Prolia did you take it

blackjack

I am looking to see if anyone has taken the drug Prolia for osteoporosis. My onc is really pushing this drug on me as I have bad osteoporosis. Would like to hear if anyone has taken this drug as it is so new on the market and if you had any bad side effects. Just trying to make a good decision about taking this drug.

BJ

cycle-path

The literature seems to indicate that it has the same SEs as the other bisphosphonates. I don't recall anyone here having mentioned that they took it, but there are many who've taken Reclast, Boniva, etc. You might want to read about what others have said about those. 

The only SE I've had from many Reclast infusions is much improved DEXA scores. (Of course that's really an effect rather than a side effect...)

slousha

Hi blackjack,

Last year before taking Femara I was at Endo first to see how my bones are doing. I  have had slightly osteopenia in my hips and beginning of osteoporosis on backbone. I got the prescription for bisphosfonate risendronat (Actinel) tablets to take 2 times in the months  Have had so much difficulties and stopped on my own. For a year being on D3, Calcium, exercising a lot, eating healthy my bone straightness improved a little - withouth any medicine.

Now my Onco would like to prescribe me Prolia. I'm sending you a pp about SE's. I really don't like to burden my body, We'll see!

Greetings Usha

Moderators

blackjack, there is a research report and analysis of the FDA approval of denosumab (Prolia) on the main Breastcancer.org site. There have been conversations about it too, here on the forums. To find them, just type Prolia as the keyword when you click the Search link near the top of this page.

Judith and the Mods

LtotheK

My doctor initially wanted me on Prolia after dermining the exact same thing as slousha.  After just about every test in the book, he determined I should be on Fosamax rather than Prolia (while I have osteoporosis in the spine, my other areas are osteopenic and I'm not losing bone at a rapid rate according to urine tests).  Prolia has a much better effect on bone building.  He was very supportive of naturopathic interventions, but from everyone I am talking to, it doesn't get you where the doctors want you to be most of the time. 

The issue for me was that Prolia is a much more serious drug on many levels.  I know the jaw necrosis is a serious worry, but it is actually extremely rare.  Every doctor has told me as much.  The BC.org site doesn't cover the other worrisome SEs of Prolia, which include high cholesterol and serious infections.  I was honestly very depressed about the prospect of taking it, and I really think it deserves a second opinion.

I also may try strontium, which does seem to build bone rather effectively (at least as effectively as the bios).

blackjack

Thank you girls for your input on this drug. I am not going to take it as it has too many side effects and also that it has not been on the market that long. These drug companies are pushing this newer drug on mds, but no one knows what the long term side effects are. We already go through so much with this disease....for me I am going the healthy route. Vit D, calcium , exercise and diet. If my DEXA is worse then I will rethink this situation. My osteoporosis is not from antestrogen drugs, I refused to take them but thyroid issue.

Thank you all for your input...wishing you all healthy bones in the future.

BJ

cycle-path

Blackjack, did you address the thyroid issue? Has it been taken care of? I have a friend who developed osteopenia because of a thyroid tumor. She had to have it removed.

blackjack

Cycle-path...no I am hyperthyroid. I had 2 biopsies for nodules both b9. Just checking blood levels every 6 months.How did you friend discover her problem and why did they remove it ?

cycle-path

I don't recall how it was discovered, but the tumor was causing her bones to leach calcium.

ariesrottie

Hi! Just had my first shot of Prolia on Monday. So far no side effects. Had one treatment of Zometia and I was sick for a week and a half with aches and pains. I will let you know. I have to have it twice a year.

Donna 

sam52

cyclepath and blackjack - I had ever-worsening osteoporosis despite taking Fosomax for 3 years whilst on an AI .......after several blood tests with an endocrinologist, it was determined I had hyperPARAthyroidism : it is the parathyroid glands which are the calcium thermostat and if one produces too much PTH (parathyroid hormone), usually because of a (benign) tumor, then the other three go to sleep and the end result is calcium leached from the bones. 

I had the offending parathyroid gland with its adenoma surgically removed and the other 3 are now doing their job again. It remains to be seen what my bone density is when I am retested in about 2 years time.Meanwhile I am taking Vit D, calcium and magnesium. I do not like the potentially serious side effects of the bisphosphonates, nor of denosumab (prolia), so I am steering clear of them.

blackjack

HI Sam52,

How did they determine it was your parathyroid gland? I have normal blood calcium levels and my Vit D is 40. But my TSH is very low. which makes me hyper thyroid. Did you have low calium levels?

BJ

sam52

Hi blackjack,

My serum calcium levels were slightly raised, but my PTH (parathyroid hormone) levels were high - this is indicative of hyperparathyroidism. It is always the PTH which rings bells ; you can have parathyroid disease with or without raised calcium levels.

Luckily for me, the adenoma showed up very clearly on a Sestamibi scan, and the ultrasound scan showed it in the same place too, so I was able to have minimally-invasive surgery.

Sam

etahbaz

I believe it is a CRIME to recommend PROLIA injection to anyone. I regret that my doctor pushed me to go and get this injection done without providing me sufficient information. I had it last week and since then I am suffering from itchy skin, severe upper and lower jaw pain, pain in my gum, ear....It is the drug company makes profit and doctors are using us as expriment.

cycle-path

etahbaz, that's an extremely irresponsible statement! It's true that people have adverse reactions to many drugs, but for every bad reaction there are many, many people who are helped by the drug!

You are NOT being used as a guinea pig. These drugs have been tested extensively and it is felt that the benefits for the majority of people outweigh the risks. I'm very sorry you have had a bad reaction, but it is very irresponsible to make the statements you've made. 

etahbaz

You don't have to force your thoughts and feeling to others as you did in your opinion about breast cancer treatment which I disagree with you in so many ways. I don't have to be rude and call you irresponsible.EVERYONE IS ENTLTLED TO EXPRESS HIS  or HER OPINION AND THEIR UNIQUE EXPERIENCE. Please in future, you practice a better language. 

YOU ARE saying about PROLIA that has been tested extensively!!! that is a joke. Please Do not mislead people. Ypour statement has no basis on factual data. This drug has been in Canada only for one year and I already heard from the real people used it and they all are unhappy. One I have met recently lost tooth..it has a terrible affect on Jaw bone called astronecrosis.Please be honest and not to use this path for lecturing people. It is not constructive.

cycle-path

Etahbaz, it is YOUR attitude that isn't constructive. This web site is a pleasant and harmonious place except for a handful of negative people.

ETA: if you don't like my posts, I encourage you to report me to the Moderators which you can do here: https://community.breastcancer.org/member/56097/message 

As for me, I've put you on ignore. 

etahbaz

I do not grant you a response.