Topic: Osteopenia, TMJ and Arimidex

Hi Roseann,

Wow, I thought I was one of the few with this problem. I have arthritis of my shoulder, osteopenia, and wicked osteoarthritic TMJ. My oncologist has held my bisphosphonates partially because he's worried about possible early osteonecrosis, as my bone scan was newly positive near where the TMJ abuts the zygoma. So for now, it's just calcium (1200 mg/day) and Vit D3 (2000 per day). I'm also on femara. 

May I ask where your bone scan showed positive? you mention it lite up at the TMJ itself?

I have often wondered whether these aromatase inhibitors may be causing joint destruction or tenosynovitis of the TMJ and they just havent' studied it yet. Like the carpel tunnel syndrome which I had four years ago when on Arimidex (completed the five years). Don't ask, no one tells?

Tender

Tender,

I'm also having a problem with bone thining and lost too much since 2 1/2 years on Fermara. Cannot take  bisphosphonates either as I have too many dental problems, he wants me to swith to Tamoxifen and I wish I could stay on AI. I'm also on 1200 mg of calcium citrate since a month and previous on 1000mg. Did your onc recommend anything else to prevent furthur loss and I wonder why my onc is so prompt to swith me when yours seems confortable on you still taking it. So many questions.....thanks for sharing and was reading on another post that Aromasin was easier on bones, as I know you are very well informed this is why I'm asking, hope your bone loss stops and that you do well on Femara

 Welga

Tender,

 I'm very grateful for all the information provided, and I did not know that we could receive bisphosphonates in infusion. Also that jaw necrosis would be a problem only after 13 or so. Nice to know there is an option out there for me. 

About tamoxifen versus femara, I am really surprised there is no benefit of one over the other. Either alone or sequentiel.  Since all the talk about wether we are metabolizing Tamoxifen or not came along, I wonder what could be done if we are poor metabolizer, and cannot stay on Femara because of possible jaw necrosis if we use biphos (on someone like me who has lots of dental problems) but need it for bone loss caused by Femara.

Here in Quebec the metabolizing test are not done, I also cannot pay for medication that are not covered like I think Evista or anything else that would not be accepted by our governement as standard care, as of now I don't have to pay for any of my medication considering my being out of work and low income (bc brought this on).

Wish you well, and love reading you  and also getting your advice always very clear and complete

 Welga

Tender,

Yes I understand, nice of you to specify about the magic number. Intravenous route being more common for giving ONJ but easier on the stomach, really makes it hard to decide if one wants to go that way when having dental problem, really something to think about before starting any of them, I wish sometimes I was younger and did not have to worry about all those things, sigh.......or older as you say much to be studied on bisphosphonates, then we could get a better treatment option.

I started out with good bone density, never thought I would end up having to rethink my treatment options. 

Have a nice week-end

Welga

Don't drink any colas ! All cola's -coke, pepsi, Dr. Pepper ,diet and regular contain phosophoric acid.

Phosphoric Acid binds with calcium and takes it straight out of your system.

Osteoporosis was unknown before Coke was invented. The worst part is women drink coke instead of milk - double whammy. 

I drink either water or carbonated water like San Pelligrino with lemon or lime.

No one on Arimidex should drink cola. Believe me - I spent 15 years in soft drink research !

chapstick mom 

I'm on Arimidex, have been for over 6 years, and developed Osteopenia about a year ago.

No-one explained to me than I should take Calcium/VitD along with Arimidex.

I had to ask for a bone scan, I never even got a baseline at the start of Arimidex, and had no knowledge that this was needed. I got results of my Dexa scan, which showed Osteopenia, and even then was not offered anything. I had to ask again for Calcium/VitD !

I have been having, over the last 2 years, 'crumbly teeth' sick of visiting dentist. He blames Arimidex. I have no TMJ.

I lived on Coca-cola until I read what it does to your skeleton, about 3 years ago. I hate milk, and anything made with milk, and could drink a 2ltr. bottle a day easily !  Who knew.

Isabella.

Hi Roseann.

I have had to self advocate all the way thru the last 6 and a half years. If it hadn't have been for this site I would still be in the dark about everything.

My doctors do not like me questioning 'why' about the way things are being done.

I still am having an awful time with Arimidex, lots of pain, 2x carpal tunnel, 2x plantar fasiitis, fatigue, but was told this 'wasn't' Arimidex. Even though there were hundreds of other women screaming about the same symptoms I was told I was wrong. I was told NOT to go onto Internet sites, particularly the American sites....( you're all getting all you ask for because the insurance picks up the tab !! ) Our Health service is very 'hot and cold' some hospitals are very good, some, like mine, have consultants who are very obstructive, and seem to be overwhelmed with what is happening. We have endless queues, all waiting to see one main oncologist, its impossible she can remember each and every one of us, and there is just no way on earth can she closely monitor how a new drug may be working. There are queues for surgery, arguments about drugs, (unless you just stand and take whats on offer ), long waits between checkups, fights to get a copy of your reports....I waited 4 months arguing back and forth to get sight of my path. report 'NO-ONE has asked for this before !!!' (This from a major university teaching hospital !!!!) Now my GP just sighs and gets her receptionist to run me off a copy after all visits.

I am just starting yet another battle to get a copy of my MRI scan, (told it is their report, not mine !!) I have requested they send a copy to my GP, which they have to do, then I will get it that way. Was told I wasn't getting it because I 'wouldn't understand the medical terms' Trouble is , as I get older I worry I won't have the fight in me to keep on doing this.

Isabella.