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Prolia
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canandaiguany posted:
I have severe osteoporosis. My doctor said Prolia was the only
drug to take.
It had severe side effects. Initially it caused horrible back pain,
lfushing, and forgetfulness. I thought I could handle it if it
would save my bones.
After the third infusion I got shingle like pain on my arms and
back so severe I could not sleep. Agony. No rash, just
intense pain. I cried daily it felt like someone had taken
a potato peeler and took off the top layer of my skin.
My doctot told me to disconintue it and said I am his only
patient who had this reaction.
Now I am taking nothing. He said that reclast gives you
a 2% chance of spinal fracture help .. maybe.
Lots of side effects from reclast. He said that I could
just take my chances although I have a 16% chance of
a fracture.
After all was said and done the Nurse practicioner told me
that Prolia does not work and forteo seems to be the only
drug that does .. however I am on a blood thinner and that
is not a good combination. I am taking D and Calcium
My bones got WORSE after three Prolia infusions.
I am sick at heart the prolia may cause other problems.
I had to have a root canal a month after the last injection
and am on alert for jaw necrosis. This is a nightmare.
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Anon_128925 responded:
Funny, my first time to the site and see pertinent
information.


My husband has osteo. and the doctor wants to give him
prolia. I am scared to death and we are going on with it.
I looked over the information on the drug and if you
look at the people who took prolia and the ones
that took the sugar pill, there is not much difference.
A lot of people have these side effects anyway.
However, I would be interested in hearing from
people who took prolia and had good results.
 
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canandaiguany responded:
From all I have heard from friends in my age group
Advanced osteoporosis... have seen no favorable
results and then my doctor tells me forteo is the best.
Another doctor told me zometa but quite frankly
the other doctors I talked to were not optimistic
about any of these bone drugs... my internist
and my oncologist friend said it is a lot of grief
for very little or no results and who knows what
side effects can happen as it has not been tested
long enough. Dental work is another issue.
Very sad about this....
 
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bonebabe responded:
What bones have you broken?


What is your T-score?


Are you on any medications for an inflammatory or other chronic illness?


Did either of your parents break a hip?


How old are you and how old were you when you went through menopause?


How was it determined that you have a 16% chance of fracture?


When you say your bones got worse after 3 infusions, what were those numbers, not the T-scores, but the BMD and LSC? I'm assuming your two DXA's were done 18 months apart if you had 3 infusions?


Have you used any osteo medications besides Prolia? The recommendations from the ISCD are that Prolia not be used unless all other osteo meds have been tried.


Forteo is a good choice for people with severe osteoporosis as defined by having a T-score of -2.5 or greater along with a history of non violent fracture(s). It is the only med that will grow new bone. It is truly a miracle drug. Your Coumadin can be adjusted.


Reclast is also a good drug to take after you finish the full (2 years) course of Forteo. It will strengthen your new bone.


Put away your concerns of jaw necrosis. The only documented cases of that happening because of bisphosphonates was in nursing home patients who were already health compromised and were given IV Fosamax.
Jaw necrosis happens to people not on the meds too. The bone will grow back should you have a problem. It just returns more slowly.


Your doctor sounds like a pompous jerk. I'd look for a rheumatologist who specializes in osteoporosis.


Doing nothing is not an option for you.


Go online to the National Osteoporosis Foundation's website (www.nof.org ) and order their booklet "Boning Up on Osteoporosis." It costs $5 and should become your new Bible. We use it as a supplementary teaching tool in our osteoporosis rehab classes in the osteoporosis center where I work. It has answers to questions you haven't even thought to ask and will provide you with a wealth of information.


My advice? Forteo along with 1200 mg of calcium and 1000 IU of Vit D daily and walking at least a half hour each day.
 
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canandaiguany replied to bonebabe's response:
Thank you for your input. to answer your questions
No broken bones for me
Parents never broke hips but mom was diagnosed with
osteoporosis when it fact it was multiple myeloma and
found out 2 days before she died. I am checked for it
yearly.
Doctor never told me T-Scores just said severe osteoposis
and 16% chance of a fractrure.

I have GERD and have had esophageal strictures that
were ballooned out.

medical conditions are AFIB, AFLUTTER 1st degree
AV block. Have had heart restarted a few times. .
and many hospitalizations.

Hypersecretion of bile after gall bladder removal.

menopause at 57 .. no symptoms .. just stopped.

saw 5 endocronoligists... all said prolia .. my internist
is totally against bone meds as is my oncologist
friend my late husband was a doctor and he saved
his life and told me to trust him before he died.

