I am desperate... what is your recent experience with prolia

Sig

Hi, i am quite desperate, I have been on fosamax for 5 years, (2008-2013 sametime as femara) because my bone were stable and I had completed my 5 years on femara the specialist gave me a drug holiday. So recently I had a bone density scan (2 years + later) and to my surprise i had a significant decreased, (despite that I no longer take femara and I have been doing 1 hour of physical training including weight lifting/bearing every single day, eating right) so my rheumatologist wants me to start prolia. I have been googling the net for info about this drug and this is nothing very reassuring, it seems that a lots of people have very bad side effects. However reading this forum it is more reassuring as it seems to have less peoples with bad side effect but the posts that I am finding are dating past several years, so I would like to know your experience recently with the drug, so I can make a better decision. Right now i have an appt with my doc on july 15th to get the injection but I am still unsure if I will go with it. so I have a few questions also if any of you can answer them along with your experience.

1. does the prolia drug stopped our bone to increase density naturally or we can still increase density of our bone naturally while on prolia and what happen once we stopped the drug, are we loosing the density we have increased with the drug. (look likes what happened with the fosamax I took).

2. I am also schedule for a root canal on July 8 (with endo) and the restoration (part 2) with the dentist on July 13, So the dentist gave me an antibiotic prescription (for 10 days) to start taking them one week prior to the root canal as a prevention. so can I have my prolia injection on the July 15, (shortly after my last pill of antibiotic)

3. I also have TMJ, does any of you has TMJ and does it get worse with prolia.

4. what kind of side effects you guys have with prolia, did any of you had very bad side effects and at what time did it start as I have been reading on the net that some of them got it with the 2nd injections and others that start like several months after the first injection. Anything serious?.

I really would like to heard from people who went through the same nightmare cancer trip than me. I am really desperate right now with all this, I don't feel living but just surviving, I just keep doing things to help me survive longer, i.e.: cooking healthy meal and exercises to help my bone and stay away from cancer, plus going to all kind of medical appts and now with the result of my bone that has decreased I felt like I did all this for nothing. I am really tired of this shit. I am just not sure if I should give a try to prolia or increase my weight bearing exercise to 3 hours a day, and if it would really make a difference. my bone density, went from (L1-L4) -2.2 to -2.7, and femoral neck from -2.5 to -2.9.

please tell me your experience with prolia. tks

Sig

crazy4carrots

Hi Sig: After 5 years of Femara, I developed osteoporosis in my left hip. I took Fosavance for about a year with no improvement (and also learning about the dangers of that dam* drug). I've been on Prolia for over 2 years now, and my last bone density scan (in March) showed NO OSTEOPOROSIS!

I can't answer all your questions, but I can definitely say that I have had no side effects.

Cheers, Linda

SpecialK

I have been on Prolia since early 2012. I was osteopenic prior to diagnosis of breast cancer, most likely due to a total hysterectomy/oopherectomy nine years before, at the age of 45. Chemo and six months of Femara worsened my osteopenia to the brink of osteoporosis. This was reversed back to normal measures after 18 months of Prolia, and I have maintained the benefit since then. I have had no side effects. I have TMJ, it has not worsened, and I have had relatively non-invasive (crown replacement and porcelain onlay) with no issues, but was advised to schedule all dental work, other than routine cleaning, at the mid-point between injections to minimize any unwanted issues.

My understanding of the mechanism of Prolia is that it is a monoclonal antibody that slows the removal of old bone and allows the creation of new bone to catch up. It differs from bisphosphanates which coat the bone to strengthen, potentially causing problems with elasticity. I take calcium and vitamin D on the instructions of my oncologist, and also exercise. I am not sure if the benefits of Prolia continue after stopping the drug, or if density worsens at that point. My doctor has indicated that I will be on Prolia as long as I am on an AI drug. Good luck

ICanDoThis

Well, Prolia has kept me stable for a couple of years now. The only other thing that did this was tamoxifen!

Sig

thank you all for your replies, i am glad to see that you do not have any bad side effects from prolia. I feel better knowing this ..., a little bit less stressed. I guess i will give a try to prolia, in the past week i increased my weights and yesterday i started having very bad pain in my left hip and today i can barely walk, it's so painful. i hope i did not make more damage to my bone. I am putting voltaren on it. I really dont understand why my bone has continued to decrease, maybe i should have stay on fomamax a litle bit longer after stopping femara

Sig

crazy4carrots

Sig, do give Prolia a try. There have been many studies done on Fosamax, and it is known to cause big problems in the femur. My sister-in-law was on Fosamax for about 5 years, and she suffered a femur break (in two places) just out of the blue while they were wintering in Mexico (her hip just gave out and she fell while walking -- the bone had deteriorated and could no longer hold her up). It was set there, but she had to fly back to Toronto via air ambulance and more surgery. Her Toronto surgeon said she was not the first person this had happened to and that Fosamax was, in his opinion, the culprit. That was about 8 years ago, and since then more research has been done to basically prove his theory.

