Talk with others about bone density, osteopenia and osteoporosis, and ways to keep your bones strong
Posted on: Mar 11, 2016 01:16PM
I will most likely be starting Prolia in the next couple weeks. I am 48 with osteo. I have tried Actonel and can't take it and have had two infusions of Reclast and have not gotten any improvements on my scans. The bone loss is getting worse. I exercise often and focus on weight bearing exercises, take Calcium ,Vit D and magnesium. My current endo sent me to another specialist and no one seems to be able to find a cause for my continued bone loss.
I was terrified to take the Reclast due to horror stories I found on-line but I did it and didn't have any side effects. I am now am terrified to take Prolia. When I go to askapatient.com, there are a ton of posts from people with debilitating pain, etc. I have seen a few positive posts on here about Prolia but am still scared. Given my age, I feel like I can't just ignore it, but nothing I am doing is helping.
Posts 91 - 120 (192 total)
Dec 29, 2016 02:12PM KBeee wrote:
My hair is really thin, but I've had chemo twice and am on Femera, so I think it's a combination of all of those. It was pretty thin to begin with, but it's even thinner now. But I am glad it's there!!!
Dec 29, 2016 06:37PM stellamaris wrote:
My hair loss started when I began taking Femara. I have only had one Prolia shot so far, so I think it is the Femara.
Dec 30, 2016 10:19PM Lenn13ka wrote:
I had my first Prolia injection in late September. At first I didn't notice any side effects but the last month or so I have had very intense joint and bone pain - mostly in the the hips and knees. I have been on Anastrazole since Jan 2016 so not sure if the pain is from that or the Prolia. I also have developed some areas of very dry skin ( which is definitely a Prolia side effect- never had a problem with that before) . My scalp and the behind my ears are the worst.
My second shot is due for March and am not sure I will proceed if I can't get this pain under control. Anyone else? Any suggestions? Thank
Dec 30, 2016 10:49PM muska wrote:
Lenn13ka, the symptoms you describe are typical of anastrozole side effects. If you had Prolia in September its side effects would be most pronounced in September and would subside in October, they wouldn't start three months after the shot was given.
Very dry skin is the result of estrogen suppression from anastrozole. Joint pain is one of the most frequent anastrozole side effects too
Dec 31, 2016 09:02AM claireinaz wrote:
Hi Lenn, I was on that drug and had to change to another because of the symptoms (modified) that you describe. As others have said, it is most likely from the Arimidex. In addition to hip pain, I had awful hand and finger joint pain, and mood swings that turned me into a monster woman. So I had to swap to Exemestane (aromasin).
Claire in AZ
Dec 31, 2016 09:05AM claireinaz wrote:
Another question: did any of you have to get your calcium checked before the injection or get labs? If so, what were they looking for? My NP doesn't know much about the drug, no surprise, but will be administering it, and says my calcium might have to be checked, or I might have to have labs? I had them done in Oct. for my regular oncology check up, and a DEXA in late summer that revealed mild osteopenia. Why more needle sticks and labs? Sheesh. Anyone? My oncologist who ordered the drug didn't say I needed to have them done. Maybe, although I would have to drive 45 min to her office in another city, I should have my oncologist give me the injection there.
Dec 31, 2016 11:12AM KBeee wrote:
It can cause hypocalcemia. You should be taking calcium and vitamin D when on it.
Dec 31, 2016 12:19PM MinusTwo wrote:
My OB/Gyn gives my Prolia and she requires a Vit D test in addition to standard blood work.
Dec 31, 2016 04:59PM Lenn13ka wrote:
Thanks for all the info everyone. I was kind of looking at the Prolia as the culprit as I was on Anastrozole for months with no problems at all. Maybe it has sucked all the estrogen out by now and problems are now starting.??? I was on Tamoxifen for 2 1/2 years with no problems except cognitive fog. I was psyched to get off of that drug but it did lower my cholesterol enough to get off a statin and also improved my bone density. Now I feel like a super old lady. I have a physical job and also teach skiing and both have been severely compromised the past couple of months. I can't figure out "why now"? Plus my cholesterol has sky rocketed since being on Anastrozole. ( or Prolia? )
I was on an experimental drug for 2 years ( Palbociclib) as part of a clinical trial. That was way easier than this! Might have to ask for a break and a switch...now I know why people go off these drugs.. Could never understand that before this...
