Hello,for 3 years I have been treated for auto hymletic anemia .I had a course of rituximab a few years ago but it made little difference.Last year after two bone marrow biopsies I was also diagnosed with Cold Aggluttinin Disease,a rare immune disease which only affects one in a million people.The main symptoms are fatigue and exhaustion ,but a total intolerance to the cold.My extremities go black/purple and when the blood flow returns the pain is awful.My consultant initially said it was just reynards syndrome,but things slowly got worse.They decided to put me on rituximab and chemo.I was Very dubious about the chemo.It isn’t strictly a cancer but it behaves like one and they have detected an abnormal bone marrow protein .In short my immune system is killing my red blood cells as they are being produced.
i wasn’t prepared for the severity of the chemo,so much so I haven’t finished my third course and I am going to ask to come off,I have had 3 sessions and potentially a further 3-5 sessions to come.I would rather live with the conditions than go through this Again.I think the dosage is too high .If they tell me there’s no alternative then I will have to think seriously about what to do.
my heart goes out to anyone who is undergoing chemo etc,and is suffering and wish you all speeedy recovery and easing of your pain.Im not a good patient and I’m not as brave as people who have no other choice.I hope I have an alternative .
i hope this doesn’t sound too self pitying and would be grateful if anyone has similar condition and experience .
thank you