Hoping your pain goes away soon and you can enjoy the rest of the summer!

Sig

wow crazy4carrots, I hope your sister-in-law recovered from her hip, this is my worst nightmare a broken hip as apparently it is hard to recover from that. yes more i think i will give a try to prolia as you seem to have very good result, I am schedule on july 15 for the injection, but before that I have to have a root canal done as I have been having pain to one tooth for a couple of years (my dentist keeps saying wait and see what happen) but now I asked him for a referral to an endo to get this fixed prior to start prolia has some days it is just draining my energy. So now July 8 is my root canal with endo then the 13th is with the dentist for restoration and if everything goes well I should get my injection on the 15th with my Family doc. I am really hoping that everything goes well as planned. My dentist told me I can have my prolia injection before my final tooth restoration (if I need a crown) as he will just touch the tooth but I will confirm that with the endo anyway.

Sig

Suladog

I'm getting a Prolia shot tomorrow. Even though I have moderate osteopenia and exercise every day. what I've read about the benefits of Prolia , i've decided to get a shot. My MO hasn't insisted but the idea of strengthening bone in a different manner than Fosamax, which I took after my first BC back in 1990 sounds good to me. My SIL who's treated at SK in NYC says it's no biggie ... So I guess I'll find out.

Sig

Hi Suladog, how was your prolia shot today? you're right there are some positive things also about prolia, the comments i got on this thread is encouraging, so I have decided to give it a try to prolia as well because i am quite scare to break my hip.

Sig

Suladog

Sig,

It was ouchy but other then that ok. The nurse gave it to me in the thigh since I've had two mastectomies in the last 25 yrs and no lymphodema ( very lucky) the doc said she didn't want to take any chances or cause any sort of problems . They had me wait for 10 minutes afterward just in case there was an allergic reaction. There wasn't

Also we talked about a new study that came out about two weeks ago which we had both read that was saying that Prolia and the other bond drugs may play a role in preventing bone mets

Sig

thanks suladog for the update. I am happy to heard about that study .. another good reason to try it out!,

Sig

lago

I've had 2 Prolia shots. No SE. Will be getting a density scan this October the day I get my 3rd shot. I was diagnosed with osteoporosis in 2013. Fosamax gave me reflux.

Suefit

anyone have dizziness with Zgeva shot? I just had my second shot and I am so dizz

Jerseygirl927

I do have osteoporosis, so not sure if prolia will help? It says for osteopenia, but since I have had 3 fractures already, will the prolia help? No one seems to know that answer? Also prolia can cause vertigo, so be careful, I am susceptible to vertigo, so am not sure if I should get the shot? That's my dilemma, 2 negative issues for me? Any thoughts gals?

lago

Discuss with your MD but have you tried Fosamax? I did that first but got acid reflux. Usually the next thing they will try is Reclast. If you don't go in that order you might have to fight the insurance. I know I did.

Don't assume you will get the SE. I was told I would have flu like symptons the next day and I had no SE. I usually get SE too.

Jerseygirl927

Lagos, fozamax caused my Gerd, so then a tonal, that caused it to, had to come off it, no trtmt now for about 5 years, it could be longer? Gyn is doing a thyroid test next to see about absorption levels? Then we can discuss options? Just want wish I knew if it will help since I am already fracturing. .?

Kathy044

Jersey girl it is only the latest study that is promoting Prolia to lower fracture risk for women on AIs who have normal or low bone density. $$$$ The benefit for those of us with osteoporosis is already well established, not that the absolute benefit is all that great if you look at the fracture numbers. I had my fourth Prolia injection in June, that will be my last one. I was on a bisphosphate for 2 1/2 years before that, switched after breaking my right wrist. Six months later while on the Prolia fell and broke my left wrist.

I feel that it was the anastozole along with chemo played a part in my falling due to poor balance and eyesight. I had cataract surgery recently - what a difference. Also now that I have been off the anastozole for a year I feel much steadier on my feet, hey, I have even started doing line dancing classes for exercise.

As for Prolia I am very concerned about risk of jaw necrosis over time, just had another two teeth extracted, so far so good, oral surgeon was very careful, ok so it is rare but I've been a nervous wreak and again put some of the blame on the chemo and anastrozole for dry mouth chemistry changes.

Kathy

Jerseygirl927

thanks Kathy, at 64 with my other fractured bones, hope the vitamin d and calcium, magnesium supplements will work better, not ruling it out, but have teeth issues already, so hope this does not make things worse, figuring all my options

edwards750

Good topic for me right now. Lots of great advice. I was DX with osteoporsis n 2011 which was also the year I was also DX with BC. I took a supplement drug early on but my Dr also prescribed Arimidex which was not a good idea given bone issues so she switched me to Tamoxifen.

The first bone density test was good but the most recent a month ago showed my numbers were slipping. ONC then prescribed a nasal spray. Not cheap - 58 a month but apparently most drugs for bone issues aren't inexpensive. I wanted to see if my insurance would pay for the Prolia shots but she said I had to try Fossamex first. Not doing that. Already have dental issues. Radiologist friend thinks SEs are exaggerated but not taking a chance. I've had acid reflux and vertigo.