Claire - I have extensive labs before injection of Prolia... I go to Dana Farber.
Dec 31, 2016 06:00PM stellamaris wrote:
clareinaz: I was told to take 1000 - 2000 units vitamin D and 600 mg calcium a day. I take vitamin D with some added calcium, and my DH makes me a latte every day and homemade yoghurt for breakfast, so I think that covers the calcium requirement. My bone scan showed osteopenia in the hips and osteoporosis in the spine. I have only had one shot so far, in November, and had no issues at all.
Jan 1, 2017 12:00AM MinusTwo wrote:
Before I ever had BC or any treatments, I had been taking 1460 mg calcium and 2000 IU Vit D for many years. I had worked my way from osteopenia back to normal. Then BC & chemo & rads did their number & I'm in real osteoperosis. So the Prolia. My calcium supplements are still at 1460 mg but the Vit D has been ramped up to almost 5000 IU.
Jan 1, 2017 08:43AM claireinaz wrote:
Thanks ladies, I'm ahead of the curve on Vit D, have been taking 5000- 7000 IUs for at least five years, and my MO checks my Vit D religiously once a year. She's really proactive about that. So far it hovers around 60-65, which my MO loves. I also get outside to exercise, luckily I live in No. Az where we have a lot of sun usually--and don't use sunblock until I've been out for 30 min.
I don't eat much dairy--I hover between being vegan and vegetarian-- though I will eat organic yogurt and rsbt-free cheese a couple times a week (varies depending on desire). My former gynocologist suggested I eat Tums (2 of the 1000 mg kind daily) to supplement calcium. I tried buying the calcium gummies and hated them. Thoughts?
I guess I'm so sick of being stuck and analyzed. My MO has labs from Oct. Do you think I'd need another lab? She said I could get the injection at her office instead of my NP, who doesn't seem to know much about the drug (which worries me a bit, too).
Claire in AZ
Jan 1, 2017 09:39AM muska wrote:
Speaking of labs to be done before Prolia injection my MO orders Basic Metabolic Profile, magnesium and phosphorus - to be done before the injection. The last two are ordered to make sure the baseline is fine b/c Prolia sometimes causes them to change.
On the topic of calcium, I was not advised to take any. It is my understanding, calcium supplementation comes with its own risks. I was advised to eat well, i.e. eat more foods rich in calcium and that should be enough. So far my calcium levels have remained normal.
Jan 2, 2017 01:20PM claireinaz wrote:
Good to know, muska. I'm so sick of taking more supplements (re calcium). I worry about my liver processing them all. I'm already taking enough, I feel.
Jan 24, 2017 10:51PM kkuziel wrote:
Just had my appointment with oncologist and I got the dreaded "your bones didn't look so good this time" on my scans. (8% loss in spine) He wants me to start Prolia. He would have given me the shot today, but my insurance won't clear it for 48 hours so I have time to research, and likely scare the crap out of myself. I'm of course most concerned about the jaw issues, but have been somewhat concerned as I've read some other things about pain in back and legs. I've been somewhat fortunate with Femara, well except for the bone loss. And really don't what to lessen my quality of life.Do most of you think the side effects are worth the gains.
Jan 24, 2017 11:19PM MinusTwo wrote:
kkuziiel - Take time to have any invasive dental work done first - extractions, implants. I have had two shots so far and no side effects at all. We're all different, but I've been really pleased.
Jan 25, 2017 12:20AM ChiSandy wrote:
I’m seeing my MO on Thurs. and telling her that if she won’t switch me from Zometa to Prolia, my PCP says he will (and can get the prior auth). Even if the auth is denied (and ProliaPlus says it shouldn’t be on my plans), I can get it for about $1K or so with a GoodRx coupon. (Several of the women in my monthly bc support group have, and one says her Medicare Part B covered it). But first, I have to shake this stupid sinusitis/laryngitis/bronchitis—biologics do weaken the immune system.
Jan 25, 2017 12:29AM MinusTwo wrote:
Yup Sandy, my Medicare part B has covered both of my two shots so far.