I take 4000 calcium a day
and 3000 D3 a day.
Walk 1/2 hour a day
Drink Milk eat cheese and cottage cheese and D containing
foods.

Drugs I take are Propafenone, Dilitiazem, Prevacid,
warfarin, Ativan.

Doctor told me Forteo was not an option because of
my heart. I am on strong (very high doses) for my heart.

I am 68 and very anxious and usually spend 5 months
in florida but this year some illness in the family
kept me from going.

I think I answered your questions. I am not good
at this...

My doctor said I should try Reclast but after all
the symptoms I have read about it .. and the
frightful experience with Prolia .. my doctors
say and 3 others ... that the pain with reclast in the
beginning is excruciating and then goes away
and feel I can't handle it and said for a less
that 2% chance of MAYBE stopping the bone loss
I am taking more risks taking the drug.

I need a lot of dental work. I have two wisdom
teeth that are impacted at 68 and no oral surgeon
will touch them...

I am in a quandry. I appreciate your help.

I get so scared that I wind up in ER a lot with
heart issues. I have no family at all.
Not sure how to proceed.
See the endocronologist in May for my decision
he says.
I don't know what to do.

Warfarin has been a big issue as it is never stable
although I have eaten the EXACT same meals
every day for 7 years. EXACT (boring as hell)
it fluctuates all over the place ... do not understand
why,, and doctors worry about clots.
appreciate your help or any help ... I am scared
and sad about this whole thing. ,
Right now my ankle is filling up with fluid as the day
goes on and see a doctor next week.

It seems it is always something .. inside I feel vital'
but my body betrays me.

Thank you ... so much.
 
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bonebabe replied to canandaiguany's response:
I can certainly see your hesitancy and confusion.


First I will tell you that you do not have a clinical diagnosis of severe osteoporosis. You had to have broken a bone in order for your osteoporosis to be classified as severe.


Next, I'd ask the doctor for my T-scores. You should know your numbers.


Then I'd ask him how he determined a 16% chance of fracture. I suspect he's looking at a FRAX score; however, in your case it would not be a valid result. The reason for that is that FRAX is just another method of determining whether or not to prescribe osteo drugs. It is a risk formula for people who's T-scores are in the osteopenic range only and who have never been on an osteo medication.


To use it on someone with your history of med use and possible osteoporosis is useless. Besides, anyone with a T-score showing osteoporosis (-2.5 and below) meets the guidelines for treatment.


Now calcium. You say you take 4000 mg/day. I'm positive you aren't absorbing that much. It would be nearly impossible to and you'd have to watch the clock and take it at scheduled times. Taking more calcium doesn't help, in fact, it can pose a risk to your body.


You need only 1200-1500 mg a day. The body can only process 500 mg or so at a time. You need to give it several hours before ingesting anymore. So, for example, if at breakfast you had a calcium fortified cereal of 1000 mg, with mild of 350 mg, maybe a piece of cheese toast on calcium fortified bread that would be about 400 mg, along with a glass of OJ - another 300 mg. You would think you were getting about 2300 mg just at breakfast. Wrong. You'd get the benefit of 500 mg. The body would excrete the excess in your urine.


Now the meds. You have to weigh your risk of fracture against the risk of any type of medication. Right now, we don't really know what your risk is.


You don't have a first degree relative who had a hip fracture.
You aren't taking any drugs that would compromise your bones. You didn't go through an early menopause and most importantly, you haven't fractured yourself. The only thing we don't know is your T-score.


With your history of GERD, my suggestion for you would be the Reclast. Any symptoms shouldn't last more than a few days. The drugs do have a proven record of reducing your fracture risk. That is their purpose, not to rebuild your bone. (except Forteo)


You can go back and forth with this all day long, but the bottom line is if you have a compression fracture - there is no second chance. It is a lot more painful than any side effect of a drug and it is a lifelong pain. There is no correction of this. And once you have one, you are twice as likely to have another.


Have you lost any height? With your DXA did the tech do a Vertebral Fracture Assessment? It's simply another scan done at the same time, but it looks at the entire length of your spine. It can detect any possible spinal fractures you may have had that might not have been recognized. More than 1.5" of height loss is a red flag for this.


Go on the NOF site. They have a good FAQ section. The National Osteoporosis Foundation is the gold standard of all things osteoporosis. Just look around the site.


68 is not old. My mother is 88 and has had two fractures, is a breast cancer survivor, took Actonel for 10 years and last year went ziplining in Costa Rica. She also delivers Meals on Wheels to "old" people.


And don't worry about the dental issues. I think most of the hype from dentists is CYA anyway because the drugs stay in your body for 10 years!
 
