I SUFFER WITH HUGHS SYNDROME

[loulou123]

IM A 52 YEAR OLD LADY AND JUST BEEN TOLD I HAVE APS SYNDROME IT HAS MADE ME THINK Y NOW AFTER 50 YEARS I FINE THE TREATMENT NOT VERY HELPFULL NOW I HAVE TO HAVE AN INJECTION DAILY AND SEE THE CONSULTANT TWO WEEKLY IM ALWAYS VERY TIERD AND ALL I WANT TO DO IS SLEEP ALSO HAVE TO TAKE VERY STRONG PAIN KILLERS COS MY LEGS ARE VERY PAINFULL DUE TO NUMOROUS BLOOD CLOTS THAT I HAVE HAD

[loulou123]

ANY ONE ELSE THAT SUFFERS THE SAME PLEASE FELL FREE TO MAKE CONTACT

[MaryF Administrator]

Hi there and welcome, a variety of us are on this forum, with a host of different symptoms and some the same as yours, I do hope you have somebody helping you, who understands the conditions, it will be helpful to know where you are located and who is looking after you, perhaps your GP or rheumatologist or hematologist. Lot of people on here will want to get to know you, and thanks for joining. Mary F x

[loulou123 in reply to MaryF]

im in manchester and go to see the hematologist every two weeks i dont feel the treatment is doing at lot at the min dont feel it really helps

[77tiger05]

loulou123,

Hi and welcome to the group!!! I too have had multiple clots, 5 in my left leg in 1995 when I lost the leg due to gangrene and then a stroke where I lost the vision in my right eye. So any questions you have just ask any of us. We are all here for each other. I live in the US but feel very close to this group just by hearing about everything they all go through.

[loulou123 in reply to 77tiger05]

well both my mum and dad had clots ive had five this year three last year and one in 2007 but sadley i lost my dad a few months ago made me very depressed not copeing well with this aps syndrome

[loulou123 in reply to 77tiger05]

what can happen to me long term i dont like asking the hospital doctors i dont have a good relationship with him

[loulou123]

yes i see the doctores regular thats it then its left to me and my husband to injecct my tratment daily which i hate haveing

[Jane-Martin]

Hi loulou and welcome to the group. How long have you been having the injections? Are you on any other treatment? Perhaps you can ask to see a rhumatologist, who perhaps will have more understanding of Hughes. Some people find Plaquenil help with pain and Fatigue. If you hate the injections, perhaps you could try warfarin instead to see if you are happier on that. I was on injections for 6 months, but went over to warfarin and been on that now for 10 years. I am so sorry for the loss of your dad. With treatment Hughes can and should be managed. Not many people are on injections or warfarin alone. There is a lot of information on the Hughes web site about treatment and many people have posted regarding there drug treatment. I take warfarin, ecotrin (aspirin) Plaquenil. I can't tolerate steroids, but some take it. I also have strong pain killers for when the pain gets bad. But take them as little as possible. I have also just started to take Glyconutients and food supplements, which I am finding very helpful. I will write a blog on them, once I have compleated 3 months on them. We are all here for you. Don't despair you now have a lot of support. Love Jane xxx

[loulou123 in reply to Jane-Martin]

i have been on warfrin but wasent suited to it i had a bleed for 11 hours in my mouth

[Suzypawz]

Hi Loulou,

Sorry to hear you have APS, plus about your clots you have already suffered, so many on here will understand what you have been & will be going through.

Manchester is quite near to me, I'm in Staffordshire.............not a million miles away, when I organize a meeting as I'm the area leader for the Derbyshire / Staffordshire area would you like to concider to come to it to chat to others who have the disorder?

It often helps just to see others face to face as well as chat to them on here.

On the warfarin subject & now you have to inject.......I am sorry about that, what consultant & where do you go?

Have you considered going to St. Thomas in London? I'm wondering if they could come up with other options for you maybe, also explains things to you better if you feel you are going no where with your docs?

It is a lot to take in when you are first diagnosed, we have all felt like that I'm sure & we still have bad times now we are all here for each other & we will the best we can in supporting you, hope you are feeling a little better today, Sue x

[loulou123 in reply to Suzypawz]

yes sounds goood love to come to a meeting sometime

[GinaD]

Hang in there Loulou. Many of us had to experiment about to find the anticoagulant that works. But once found, you can, as we say in the US, " get the hang of it" and live for years- decades even -without any further symptoms. It's an adjustment. And a tough one. But we'd all love to turn our experiences into help for others.

First suggestion: see a rheumy or a heme who has experience treating this. If you can not find a local doc with APS chops, travel to a doc who does. As you are on your side of the pond, you have the options of seeing The rheumys in London who literally wrote the book on Hughes. .

A trial at first, I know. But once you get acclimated to the anticoagulant that works for you, you will likely just slip back into your old life. Take heart! And ask questions of us! We'd love to help!

Gina

[loulou123]

hope to get some more answers tomorrow when i go and see the hospital doctor lets hope so feeling so so tierd all the time and fed up with the clots comeing all the time had around nine five this year