Good/bad experiences with Prolia?

I was wondering if anyone on Prolix has noticed hair loss or thinning?

Sharon

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.

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

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

It can cause hypocalcemia. You should be taking calcium and vitamin D when on it.

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.

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.

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.

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.

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.

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.

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

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

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.

Maria