Ellie - can I join your club? I am in the realms of beyond too! Various bone scans and DEXA scans have confirmed I have bone density loss (most likely due to 30+ years of steroids and exacerbated by Arimidex) and osteo -arthritis. Latter probably ageing, as I am 63 yrs young now.
Interesting Elliem when my bc surgeon prescribed Alendronic Acid to my GP, he said most people struggle with these drugs, but although I have Crohn’s, I have not had any problems with them in my GI tract - and know my Crohn’s is from the mouth to the anus.
Tara, thanks for your response . I ask myself, “what medical team?” I have a gastroenterologist, youngish, on his first consultancy, who said verbatim, when I got bc, 2 days after my first consultation with him (had already got Crohn’s for some 30 yrs), “I can’t interfere with your bc treatment - that is life threatening, Crohn’s is not”. I was discharged by 2nd Oncologist after chemo and rads, and only saw my bc surgeon annually for the past 5 years… Onc retired last year, my bc nurse also retired , and all I really have now are 2 IBD specialist nurses to go to for help. Thankfully, they are brilliant.
I stopped Arimidex 3 weeks ago, due to severe hip, feet and hand pain…and am feeling so much better, although feel very nauseous, and haven’t eaten a proper meal in the last week. Is this withdrawal symptoms? I have lost 9 lbs this week. Luckily, I don’t wake up every 2 hours nnow with the pain in my left hip and can walk a bit farther without pain in my left foot. I had a bone scan 2 yrs ago, dx arthritis of both hips, feet and hands, a DEXA scan that showed low bone density so put on bisphops, Alendronic Acid, so wondered which drug was causing the problems. Have an appointment next week with to ask for a referral to a new Oncologist, who is up to date with bc and IBD, recommended by my gastro. I had 2 months of tamoxifen, when on rads, then 4 yrs of Arimidex, but obviously concerned about bc recurrence as my cancer had spread to my lymph nodes, and was non palpable. It is a minefield for me to navigate at the moment. I am also on weekly chemo, methotrexate for Crohn’s, but liver tests are good, although MCV and MCH blood levels are out of range.
Sometimes, I feel mired in the mud of breast cancer and struggling to find my way out. None of my doctors seem to talk to each other - they each have their own specialities and seems nether the twain shall meet. I would love to crack their heads together.
Off to bed, late and tired…praying for a solution as to what meds I should take. Feel like being between the devil and the deep blue sea at the moment.
Liz.