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 61 - 90 (192 total)
Jul 22, 2016 10:07PM MinusTwo wrote:
You can read all sorts of info about hair & eye lashes on the "hair" thread. Also on chemo threads or hormone treatment threads.
You can google Latisse. I used it through my chemo. It is very expensive but I think it helped me keep some of my lashes & brows.
As far as I know hair loss is not a side effect of Prolia.
Sep 15, 2016 12:40PM - edited Sep 15, 2016 12:41PM by LizM
I took 7 1/2 years of Fosamax and one Reclast. After 10 years of Femara, I have now gradually declined (osteopenia in 2007) to osteoporosis. Oncologist immediately took me off Femara when he found out but I had just completed 10 years so I was going off anyway. My endocrinologist has given me the choice of another Reclast or Prolia. Since I have taken bisphosphonates most of the time while on Femara, I am use to them and to the side effects. Plus I feel like they have provided me additional protection against a recurrence along with Femara. Prolia is different and I am a little nervous about it. Has anyone gotten an infection as I see it listed as a side effect? My white blood cell count hovers just under normal around 3800, and I am a little worried about infections.
Sep 15, 2016 12:59PM LizM wrote:
Also, my endocrinologist told me I only needed 1,000 mg of calcium and 1,000 of D3. I asked her why I always read that one should take 1,200 to 1,500 and she said that the amount to take is coming down with latest research. She also told me that too much d3 is not good for bone health. My vitamin d test was at 78 and she told me that was too high. She said too much vit d makes the bones porous. She told me my vitamin d should be around 50. I am trying to get my 1,000 mg with food due to having GERD and taking h2 blockers and sometimes PPIs. If I can't get my 1,000 with food, I take calcium citrate to make up the difference. I eat organic dairy to stay away from the hormones which are not good for breast cancer.
Dec 6, 2016 02:09AM Shelly52 wrote:
Greetings! It's been awhile since we talked Prolia. I just had shot number 2 and all is still well for me. Wanted to check in to see how all of you are doing. I just reread all of the posts on this thread. No one complained of Prolia side effects. Is that still the case? I mistakenly googled "Prolia side effects" after I got my shot. That was pretty scary reading. I don't recommend it. It's great to see that this group has had positive experiences.
Hoping you are all doing well!!!
Dec 6, 2016 09:07AM MinusTwo wrote:
Shelly - thanks for the update. I will have shot #2 in January.
My biggest fear is ONJ. I had a crown completed last spring before I started the shots. Unfortunately, he had to go too close to the roots to try to get out decay and I ended up having a root canal last week. Four roots on one tooth!! I hope this works since I sure don't want to think about extraction.
Dec 6, 2016 09:13AM KayaRose wrote:
Shelly52, Good to hear you had your 2nd shot and all is well. I'm due for my 2nd shot in January. So far, no side effects and hoping it stays that way - I have enough SE with Arimidex. Don't need any more! I was really worried about the jaw bone side effects. After chemo I had to have 2 teeth removed and a bridge replaced. Did all of that before the Prolia shot and haven't had any other issues so far.
Dec 8, 2016 12:57AM Shelly52 wrote:
Indeed that jaw bone stuff is nothing to mess with. I recently had a crown, too and discussed it with my Dentist. I was glad to see that he knew all about it - it's causes, etc. He assured me that my crown procedure was safe. I understood him to say that when there is something impacting the bone such as an implant, it can be problematic. The bone has trouble healing, etc etc. Here's hoping none of have to deal wit him that!
Did you all have a dexa scan prior to starting Prolia? I did and it showed some osteopenia. I'm wondering when I can get another scan to see if the Prolia is working.
Dec 8, 2016 01:02AM SpecialK wrote:
shelly - usually DEXA is done every two years, and it may take at least four Prolia injections to see improvement. I have been getting Prolia since 2012 and have had three DEXA scans done - I saw improvement, back to low normal density, after two years but have not seen improvement beyond that - have remained stable.
Dec 8, 2016 12:42PM conniehar wrote:
I am scheduled for my second shot in two weeks. No issues with the first shot although I had a long period where I felt like I had a constant yeast infection. That has gotten better in the last month so I wonder if it is related as they say this shot affects your immune system. I googled Prolia and agree - it was not a good idea to do that!. Glad to hear everyone is doing well.
Sharon - I didn't think there were a maximum number of shots allowed on Prolia. I know there is on Forteo.
Dec 8, 2016 02:35PM KBeee wrote:
I got a rash after my last one (which was my second). I did not get one the first time. I realized that the first one was spring and I take allergy meds then. I took Zyrtec for a few days and it went away. Other than that, just an increase in acne
Dec 9, 2016 02:19AM - edited Dec 9, 2016 02:36AM by Shelly52
Thanks for the helpful info.
KBee -good thinking on the antihistamine. It looks like you have had a rough go of it. I can only imagine what you must have thought to have to go through chemo a second time. Ugh. That AC-T regime is a powerful one and here's praying that it zapped those pesky C cells once and for all!! Good for you for making it through. May I ask how you spotted your recurrence? Sorry for my ignorance-- is a Ki67 test the same as an oncotype? And lastly, are you on Femara or another AI now and if so, how are you tolerating it?
