Stopping Arimidex for bone pain

Hello, I’ve been on Arimidex since 2005 and my hip is so sore, and only at night and a lower back pain. When I first took it I had very stiff ankles each morning, but that’s okay now.
I was worried about this as I’ve just been operated on for Paget’s Disease, so I had an MRI which showed I have arthritis, they also said that the side effects for Arim are joint problems, but they gave no solution or told me to stop taking it. IfI stop taking it, should I be looking to take something else? It seems whenever I think I’m getting to the 5 year plan of stopping, I get something again (wason Tamox from 2003 - 2005)
I am now starting to really get down about it all esp as my very nice Lap Dors recon is now hardly anything as they’ve taken most of it away because of the Paget’s.
Oh well…Life sucks sometimes. x

Only been on Arimidex a week, so no pains yet, but the future looks worse! I’ve always had arthritis so expect it to get worse. I was told by one BC nurse that they give us Arimidex or tamoxifen for 5 years as a ‘belt and braces’ regime, and that first 3 years is the important bit. Maybe those of you really suffering could discuss it with onc? I take omega 3, glucosamine, chondriotin , the lot!!
Will watch this space, and moan if I have to , love to all, Zoe

Hi ladies - many thanks for all your comments. It has been 2 weeks since I stopped Arimidex and the pain my hands and left hip is no better. I was wondering if this is due to the bisphosphonate, alendronic acid, I take weekly. I have been on it for 2+ yrs, since a bone scan showed arthritis, and a DEXA scan showed bone density loss, which could be due to 30+ yrs of steroids. I got an e-mail yesterday from healthcentral (don’t know how they got my email addres - big brother in cyberspace?) warning of the side effects of bisphops, one of which is severe bone and muscle pains and saying to report muscoskeletal pain to their doctor immediately and discuss whether they should discontinue taking the drug.

Guess I will continue, as advised by my GP, with the 3-4 weeks off Arimidex, then go and see him and discuss bisphops. I figure I would rather have osteoporosis than a recurrence of bc, although it is heartening to read Zoe’s post that the first 3 years on Arimidex or tamoxifen is the important bit. I have been on it for 4 yrs now, so may have gotten all the protection I need?

I think I will ask my GP for a referral to an Onc to get a specialised opinion. Although I did see a Professor of Endocrinology in January, he was only concerned with side effects of Arimidex, and not breast cancer itself. What a dilemma!
Thanks again,
Liz.

Hi Liz

I took Femara briefly and had horrible side effects. It took about 3months for the pains and aches to ease. 12 months on I now feel more like the old me. I stil get odd twinges and I still curse th b…y tablets.

I’m not taking anything else as Arimidex was the alternative. I’m hoping it keeps away without the pills.

I’m not a good example, but at the moment I’m enjoying life.

Take care

Marilyn x