I went from being excited because I had a diagnosis & a treatment , to totally depressed and frustrated.

[designer16]

I feel like I have no help with the doctors, so I am reaching out to anyone for help. Prof. Khasmashta dx me with Sero-negative Hughes syndrome. I started Clexane & instantly improved. I am in a wheelchair & walk short distances w/a walker. I walked better & was exercising so I can get out of this damm chair. I went to a hematologist who agreed to treat me but did not have a lot of experience with Hughes. He wanted to keep me on the clexane. One problem clexane is not available in the USA, Lovenox is. They are comprable but not the same. My luck-lovenox did not work as great. The increased the dose I had a migrane, neck & back ache, and ended up in ER. Went back to clexane & went back to where I was. Started warfarin. Woke up & walking was so much easier. I was so excited. It ended there. After that morning I was out of clexane. They gave me Arixta which is another type of low molecular heparin. After 1 week of warfarin my INR is 2.5 & I feel nothing like I did with the clexane. I do not know if you get to a INr of 2.5-3.5 do you instantly feel better. Will my body stop aching. Will the swelling go down in my feet & legs. I do not know what to expect. Is this as good as it get? Or do I need to give it time. I have no experience nor does my dr. I asked for help from prof. Khasmashta but he just told me clexane & lovenox were comparable, but Warfarin is the same in the US & London. Not much help. I would have like to know if in general people feel better when they get to the correct INR. I know he doesn't have a crystal ball. I am so depressed designer16

[Hidden]

Hi

When I was on Warfarin I had to keep my INR in the range 3 - 4 to stay well. 2.5 was just too low for me. I ran the risk of it going sky high sometimes and regularly had to rescue it from the 5s... I had a self check machine and that helped me a lot, made me feel in control.

Good luck

Tx

[MaryF Administrator]

Sorry you are feeling so fed up - the two comments above sort of say it all, please do keep us posted with any progress made. Mary F x