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Osteoporosis

Fayard's picture
Fayard
Posts: 438
Joined: May 2011







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 Is anyone taking medication for osteoporosis? If so, which one? Side effects? Effectiveness?

I just came back from the doctor, and he did a bone density scan. I had one in 2011, right after I finished chemo. Of course I developed osteoporosis from chemo :(. The scan today shows something like -3.3 on my spinal. The doc said is significant, whatever that means. He wants to put me on a mediation that comes in shots, once a year. The nurse was supposed to give the name, but I am guessing she gave the wrong one, Gabapentin, because I just looked at it on Google and it is for epilepsy and neuro conditions. I hope she made a mistake!

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Hi Fayard:

Just been diagnosed with the same thing - Significant Osteosporosis  also -3.3     They wanted to me take Fosamax and also add Calcium.    Further, I also found out that I have DJD in my neck (Degenerative Joint Disease)    I am to go for an EMG to see if I have any nerve damage because I have been getting numbness and tingling in my left arm.

Because my Vitiman D was also low again (this time 24 - previous 14) and that has a lot to do with Osteoporosis, at this time all I am is now taking 1000 units of Vitamin D daily.   Prior I took 50,000 units twice a week for eight weeks and then 1 once a week until the prescription was gone.

I didn't want to take any medication because of the side effects.   I have been having headaches and I believe that was one of the side effects.   Also, the best thing is exercise.  Although with Osteoporosis I believe the better exercise is swimming or pool exercises.  I am still looking into this.

Kathy

 

Here's the side effects/warnings of Fosamax   I thought I would just take my chances and try exercise and diet

 

 

----------------------WARNINGS AND PRECAUTIONS------------------------

  •   Upper Gastrointestinal Adverse Reactions can occur. Instruct patients to follow dosing instructions. Discontinue if new or worsening symptoms occur. (5.1)

  •   Hypocalcemia can worsen and must be corrected prior to use. (5.2)

  •   Severe Bone, Joint, Muscle Pain may occur. Discontinue use if

    severe symptoms develop. (5.3)

  •   Osteonecrosis of the Jaw has been reported. (5.4)

  •   Atypical Femur Fractures have been reported. Patients with new

    thigh or groin pain should be evaluated to rule out an incomplete femoral fracture. (5.5)

    ------------------------------ ADVERSE REACTIONS-------------------------------

    Most common adverse reactions (greater than or equal to 3%) are abdominal pain, acid regurgitation, constipation, diarrhea, dyspepsia, musculoskeletal pain, nausea. (6.1) 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2911
Joined: Mar 2013

I had my first bone density about two years ago.  I don't know the reading I had but I remember being told it was thinning and the recommendation was Fosomax or Reclast, or one of those bisphosphonates.  I asked for them to send me the possible side-effects and saw it was an impressive list. 

Like you, Kathey, I opted not to get the drugs and focus on calcium, D-3 (The recommended form of vitame D is vitamin D3) and weight bearing exercise.  I could probably do better on the D-3 and exercise piece.  

Fayard's picture
Fayard
Posts: 438
Joined: May 2011

I called my doc today and the correct medication is Reclast. I did some research, and yes, side effect are extensive!

I walk 5 dasy a week for about 40 minutes and dance for 20 to 25 minutes. It feel like it is not working, since it went from -2.5 to -3.3. I do not want to take prescription medicine.

I take vitamine D with K2, but you ladies are mentioning D3, what is the difference?

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Vitamin D3

The regular Vitamin D is absored through diet.   The D3 is more detailed.  something like that

pinky104
Posts: 574
Joined: Feb 2013

I've beem taking Evista since just before I hit menopause (it's really supposed to be given after menopause).  I've been able to avoid osteoporosis because of this medicine.  My mother had celiac disease, which contributed to her terrible osteoporosis (she shrunk from 5'4" to 4'9").  I didn't want to end up hunched over like her.  The real reason I started on Evista was that a study had just been done showing it helped to prevent breast cancer, so my family physician suggested I try it.  My mother and grandmother both had breast cancer, so I decided it would be wise to take the drug.  I don't know if it helps out after osteoporosis has already come into play.  It has a risk of clots and can cause leg cramps.  I believe there are other side effects, but I've never had any other than the leg cramps.  It has to be stopped a few days before any surgery because of the clotting side effects. 

artist49
Posts: 87
Joined: Oct 2011

I have the same situation as all of you with doctor suggesting  reclast

and me afraid of the side effects.  I am now using a weighted vest

several hours a day as I do my housework and I also exercise with it.