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canandaiguany replied to bonebabe's response:
OMG you have a wealth of information and a lot
of questions I don't know the answers to.
I just had spinal exrays and they were fine .. thank God.
I don't know the T-Score.
I have lost 2 1/2 inches in height.
I am afraid I did not know what questions to ask
and actually afraid to hear the answers in a way.
IF I could hear. Severely hearing impaired.
I usually take someone with me.
Ashamed to admit when I hear bad news my heart
goes out of rhythm and I wind up in ER but I am
getting more scared NOT to know.
But the anxiety is probably going to kill me first.
When I see my doctor next week .. sadly not the
bone doctor but my internist I will see if he can
give me the T Scores and any other information.
I wish I could calm down but I am a nervous wreck
over this .. maybe everyone is. Appreciate your
help and input ... very much!!!!! Will keep you posted.
 
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bonebabe replied to canandaiguany's response:
You can request your bone density report from the place that tested you. I work in an internationally accredited osteoporosis center located in a hospital. Our patients can either get their results from their doctor or go by the hospital's medical records department and get a copy themselves. We always tell them that after they've been given their results they can call us with any questions and we'll go over the report with them.


Spinal x-rays do not give the same information as a VFA (Vertebral Fracture Assessment). The technology is different. The VFA can locate fractures not visible on a standard x-ray.


It's time for you to take control of your health. Denial isn't productive and the anxiety of wondering will be detrimental to your health. Knowledge is power and you need power to continue a fulfilling independent lifestyle.


So get your DXA report, get the "Boning Up on Osteoporosis" booklet from www.nof.org , reduce your calcium intake (it can also mess with your heart if you get too much), continue your walking and talk with your doctor about Reclast. You might also want to ask him about a referral to Physical Therapy for a balance assessment - with a hearing loss this is often recommended to reduce falls - and instruction in ADL's - Activities of Daily Living.


If you don't practice yoga, that might be something that would be of immense help to you. However, you would have to let the instructor know that you have low bone density and could not do any of the moves that required bending forward from the spine or twisting of the spine. The balance strengthening and stress reduction would be great though.


Good luck to you. I don't think you're as bad off as you seem to think. You have a lot of positives, You just need more information.
 
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canandaiguany replied to bonebabe's response:
Once again thank you. I wrote to my doctor on
My Chart regarding my scores and will let you know.
I do know that I have been to 4 endocronologists
and they all said I am in bad shape ... one in florida
also. So bad that the nurse came over and hugged
me when I walked in the office (I did not know her)
(in florida) and said "I feel so sorry for you"
I wanted to kill her.

Every doctor SCREAMED at me. All of them
and told me 'take a chance' and I did... but
was reduced to tears.

I am concerned about what you told me about the
tums affecting my heart!!! I see a new cardiologist
the middle of this month as we just moved from
Rochester, NY to Canandaigua, NY and want
doctors here.

I have been to a center like the one you are working
in. I waited 6 hours in the waiting room and waited
2 years for an appointment. When I finally got in
the woman talked to me and she was pushing
drugs although I have GERD the new drugs were
not out yet. I asked to talk to the doctor with whom
I had an appointment and she said "oh no, you can't
see the doctor ... you need an appointment for that.

I went back 4 months later... first appointment and
this time waited 4 1/2 hours and I saw the same
tech and she said the doctor was not there.
I was so upset and never went back. This doctor
has a really good reputation... too bad your can't
see here. There were about 85 women in the
waiting room .. so I went to the endocronologists
and quite frankly do not or did not like any of them.
the last one who 'gave me the verdict' of my scan
I was shocked and cried and he told me to see
another doctor. I did and this one was better but
when he saw that the prolia did not work he did not
want to see me again and pawned me off on the
P.A. who told me to start the Reclast in may.

You are very intelligent and help a lot of people
in these discussions I am sure. Once I get those
tests back I will let you know. I just know that
when I had my bone density test the girl at the
clinic looked at me in horror and I got really scared.

Denial is a stage you go through I beleive .. I am
trying to take charge of things now. It is difficult
when you don't have family and no one to help you
who loves you.

I don't drive as I am too weak to shift from park to
drive and have to depend on others and it can only
get worse.

I appreciate all your input and knowledge and will
get back to you when I get the results.
 
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canandaiguany replied to canandaiguany's response:
Hello... I got the results from the doctor's PA
via my chart today.
My T-Score is -3.5 in the spine and -2.9 in the right
femoral neck.
No other test was done.
Should I be worried? Not exactly sure what this means.
Again... Thank you!
 
