how it is to live with this rare illness that so few Doctors know about. Try to learn as much as you can. Knowledge is power for us!

I selftest and and we need a rather high INR as we very seldom bleed from APS but more often clot. My therapeutic range is an INR between 3.2 - 3.8. I feel best just under 4.0.

Good Luck to find your Specialist!

Best wishes from Kerstin in Stockholm

[MaryF Administrator]

Hi and welcome, I hope you have found the advice so far useful. MaryF