We'll see if it helps at the next bone scan.  Also take vit d3 and k.

I got my weighted vest from Dr. Furman  and I feel a difference in my

body since I started using it. I am not  related to Dr. Furman just his

product has great reviews and it is very comfortable.

Fayard's picture
Fayard
Posts: 438
Joined: May 2011

That was going to be my next comment: I am using a weight vest when I walk in the afternoons (about 2 miles walk).

However, my vest is not the best. I was researching vesst and found the one you just mentioned and this one http://www.hyperwear.com/all-products/10-lb-hyper-vestr-pro-best-weighted-vest.html#ad-image-0. I am not sure about which one to buy.

For how long should I wear it (every day)? I am a teacher, and it would look funny if I wear it to work; however, I'll do whatever I have to do.

I have been taking D3 with K for about 3 years now.

nancibee's picture
nancibee
Posts: 59
Joined: Sep 2012

check out Evista for medication which is also used to prevent breast cancer recurrence Instead of tamoxifen. I have gotten lazy about other bone strengthening exercise since I started hiking with a backpack but I used to use a DVD called Skeletal Fitness. Endocrinologist told me to take Vitafusion Calcium Gummies and Kirkland chocolate calcium because the elemental calcium is twice as high as Citrical - need 1,500 mg/day. Careful with only using the Gummies though as tricalcium phosphate has laxative effect. 

 

I got my Debbie Rocker Walkvest years ago and I like it but I don't know if they are still available. Her website walkvest.com is gone.

 

Double Whammy's picture
Double Whammy
Posts: 2835
Joined: Jun 2010

I think the side effects from all bisphosphonates are scarey.  I was on Arimidex for breast cancer and just as predicted, I became osteoporotic.  I had previously been osteopenic.  My oncologist wanted to put me on a bisphosphonate.  My pcp said not yet.  We'll do it when we have to, but not just yet.  A while later, I wanted to stop Arimidex to see if it was contributing to my hair not returning.  I just wanted to stop for a while and see if I grew some hair.  Then I said I'd go back on.  Well, my oncologist didn't like that idea much, but she did switch me to Tamoxifen - and she said it would be good for my bones.  And it has been.  I am no longer osteoporotic.  I'm osteopenic again.  I also got and keep my vitamin D levels up - I take 4000 IU daily.  I also do weight bearing exercise.  I really hope I don't have to ever take a bisophophonate and will do whatever I can to avoid that.  BUT if I become osteoporotic again some day, I will consider it.  We do what we have to so we can keep doing what we want to.

I don't think you want to consider Evista or Tamoxifen to avoid a bisphosphonate.  Their side effects are scarey, too.   I take Tamoxifen because my breast cancer had markers that equate with a high rate of recurrence - I'm not interested in that.   I'm also not interested in breaking a bone from osteoporosis, so if  the time comes that I need to take a bisphosphonate, I probably would.  Risks vs. benefits and all that.

Good luck.

Suzanne

MMMT- SURVIVOR
Posts: 5
Joined: Feb 2015

For what it's worth here is my experience in dealing with this issue.  There are no easy answers, that's for sure!  I've been having scans since my mid-50's and have shown continued decline.  Started on Evista which worked at first but this drug only slows down bone loss, doesn't replace bone.  Four years ago I had 2 thoracic fractures and a vertebroplasty after a slight fall.  Going through chemo twice hasn't helped either.  Have been taking extra calcium for years.  After my last chemo in 2013 I started taking Algae Cal (plant based calcium) and Strontium Citrate (Strontium Bonemaker), purchased both through Amazon.  Recently had a scan and I am holding steady, no loss since the last scan 2-yrs ago.  I'm also trying to follow some bone building exercises called the Weekend Challenge http://saveourbones.com/?s=weekend+challenge which can be found on Vivian Goldschmidt's Save Our Bones website.  She focuses on building new bone through diet and exercise and is very anti-drug.  My regular obgyn recommended Prolia, an injection, but my primary was wary...what do you do if you have a bad reaction?  She said she usually recommends Fosamax, yes, it has risks because the bone it builds isn't "good" bone but sometimes there are no other options.  We agreed that I'll continue my current strategy and add more bone building exercises - esp for wrists, spine and hips - and then see about another scan in a year.  Hope this helps.