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canandaiguany replied to bonebabe's response:
Hello... I got the results from the doctor's PA
via my chart today.
My T-Score is -3.5 in the spine and -2.9 in the right
femoral neck.
No other test was done.
Should I be worried? Not exactly sure what this means.
Again... Thank you
I tried to post this but was not certain it was going through
to you...
but since I wrote it .. did some research and it seems
I am in fact very bad off ... I got so upset I threw up..
and still nauseated. In a way maybe I was better off
in a fool's paradise. I think I am going to check out
soon after reading the TScores.
 
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bonebabe replied to canandaiguany's response:
All this means is that you have osteoporosis. It may make you feel better to know that more people with osteopenia (-1.1 to -2.4 T-scores) fracture than do people with osteoporosis.


The only risk factor that I can see based on the answers to questions that I asked is your T-score. You don't have a family history of fracture, you haven't fractured, you aren't taking any high risk medications and you've been on osteo meds. All good.


What you also need to know is that stress produces a hormone called cortisol. This can be detrimental to the bones. I think you should seriously consider yoga, meditation/relaxation tapes, relaxation breathing or Xanax.
You are waaaaay too stressed out about these numbers.


For sure you shouldn't be doing any forward bending or twisting of the spine or any crunches. There are a lot moves you can learn that can help you avoid a compression fracture. If you haven't ordered the booklet from NOF that I recommended, do it now. Living alone can be scary at times and this information you learn can help you remain independent for years and years.


You also need to be on a medication. Your only options due to your GERD are Reclast and Forteo. I know you said you couldn't do Forteo because of your heart problems, but I think it bears a closer look.


Also look for an osteoporosis support group in your area. That information too is on the NOF website. If you don't see one listed there, contact your local hospitals or senior centers and ask if there's one. If not....form one yourself. You could be doing many people a great service by doing this. There's a link on the NOF website about how to do it and they supply all the information. It would help you tremendously.


Just another note of encouragement...we had a patient who was in her mid 80's. Cute as a button. Little lady. Her T-scores were the lowest we'd ever seen and we've been in operation since 1992. Her spine was at -7.2! I didn't even know the machine would test that low. And do you know, she'd never had a fracture? We wanted to wrap her in bubble wrap and offer her some orthopedic shoes. She wasn't worried. She came to our rehab classes. Made a few adjustments in her movements and started doing some balance exercises. She's still coming around to say hello.


That reminds me of another suggestion for you. Instead of carrying a shoulder bag or regular purse on your arm, start using a backpack. It naturally aligns the spine, helps your posture and balance and frees both hands to break a fall should you stumble.


Now, feel better and get cracking making new friends with that support group. Show them your new backpack. You'll be the hit of the party
 
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canandaiguany replied to bonebabe's response:
Dear Bonebabe,

You are a doing a wonderful thing answering questions
on this discussion site.
I learned more from you in these few sessions than
any other doctor has told me.
I am deeply appreciative for all your help and encouragement.
I am going to take your suggestions... talk to my
cardiologist next week about Forteo and get in a
support group.
Thank you SOOO much!
Marilyn Canandaigua,NY
 
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bonebabe replied to canandaiguany's response:
 
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jigger_b replied to bonebabe's response:
A newbie"026after two stress fractures in six months (one a left foot metatarsal and a second in the right foot talar neck), I was suggested by my orthopedic surgeon to have my parathyroid checked"026it is just fine. My thyroid crashed last year and I've been on Synthroid for nine months — all is good there now. It had been five years since my last DXA so this was also done. Yep — T-score is 2.9 with the L1 of the spine at 4.0!


It's been suggested by my GP that I take Prolia and am now going through the motions to have my insurance agree. I did take Fosomax for about 4-6 weeks five years ago. I felt toxic and nauseous and I am not one to ever be ill. I stopped that stuff and my GP wasn't concerned to place me on anything else.


I take 1200 calcium citrate a day and 2000 vitamin D. I eat mainly veggies, salad, beef, chicken, and fish. Not one for fried foods and have pretty much never drunk soda. I drink 3-4 cups of coffee a day and enjoy red wine on the weekends. I have digestive issues with dairy (yogurt & milk) so I eat very little other than cheese as a part of meals and egg dishes.


I am 59, in decent shape weighing 150, work way too many hours, and am 5'5" and getting shorter.


I have an appointment in a few days with an endocrinologist who specializes in osteoporosis. This is for a second opinion for treatment options and to hopefully get guidance for the lifestyle changes I must make.


What might some key questions for the doc? What are some other suggestions you could make in general? What other info might you need to know?


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