osteoporosis Please need advice

zohra · May 2018

My mom is taking Armedix for almost four years. Her last bone scan showed osteoporosis.

She started taking VitaminD and calcium .

Her recent bone scan shows improvement.

But, she has lot of pain. She has arthritis as well.

Any medication or supplement recommendation for her osteoporosis.

Thanks

chronicpain · May 2018

Surely her doctors have made suggestions with a new OPorosis dx? Usually bisphosphonates are used, such as alendronate (fosamax) zometa ( zoledronic acid or Reclast) , or Prolia ( denosumab) together with adequate D and calcium, to lower fracture risk.

But OP itself, without more, should not cause pain, so it could be the arthritis (what kind does she have? rheumatoid? osteo? degenerative? , ) or something else causing pain (mets? muscles? neuropathy?). OP causes pain when there is a fracture, or spinal distortion from prior fractures, otherwise it is pretty silent.

When you say her “bone scan” showed improvement on OP you probably mean her BMD (bone mineral density test which measures mass per unit volume). Scans like docs use for bone mets are different and not diagnostic of OP.

If you meant BMD is “ improved” on just calcium and D keep in mind osteoarthritis can make it look falsely better. There has to be at least a 3% improvement to be significant.

Talk to her docs, if she allows, and get clarity on cause of her pain and they will treat that, and also ask why she is not on additional OP rx like listed above while at it. Sometimes they have to do plain films to check for subtle fracture that could cause pain

zohra · May 2018

Hi Chronicpain,

Thanks for your quick reply. She has Zometa shots every six month.

I apologize I meant her bone dentisy test showed improvment.

Thanks for your advice I am communicating with her oncologist about her pain.

Thanks again

karen1956 · May 2018

When I was on Arimidex, significant joint pain, especially in my knees and my knuckles. Her pain could be the AI's, her arthritis or other things....talk to her oncologist

zohra · May 2018

yes, I will

Thanks Karen 1956

ctmbsikia · May 2018

PA spine L1-L4 BMD: 0.930 g/cm2 T-score: -1.1, low bone mass, osteopenia

Total hip BMD: 0.715 g/cm2 T-score: -1.9, low bone mass, osteopenia

Femoral neck BMD: 0.576 g/cm2 T-score: -2.5, osteoporosis

Those are my DEXA scores from last fall and right before my BC dx. I should also note that I have aches and pains mostly one leg and both wrists-no idea what from it was never bad enough for me to find out. As I'm nearing the next step in treatment I am fearful of taking an AI as surely I will also have to take shots or another pill for my bones. This is going to suck! Excuse my French. I'm currently researching other methods/protocols. Thought I put this here as well in case anyone has gone through the same, or has any medical advice.

chronicpain · May 2018

ctmbskia, how many years post-menopausal are you?

Your baseline OPorosis could be from loss of estrogen at menopause ( in pts with OP usually within five years patients, BMD is at a plateau after menopause)

Docs should still look for secondary causes and treat those , if present: vitamin D deficiency, ( 25-OH D level should be kept over 30), primary hyperparathyroidism (high or inappropriately normal pth with high blood calcium, can be surgically cured) , multiple myeloma (SPEP order for blood) , inadequate calcium intake (recommended between 1.2-1.5 grams elemental/ day in divided doses from diet or supplements), 24 hour urine for calcium and creatinine to look for either calcium wasting in urine (treat with hydrochlorothiazide) or low urine calcium (often from inadequate intake), drugs (prednisone, seizure meds, gastric acid blockers), hyperthyroidism, Cushings, celiac disease.

I recommend considering an endocrinology consultation.

Docs can treat both the OPorosis (with or without secondary causes) and use arimidex to block estrogen for the BC, e.g., see my post above about OP options, and then monitor closely.

Fall precautions and avoidance of high fall risk activities, alcohol, and smoking, and anything that can make people unsteady (low b12, carrying big loads, dogs on leashes that lead to falls, grandkids knocking you down, wear secure grip shoes, very important) as are moderate weight-bearing exercize and muscle strengthening for better balance. Use a cane if unsteady.

I have osteoporosis and started Arimidex and Prolia a few months ago, already on plenty of calcium, D, magnesium

edwards750 · May 2018

I have osteoporosis too. My MO started me on Arimidex but after my bone density test confirmed osteoporosis she switched me to Tamoxifen because Arimidex attacks the bones. I’m wondering why your doctors would prescribe Arimidex for someone with osteoporosis?

