Hi - I'd like to share my story too if that's ok.
I had been ill on and off for a few years including severe migraines and have always had a low white blood count.
I had 2 babies and suffered considerably in pregnancy and childbirth including anaemia and pre eclampsia and post natal depression - both were em caesarians.
I suffered on and off after and lost jobs due to constant headaches and infections.
My third pregnancy was horrendous - I was absolutely exhausted and anaemic and nearly died during caesarian as i lost 8 pints of blood. After having my third baby things got considerably worse I suffered severe exhaustion and depression and had a really bad breakdown I really didnt know what was happening. I was at the gps every week and my blood counts were always down and showed infection but they didnt know what was wrong. It was only when my hair started falling out that i saw a dermatologist who took blood tests that indicated connective tissue disease.
I was put on plaquenil but was allergic to it and was basically left for a yr without treatment when i got considerably worse.
My bloods are often highly irregular or normal and i have frequent shows of blood and protein in my urine every now and then.
This year has been the worst I have been on metho. imuran and have been allergic to both and so have just had 2 cycles of rituximab. I have also been diagnosed with raynauds and have iloprost infusions.
I am taking steroids, calcium, codeine, paracetamol, tramadol, lanzoprozol, diazepam, folic acid, diclofenac, metaclopramide and imigran all adding up to 40 plus tablets a day.
My joints are awful and i can hardly move on some days and am extremely fatigued - the pain is unbearable sometimes. My memory also is abismal and i have sleep problems including night sweats and night terrors, anxiety and confusion.
I always wonder if the yr i wasnt offered drugs made it worse as it was said to be ' mild' then.
My worry is prognosis no one ever can really tell me what will happen. I've been to a and e on 4 ocassions this year with paralysis in legs, severe stomach cramps and diarhhea, passing out due to hypotension and chronic leg pain. And admitted 3 times for chemo and iloprost infusions.
I feelawful at the moment and am not sure what the future holds.
Thanks for listening
Sheira x
I had been ill on and off for a few years including severe migraines and have always had a low white blood count.
I had 2 babies and suffered considerably in pregnancy and childbirth including anaemia and pre eclampsia and post natal depression - both were em caesarians.
I suffered on and off after and lost jobs due to constant headaches and infections.
My third pregnancy was horrendous - I was absolutely exhausted and anaemic and nearly died during caesarian as i lost 8 pints of blood. After having my third baby things got considerably worse I suffered severe exhaustion and depression and had a really bad breakdown I really didnt know what was happening. I was at the gps every week and my blood counts were always down and showed infection but they didnt know what was wrong. It was only when my hair started falling out that i saw a dermatologist who took blood tests that indicated connective tissue disease.
I was put on plaquenil but was allergic to it and was basically left for a yr without treatment when i got considerably worse.
My bloods are often highly irregular or normal and i have frequent shows of blood and protein in my urine every now and then.
This year has been the worst I have been on metho. imuran and have been allergic to both and so have just had 2 cycles of rituximab. I have also been diagnosed with raynauds and have iloprost infusions.
I am taking steroids, calcium, codeine, paracetamol, tramadol, lanzoprozol, diazepam, folic acid, diclofenac, metaclopramide and imigran all adding up to 40 plus tablets a day.
My joints are awful and i can hardly move on some days and am extremely fatigued - the pain is unbearable sometimes. My memory also is abismal and i have sleep problems including night sweats and night terrors, anxiety and confusion.
I always wonder if the yr i wasnt offered drugs made it worse as it was said to be ' mild' then.
My worry is prognosis no one ever can really tell me what will happen. I've been to a and e on 4 ocassions this year with paralysis in legs, severe stomach cramps and diarhhea, passing out due to hypotension and chronic leg pain. And admitted 3 times for chemo and iloprost infusions.
I feelawful at the moment and am not sure what the future holds.
Thanks for listening
Sheira x