Jan 25, 2017 08:52AM conniehar wrote:
Prolia offers a co-pay program. They will pay up to $1,500 of anything over $25 that your insurance will not cover. You have to register first. Then once the shot is run through your insurance you can just send in a claim to Prolia. My insurance paid everything except about $200. I sent a claim to Prolia and they send me a reimbursement check for the difference minus the $25 co-pay. www.proliasupport.com
Jan 25, 2017 09:58AM MinusTwo wrote:
Connie - Thanks for the information
Feb 8, 2017 10:59AM GeorgiaRai wrote:
I'm scheduled for my 2nd dose of Prolia next week. I'll ask when I'm there but wanted to see if anyone else had experienced allergy symptoms like sinus congestion, clogged ears, drainage, etc. Mine has been almost constant in the 6 months since my first injection with the worst of it being my ears. I wasn't familiar with the term "ear congestion" until I went looking to see why my head was so foggy & full feeling; it's listed as a Prolia side effect. The only thing that gives me any relief (after my PCP gave me antibiotics, Zyrtec, Flonase & a cortisone shot) is Benedryl, but I can tell as soon as it starts to wear off.FYI, my MO said I'd get Prolia for no more than 3 years, even though I'm supposed to stay on Aromasin 7 more years.
Feb 8, 2017 05:48PM MinusTwo wrote:
Georgia - sorry to hear about your congestion. No, I didn't have any side effects from either of my first two shots. Wonder if you have an allergy to one of the filler ingredients?
Feb 8, 2017 07:59PM KBeee wrote:
I've had some congestion and a sinus infection, but it may or may not be related. It does make you more susceptible to infection
Feb 8, 2017 08:44PM MinusTwo wrote:
Interesting KBeee. I didn't know it makes you more susceptible. So maybe I shouldn't run errands in & out of ten stores on the way home. Thanks
Feb 8, 2017 10:45PM - edited Feb 8, 2017 10:45PM by KBeee
I think it acts like steroids and makes you a bit more susceptible ..... Nothing like chemo.
Right now we have 6 people ot sick at work today and I am not one of them (knock wood) so it's can't be too bad on immunity
Feb 9, 2017 12:50AM ChiSandy wrote:
I actually had “ear congestion” (serous buildup behind the eardrum) thirteen years ago after a cold. I also experienced distortion of certain sounds and pitch discrepancies between what I heard via my L & R ears. Nobody could explain it—a neurotologist tested my acuity, pronounced it “normal” (he didn’t test above 8kHz) and said I’m “too picky about pitch” because I’m a musician!!!! He also declared that as a "diagnosis of omission” (e.g., having ruled out other causes) I had atypical Meniere’s Syndrome (“atypical” because I didn’t have nausea or vertigo) and prescribed a diet low in sodium and sugar, and absolutely no alcohol or caffeine (and warned me to avoid drinking any “brown stuff,” even decaf coffee). I ignored that and simply increased water consumption & restricted sodium. He had also advised decongestants, but as a hypertensive patient I also ignored that. The serous buildup resolved pretty quickly; but it took using an equalizer to listen to all recorded music, Vitamin E, antioxidants, manganese and a Medrol dosepak to clear up the distortion and pitch discrepancies.
So I’ll “keep an ear out” for “ear congestion” after my Prolia shot. (It’s one of the few SEs I didn’t get with Zometa).
Feb 15, 2017 10:54PM Mariangel43 wrote:
Ladies, I have been reading about your problems with this or that drug. I already have osteoporosis, sinusitis and broken bones. Still working and trying to doing my best without overexercising. My MO says he will give me a biophosphonate but I suffer of gastritis and problems with stomach and intestines. I was sent to a rheumathologist for treatment. I still don't know which treatment is best for me. Now I am having my dental work done before any shot or infusion of whatever they will put me on. I am terribly allergic to many things and I 'm scared of any new procedure.
I already have joint pain and myositis and these will worsen with anything. I hate being sick. I've tried to put on a happy face since last year but I am getting tired. Today I'm sleepy but mostly I suffer from insomnia since June 1, 2016.
Feb 18, 2017 08:56PM stellamaris wrote:
maria- I feel for you. It is so difficult not felling well and having to go to work. You are not alone. I have rheumatoid arthritis and have been on immunosuppressants for 10 years. I think that is what allowed the cancer to take hold, but maybe it was the wine. In any case, I am now on letrozole and Prolia (bisphosphenate) and have so far no joint issues. I am 67 in May. The worse SE I have is weak bladder and fatigue. I have been on letrozole for 1year 2 months. Don' be too nervous about the meds. Just see how they affect you, and if they don't work well speak to your MO about alternatives. It may be easier than you think. Good luck!