Hi - I'm new to this site and also new to the idea of possibly having lupus. I've got an appointment with the rheumatologist on Monday and I was wondering if there are certain things I should be asking.
My story is that I was diagnosed with Juvenile Rheumatoid Arthritis over 25 years ago at the age of 16 when I had joint pain and swelling that would jump from joint to joint and a rash over my body. I was very ill at the time and also had liver and kidney failure. I was very lucky and survived this and after a couple of years on steroids had no particular further problems . . . until my mid-30s when I had miscarriages and infertility. Blood tests came back showing a range of problems - I had a high titre of ANA, was also positive on anti-DNA and anti-Ro and complement levels were also abnormal. I was referred to the Miscarriage Clinic at Paddington where they were totally brilliant . . . I eventually got pregnant, took aspirin and have a lovely little girl. However, I think now that the bloodwork was overlooked - it said on one of the reports to refer to a Rheumatologist but this never happened - I now know that because of the anti-Ro there could have been a possibility of foetal heart block but this was never mentioned or tested for . . again I was lucky.
At the end of April I had a flare-up - the first for over 25 years - and I had joint pain and swelling all over accompanied by the same old rash which lasted for just over a week. I've had tests done through the GP and these came back positive for antiphospholipid antibody syndrome and the lupus anticoagulant was also positive. I am also always anaemic despite taking iron tablets from the doctor. As I say I've got a referral locally to see a rheum. specialist - I know it's dangerous to self-diagnose using the internet but from what I've read, I am strongly suspicious that I never had JRA and it has actually been SLE all along.
I'd be very grateful for any pointers as to what I should be asking about - although I'm now officially 'over the hill' we'd still like another child and I know that a lupus diagnosis could affect the way this could be dealt with. Any other ideas for me? I've only just discovered this website too so would appreicte any other tips people can give me.
Many thanks,
Lily
My story is that I was diagnosed with Juvenile Rheumatoid Arthritis over 25 years ago at the age of 16 when I had joint pain and swelling that would jump from joint to joint and a rash over my body. I was very ill at the time and also had liver and kidney failure. I was very lucky and survived this and after a couple of years on steroids had no particular further problems . . . until my mid-30s when I had miscarriages and infertility. Blood tests came back showing a range of problems - I had a high titre of ANA, was also positive on anti-DNA and anti-Ro and complement levels were also abnormal. I was referred to the Miscarriage Clinic at Paddington where they were totally brilliant . . . I eventually got pregnant, took aspirin and have a lovely little girl. However, I think now that the bloodwork was overlooked - it said on one of the reports to refer to a Rheumatologist but this never happened - I now know that because of the anti-Ro there could have been a possibility of foetal heart block but this was never mentioned or tested for . . again I was lucky.
At the end of April I had a flare-up - the first for over 25 years - and I had joint pain and swelling all over accompanied by the same old rash which lasted for just over a week. I've had tests done through the GP and these came back positive for antiphospholipid antibody syndrome and the lupus anticoagulant was also positive. I am also always anaemic despite taking iron tablets from the doctor. As I say I've got a referral locally to see a rheum. specialist - I know it's dangerous to self-diagnose using the internet but from what I've read, I am strongly suspicious that I never had JRA and it has actually been SLE all along.
I'd be very grateful for any pointers as to what I should be asking about - although I'm now officially 'over the hill' we'd still like another child and I know that a lupus diagnosis could affect the way this could be dealt with. Any other ideas for me? I've only just discovered this website too so would appreicte any other tips people can give me.
Many thanks,
Lily