After being what I thought fit and healthy nurse/Cancer centre manager at 54, I nosedived into GCA 3 days ago. Apart from cancer 12yrs ago and a three weekly mild neutropaenia (born with it) I'm very fit and active. After a brief consult with Rheum'y I am on 40mg Pred with no plan about reduction. I feel shocking on them two hours after and then bump along the bottom the rest of the day. Taking them at teatime is better and I sleep but the morning is heavy going. I may well have to give up my job. I have a few questions about meds. I realise any replies are peoples' personal experiences and I have to make my own informed opinion in conjunction with my doc. I will be having an argument/discussion with them though as I'm not happy with a one size fits all approach. It was my GP who suggested collaboration with the Haematologist!
Pred- why are we all given the same dose regardless of size and age? I'm small and tend to react strongly (good and bad) to every drug and seem to get the rarer side effects. I worry about my neutropaenia and steroids but the docs just seemed to avoid that bit. Do they ever go to a lowest dose to control the symptoms, increasing if it is insufficient? How easy is it to control effects with diet/fluid control?
Bisphosphonates - The oesophageal irritation worries me as I have the BRCA2 gene and a family history of oesophageal cancer. I tend to have a sensitive stomach as it is. I can only take Ranitidine and not Omperazole. There are other side effects that really bother me too, such as microfractures. I am thinking of asking them to allow me to go free for six months then do a DEXA scan to see if I'm in trouble, as it takes about three months for osteoporosis to start. Has anyone gone for just diet, supplementation and good weights exercise instead?
Biopsy - what's that like?
I may seem like a whining ninny but it's early days and I'm stressed out from going from being normal to potentially having my life stopped in the space of 24hours. Having nearly been killed by cancer treatments because the docs didn't listen to me until it was nearly too late, makes me very nervous and it seems like, here we go again.