Hello again, it seems I'm always moaning, but don't know what else I can do.
I'm lupus anticoagulant positive I also have; Sjogrens, Lupus, Fibromyalgia, 4 prolapsed discs & a heart condition called Long QT (adult cot death syndrome)
My INR is kept between 4 & 4.5. I take 18-20mg warfarin daily.
I can't take Pantilquin (sorry spelt wrong) coz it nearly caused me to have a heart attack.
I was on Methatrexate injections but felt so sick 6/7 days after 2 years I came off it. I now take azathioprine, mepacrine and this year had to reduce from 10mg to 7.5mg prednisone and I take 120mg of Dihydrocodine continus twice a day for pain
The thing is I know my health is going down hill fast. It's scaring me. I am exhausted all the time, for example: Sunday I went out with my husband and dog we were out 30mins, a lot of that I was sitting on a bench, when I got home I fell asleep and woke up after 3 hours!!! I ache so much in my muscles after sitting just to eat a meal. Nights are torture. I have pain just about everywhere all day & night
My INR is currently 3.7 and I'm sure I'm having microclots as I get sudden onset random pains in my head.
I've had all the blood tests u suggest and I'm in range for everything (even Vit D, which is usually low).
I keep crying because I feel my active life is disappearing and I'll soon be housebound.
I'm trying to not be depressed (I don't want to scare off the few visitors I do have) due to my heart I can't take antidepressants. I'm having counselling and thought that it would be good to talk about how I feel but she is practicing a technique called DMER ???? so even that's not as I'd hoped.
My local rheumatologist (Dr DeLord) is great but can't think of anything else to do. I wrote to Prof D'Cruz ( my top specialist) and he didn't reply (tried phoning but never answered and answer phone is always full).
Haematologist is useless but finally agreed I need an INR if 3.5-4.5 and we try to keep it between 4&4.5.
I know this is a long post - but can anyone tell me what I can do before I have no life worth living left. I just can't cope with the pain & utter exhaustion anymore. As I have a lot wrong I don't know which condition causes it. Do u think it's the APS ? I do feel much better when my INR is 4.5 💋