Friends recommended magnesium. Taking that +calcium and Vitamin D. Walk a lot. It seems all the drugs can have some serious SEs. I stay very active. Constantly moving so maybe that will help.

Going off Tamoxifen at the 5 year mark - August 2016. Doesn't seem to be helping my bone issues so I guess I will find another med for prevention.

Diane

lago

edwardsa750 all the drugs have a risk of the jaw issue. Actually believe they are less with the pills. I have an issue with acid reflux but had to try the Fosamax first. Didn't take long to have the issue. Started in the first week. I just didn't wait for it to get bad. Still had to fight for Prolia. The insurance suggested I switch to Tamoxifen! My MD found for it and I got it. No problem with new insurance.

Jerseygirl927

I can't take tamoxafin because of blood clots, I've already had them so this is a no no drug for me. The jaw issue is frightening, and in explaining about the prolia and the side effects, the 2 major ones for me are the jaw and vertigo. So gonna see what the gynecologist wants to. Try, after he gets the blood work. I do have to say the fozamax worked but the acid reflux is a downer too. Which it gave me, so that's out. Hmmmm

edwards750

lago I know but I also had a problem with acid reflux. Also I had a blood clot when I was 16 but my ONC said I could still take tamoxifen because I have had 2 children,

Diane

MinusTwo

Anybody able to get a DECA bone density test paid for after only 1 year?

Most insurance pays every other year but the chemo caused my density numbers to tank. I have similar worries about teeth & jaws. Seven front teeth were damaged by dry mouth from rads & chemo and I've already had one implant. So my gyn recommended doubling the calcium & vit D again, and of course increasing weight bearing exercise. If this isn't doing any good, I really don't want to wait two whole years to find out my bone density numbers are even worse.

And does it make a difference w/insurance if the prescription for Prolia right out of the gate comes from an MO because of cancer or from a gyn? I did take biosphosphonates a number of years ago for severe osteopenia and they made a difference. Maybe I can count that Fosamax & Boniva experience for time in grade.

SpecialK

minus - I had a bone density a year after my last one - which made #4 since Sept '10, but it was ordered along with hip and lumbar MRIs looking for a reason for sudden onset hip pain last fall. The MO wanted the DEXA to check for avascular necrosis. My Prolia is ordered directly from my MO specifically for chemo/hormonal therapy induced worsening of osteopenia and my insurance had no issue. I am unable to take oral bisphosphonates due to reflux surgery in '95.

MinusTwo

Thanks for the info Special. MO and gyn have both retired the first of the year. New MO didn't have a clue. Guess I'll push it. Or maybe I'll just call Medicare?

lago

MinusTwo my MO ordered them every year I was on AIs no problem. Now that I'm being treated for osteoporosis she orders them every 2 years. They need to write it up properly.

luvmygoats

Minus - I have an ongoing problem with my MO office, separate/apart from this discussion. They attempted to schedule bone density prior to Prolia (I'm staying on the Fosamax at least until April 2016 which will be 2 year b.d.). The tech at the b.d. place said yes, I should qualify for an earlier b.d. due to osteopenia/Fosamax.

MinusTwo

Thanks Lago & Luv

NCDi

I am on the fence about Prolia, have been on Arimidex for just five weeks, my Bone scan showed osteoporosis (I am 64 so no surprise there) but I had a bone scan ten years ago and that also showed osteoporosis. I asked my MO to compare the two scans to find out exactly where we are.

Tried Fosamax ten years ago, not a good experience, and my MO is concerned that I am not up for Prolia.

I take Calcium/VitD twice a day, eat yoghurt and walk for exercise. Am feeling more energetic and stronger five weeks post radiation. I eat healthy foods, little meat and try and watch my weight so I don't stress my joints too much.

I would like to find out who may have experience with Prolia and if they would say it is worth doing - given the side effects.

Thank you!

SpecialK

NCDi - Fosamax and Prolia are two completely different drugs, and work by different mechanisms. Fosamax is a bisphosphonate and works by coating bones to make them stronger, but in some they can become more brittle and prone to fracture due to a decrease in elasticity from the coating by the drug. Prolia is a monoclonal antibody and works for post-menopausal women by slowing the old bone removal, which can accelerate as we age, and allowing the new bone creation to catch up and match the removal better. Because Prolia is a twice yearly subcutaneous injectable there is not the GI upset many find with oral bisphosphonates. I was osteopenic, but stable, for 10 years prior to diagnosis with breast cancer. My osteopenia worsened to the brink of osteoporosis after chemo and six months on Femara. After 3 Prolia injections over 18 months my osteopenia had reversed to normal density measurements at each measuring point. I have had zero side effects. The only precaution I take is having dental work done at the half way point between injections, but I can have cleanings any time.

mysunshine48

What is the thing about dental work? I need a space filled in in the back and a cleanimg. My MO wanted me to start Prolia, so how long should I wait after the filling?