Stopped Arimidex due to bone pain - what now?

[lizziecee]

I was dx with IDC and intermediate DCIS in Jan 2003 - 2 cm non palpable tumour and 3/18 positive lymph nodes. Had WLE and total axillary removal. 6 x FEC and 25 rads. 2 months on tamoxifen, then Onc switched me to Arimidex in Feb 2004.  I have had increasing debilitating severe pain in left hip, left foot and both hands. DEXA scan showed increased bone density loss to that of a DEXA scan done before bc (ordered by gastro due to 30+ yrs of steroids). BC surgeon prescribed Fosamax and Calcichew/Vit.D3. A bone scan showed osteo arthritis in both hips, hands and feet. No meds prescribed. I am on weekly injections of 12.5 mg methotrexate for Crohn's.

My GP suggested I stop the Arimidex for 3-4 weeks to see if the pain diminished, which miraculously it has. I see him next week for follow up and wonder what my options are for a med to prevent bc recurrence.....tamoxifen, femara?
My Onc discharged me after finishing rads and I have only been monitored annually by bc surgeon, mammos and ultrasounds bi-annually. Onc retired last year. NED at present. My gastro has suggested I see a new female Oncologist who has an interest in both bc and gastro issues, but want to be able to discuss my situation intelligently with her. I saw a Professor of Endocrinology in Feb 2008, referred by my bc surgeon, as this guy has an academic interest in side effects of Arimidex. He suggested I continue with Arimidex and Fosamax to prevent further bone loss, but I cannot stand the pain and disturbance to my sleep.

Does anyone have any experience of stopping Arimidex and getting a different med that does not have the side effect of bone pain?  I had two fractures in both feet last year and am concerned about osteoporosis (I am considered osteopenic at present) and particularly a hip fracture, so do want to continue with the Fosamax if possible.

Many thanks for any advice/help.
Liz, in Cornwall, England.

[lizziecee]

Many thanks for your response which has given me hope that I can take an adjuvant bc med, and have no hip or foot pain. As I was dx with osteo arthritis of both hips, feet and hands after a bone scan a few years ago, I just never connected the pain with Arimidex and thought it was "old age" and arthritis. I was discharged by the Oncologist who helped me through chemo and rads, and have only seen my bc surgeon annually since Feb 2004. I did mention the bone pains to him and he sent me off for the bone scan. I guess as he is not an Oncologist, he also, like me, didn't connect the dots. My original Onc retired last year, so I have been referred to a female Onc who treats bc. Having socialised medicine here, the waiting time for a consultant appt can sometimes be lengthy, although I was treated speedily for bc. I am hoping to be seen within 2 weeks.

I too am on Fosamax, which is a real pain (no pun intended) to take as I do miss my early morning cup of tea. Going to ask if I can have the 3 monthly injection of a bisphosphonate instead.

Thanks again for your input - you have made my day!
take care,
Liz.

[PaulMD]

Hi!

I'm an oncologist.  I hope your treatment will be successful.  Regards.

[Greta_L]

lizziecee,
I am a 2 year survivor, left breast mastectomy Stage 2b with 4 of 15 nodes involved, 3.5 cm nonpalpable. Had 7 chemo treatments and skipped the last one because neuropathy got too bad in my feet. No radiation.
After chemo I used Arimidex for about 6 months.  The joint started in one thumb, the next week the other, the next a knee, then a hip until I called it quits.   In just 2 weeks off of the drug I felt improvement.  My oncologist switched me to Aromasin and I have not had the joint pain reappear after 1 year. My last bone density showed a slight loss of mass, so I just started Fosamax a month ago.
I'd say give Aromasin a try. Good Luck!

[lizziecee]

Just a quick update - saw my GP and he gave me various options:
1. Go back onto Arimidex for one week and see if hip pain returns. Absolutely unacceptable.
2. Take tamoxifen - again unacceptable, as prognosis for non-recurrence is better with an IA.
3. Switch to Femara or Aromasin
4. Referral to a bc Oncologist at my hospital - he finally hit my button!

He is referring me to a female Onc with a special interest in not only bc, but lymphoedema, which I unusually have in the affected breast, but not arm - I never "present" normally.

I would like to sincerely thank you, not only for your timely and erudite responses to my queries, but for those to others - I have learned so much from your posts.

Are you an Oncologist, surgeon, or General Practitioner?
Regards,
Liz in Cornwall, England.

[PaulMD]

Femara and Arimidex are under the same class.  Either may be given with the bone agents.  It depends on what you and your doctor can decide.  Regards.

[lizziecee]

Many thanks for your response and advice.  I have been on both drugs together - Arimidex for 4 yrs, Fosamax for 3 yrs. I stopped the Arimidex 4 wks ago but have continued with weekly Fosamax. The bone pain in my hip and foot has diminished considerably, although I still have shooting pains in both thumbs and 1st 2 fingers. I am a little confused as to your advice......when you say "a possible brilliant solution is to take these drugs together WITH bone protective agents...", which 2 drugs are you referring to? Did you mean either Arimidex or Femara?

I have an appt with my GP on Wed to discuss the situation and shall ask for a referral to an Oncologist as GP's in England cannot change AI prescriptions.

My thanks again.
Liz.

[PaulMD]

Hi there.

The Aromatase inhibitors type of drugs: arimidex or femara, has this common side effect of diminishing bone mineral density that may cause your pain.  I believe that femara may cause the same symptoms.  A plausible brilliant solution is to take these drugs together with bone protective agents such as fosamax, though the effect of pain lowering may not be immediate.  Tamoxifen treatment may increase bone mineral density and has less skeletal complications compared to the aromatase inhibitors, but it has more vascular side effects such as venous thrombosis.  I suggest you discuss all of these options with your doctors to come up with a tailor fit treatment plan.  A possibility would be to have a lead time of fosamax intake (about a month) before re-introducing Arimidex.

Regards and God bless.