Fayard's picture
Fayard
Posts: 438
Joined: May 2011

Ladies,

 

Thank you very much for your input.

MMTT, I have a question. Do you take the Algae Cal and Strontium Citrate together, or one of them?

 

Gracias!

MMMT- SURVIVOR
Posts: 5
Joined: Feb 2015

Strontium Bonemaker indicates that you should not take at the same time as calcium or milk products.  My research shows the same.  Thus, I take Algae Cal in the morning/during the day and take the Strontium before I go to bed.  Please note that there is Strontium Citrate and Strontium Ranelate, the latter has been banned in the UK I believe.  It's probably a prescription drug over there.  Apparently has different properties and side effects than Strontium citrate.  Let me know if you need any more information. 

Fayard's picture
Fayard
Posts: 438
Joined: May 2011

Thank you so much for your advice!

So, which strotium do you take? I want to bring both names up to my next appointment on Wednesday.

Gracias

RoseyR
Posts: 471
Joined: Feb 2011

Fayard,

 

Do you REMEMBER me--RoseyR?  Another MMMT survivor?  If not, that's OK.  So sorry I haven't been on CSN for a year and a half; I went out to Durango, Colorado three sumers ago to see a naturopath named Nasha Winters, who is a sixteen-year-survivor of stage III ovarioan cancer and whose patients are exclusively gynecological cancer patients; I've been under her care since then, and her patients have their own web site; between my full time teaching job and taht web site, I haven't had much time to check back with CSN.

But I DO recall many members such as you, and Ro, with deep affection, and am so happy to see you are still alive and (I hope) faring fairly well.

I am feeling great after my diagnosis of MMMT in 2010 with no recurrence (as far as I know, yet), and feeling qquite good.

But having had those 25 pelvic readiaiton sesoions I occasionally feel a twinge a ikind of achy feeling in the top fo my righ tthigh, right under th hip bone, and wonder if I too am developing osteo after all that radiation.

Is it your understanding that it's the chemo--or the radiation--that leads to osteo four to five years after treatment?

Eager to her from you and to know, in more detail, how you ARE.

 

Rosey

 

 

flyerette65
Posts: 65
Joined: Oct 2014

Hi Everyone,

Two months ago I was having severe pain in my left hip, groin and pubic bone area.  I couldn't stand to put weight on my left leg for about 2 weeks and used crutches with as little WB as possible.  I then had an MRI which showed "intense red marrow edema" in the left pubic bone, all other areas of the pelvis were normal.  The orthopedist I saw wanted to know when my last PET scan was. I told her 3 years she said with my history it was surprising that my oncologist didn't order another one so I called oncologist. Long story short, he agreed I needed a PET scan but told me the orthopedist should order it because it was her idea, orthopedist said it was up to oncologist because he's the one who would follow me in the event of cancer. Since neither would order the PET scan I went to an orthopedic oncologist.  I am to go back and see him this week (and also the oncologist) and get a repeat MRI.  If the MRI still shows significant red marrow edema then the ortho/onc wants me to have a bone biopsy because of my history of USPC. He said he's seen patients get a PET scan, have an SUV of 1 and they had cancer which wasn't diagnosed til it was too late. Physical therapist wouldn't do anything for me after two sessions, she told me go back to ortho/onc and tell him you want the bone biopsy (I don't really).  Another orthopedist  (he was a total jerk so I didn't follow up with him)I had seen in October told me I needed to be on Fosomax because I had osteoporosis, my T score only shows osteopenia in lumbar spine so I don't know what he was talking about.  Also, I've had intense sciatica off and on since 2012 in the right hip, leg and foot.  It's been so bad today that I've laid on the sofa all day and have 3 novacaine patches on my back and bum. I take Vitamin D3, Calcium Citrate and Fish Oil.  I've also recently been diagnosed with Sjogrens syndrome (dry eyes, mouth, arthritis, etc). When I feel ok I do exercise, Pilates 2 times a week, Zumba, walking etc. Orthopedists think I have a stress fracture of the pubic bone and that's what's cuasing the red marrow edema but if the MRI doesn't confirm that, then other tests will need to be done.  I get fed up with seeing doctors, getting the runaround, etc.  Don't know what my plan of action will be if I don't get a good MRI result.  Has anyone else experienced a stress fracture for no apparent reason.

Fayard's picture
Fayard
Posts: 438
Joined: May 2011

Rosey,

Of course I remember you! I sent you a private message. Please read it. I would love to hear more from you!

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