Diane

ctmbsikia · May 2018

Thank you chronic. I am 56 menopause right around 50. My MO did give me the impression that is was possible to take Arimidex and have OP. When I go back I just hope she'll work with me as I did not really get into my other aches and pains that is of unknown cause. Perhaps an endo consult is a good idea. I had a blood work up done back in March and it seems my Vit D was back up-my primary had prescribed 50,000 units, 1x per week last fall, I also take a 10mg statin for high cholesterol. The only other numbers out of range was my LH (hormone) is low. Chloride was just over normal. Just seems like I could potentially be taking a lot of stuff putting it through the liver and/or kidneys. I'm in the benefit vs risk debate with myself going into this treatment. So, I've decided to give up the daily wine, substitute it with some veggie juice. I was already eating better (trying to stave off the fatigue), but the RO warned me about losing weight during treatment. I'm done with him now so thankful to have 3 days off to recover and get back on that track. My gut was thanking me too just a few short weeks ago. I have a month until I go back. Taking a break from all the reading and worrying. I'll have a better mind by then, thanks again! Be well!

Mommyathome · August 2018

I was diagnosed with dcis in 2013, had bmx and total hysterectomy 2014 due to strong family history of breast and ovarian cancer. I was diagnosed with osteopenia in my spine in 2015. I had bone scan this month and it show a progression of bone loss. I know have osteoporosis if the spine and osteopenia in my hips. The level for spine was -2.7. I currently (since 2015) take 3000 ui of vitamin d and 500 mg of calcium. I go to see endocrinologists on sept 13 for follow up after bone scan. Not sure what we are going to do to stop this from progressing. I turn 46 on August 29. I’m too young for so many issues: breast cancer, pre cancerous polyps and now osteoporosis! My cancer was er/pr positive. Anyone in similar situation? What do you take? Do? Not sure what’s she’s going to recommend. I know i need to be careful with adding any type of hormones. Last thing i need is a recurrence!!

Thoughts? I feel like I was punched in the gut with this information.

JoE777 · August 2018

her oncologist should be the person to answer that question.

Georgia1 · August 2018

Hi there Mommy. Sorry to hear that but you have a few good choices. Your recurrence risk may be low enough to switch from an AI to Tamoxifen, which builds bones. Or you could add a weekly pill, like Fosomax. Or you could add a quarterly (I think) shot like Prolia, which fights both osteoporosis and bone mets

It was my MO who helped me figure that out but my endoctronologist gave me a second opinion; I'm now on Tamoxifen and Fosomax with no side effects. Best wishes.

edwards750 · August 2018

I have osteoporosis too. Brutal. I took Arimidex for 1 year but shouldn’t have because it attacks the bones and I hadosteopenia at the time of my DX. My MO switched me to Tamoxifen for the last 4 years of my 5 year plan.

Sorry about your progression.

You are too young to be dealing with all of this.

Keep us posted.

Diane

DLJ46 · September 2018

Hi Mommyathome-I am not exactly your diagnosis, but just wanted to share my osteoporosis diagnosis of my hip(femoral neck). T score -2.8. I just found out today. Background-diagnosed TNBC May 2017, surgery followed by chemo and rads. I have been on Vit D 2,000 IU daily since completion of treatment. I am not sure if I should follow up with my oncologist who ordered the dexascan or maybe consult with an endocrinologist. I guess I will do both.

I cried and cried today. So I understand your “punch in the gut". I do feel I have aged 20 years from the chemo/breast cancer diagnosis.Mentally and now confirmed physically. I turn 48 tomorrow.

Take care

edwards750 · September 2018

I take VitD, calcium and Boniva once a month. My internist suggested Prolia but it’s really pricey. I had severe bouts with osteoporosis a few months ago to the point sitting and walking was difficult.

I went to a chiropractor at first to see what was causing the pain. He thought it was the sciatic nerve. My internist examined me and said there were no fractures. She thought X-rays were unnecessary. She determined it was osteoporosis. I bought one of the donut pillows to sit on and it’s helped and now I only have intermittent pain. Mine is in my hip. Sometimes it’s hard to sleep because I sleep on the side with osteoporosis.

I would get the dexa scan done. Stay on top of it as best you can. I ate calcium rich foods and am pretty active but still got it.

I was going to take Fosomax but it can cause jaw problems and I have dental issues so couldn’t chance it.

Good luck!

Diane

osteoporosis Please need advice

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