Neighbor to the north,
Dec 9, 2016 07:33AM - edited Dec 9, 2016 09:47AM by KBeee
Hi Shelly, Thankfully I tolerate chemo pretty well, so I had an easier time than many do. I found my recurrence myself. I found a lump, which was in the same place as my original lump. It was between the pec muscle and the skin. My doctor was "sure" it was scar tissue, but thankfully I requested a biopsy because it felt just like my original cancer.
Ki67 was reported with my pathology. Oncotype was different; it was used to help determine the benefit of chemo.
I am on Femera now. I have been on it for a year. I have quite a lot of bone and joint pain. I am not sure if it is Femera or what, but my hip and ribs always hurt! They did a bone scan which was clear though, so I just put up with it.
Dec 9, 2016 08:39AM muska wrote:Greetings to all. My 2nd Prolia shot is scheduled in January. I was told I am on it for two years. After the first shot I felt increased pain in my feet for about a month. I feel pain in my feet when I get up in the morning and it takes less than a minute for it to go away - that' my usual normal nowadays. After the first Prolia the pain got stronger. If I get it again I will try antihistamine for a couple of days.
Dec 9, 2016 11:02AM SpecialK wrote:
smo - my MO said I will be on Prolia as long as I am on letrozole. I started in early 2012, so have now had 10 injections. I did have a Biotheranostics Breast Cancer Index test done a year ago which is both predictive and prognostic and an indicator as to whether to stay on anti-hormonals beyond five years - the test was done when I was at the 4 1/2 year point and done to help determine whether I should stay on AI drugs. This test indicated I am at high risk for recurrence, but receive low benefit from anti-hormonals, and roughly 10 percent of patients fall into this category. My MO has asked me to stay on letrozole as long as I can tolerate it, even though I profile as low benefit, because low does not equal zero. I have not recurred despite the test result, and he doesn't want to change what seems to be working so far. I did have a PET scan done 6 months after the BCI test, and it found me to be NED for now.
muska - were you given a reason for stopping at two years? It often takes that long to see improvement, but my understanding is that if you stop you may reverse back to the density you had when you started.
Dec 9, 2016 11:59AM KayaRose wrote:
SpecialK, I'm wondering why you had the BCI test done. According to the info about the test presented on this site, it is for node negative and HER- negative patients. Did your MO say the test results would be accurate even if you don't fit into these two indicators? Just curious. Thanks.
Dec 9, 2016 01:33PM SpecialK wrote:
kaya - just as Oncotype Dx was initially used in node negative patients, then was adjusted for those with 1-3 positive nodes, Biotheranostics has indicated the same. If you look at the healthcare professionals section on the Biotheranostics site you will see that it is now recommended for those with 1-3 positive nodes. Often the initial recommendations for who the test pertains to are based on the trial data used to formulate the test, then they broaden the patient inclusion as more actual use data is gathered. This is why my MO ordered it even though I was node positive. As far as the Her2+ piece - I believe that informs the prognostic risk aspect - and I expected to be high risk. To my knowledge there is not an exclusion for Her2+ patients like there is for Oncotype Dx - I can't find any info to support that other than what it says on BCO. Study data from the University of Wisconsin and presented at ASCO in 2015 indicated that the BCI test shows more Her2+ patients have a test result with high recurrence risk (as expected), they also have a high drug benefit result as well. Her2+ patients have a higher percentage that may derive more benefit from extended endocrine therapy than Her2- according to this data.
Dec 9, 2016 04:41PM KayaRose wrote:
SpecialK, Thanks for the info. Sounds logical the test would be opened up to more categories once the data started coming in. I'm a year and a half into my anastrozole and am glad to hear the test would be an option in my situation when the time comes.
Dec 9, 2016 05:22PM muska wrote:SpecialK, I didn't ask why 2 years. I learned not to look too far ahead. But my guess is, results if any will be seen in two years, negative effects if any become more pronounced after two years.
Dec 10, 2016 12:56AM ChiSandy wrote:
Against my (and my PCP’s) better judgment, I did get a Zometa infusion back in August. Never again! It took them 5 stabs (even using an Accu-Vein lamp) to get the I.V. started, it hurt with each pulse until the bag was empty, and I was sick as a dog with “faux-flu” (fever as high as 102.5) for several days. Didn’t get the bone pain because a couple of days earlier, I switched my antihistamine from Zyrtec to Claritin for a week. But come hell or high water, in Feb. I will be getting Prolia—no matter what it costs or how many hoops I have to jump through. My PCP says bisphosphonates don’t strengthen long bones, only vertebrae, but that Prolia does and it is as protective as (or maybe even more protective than) Zometa against bone mets. He says to bypass my MO and have him apply for the prior auth.
Dec 13, 2016 10:13AM nottoday wrote:
Everyone seems to have different experiences with many of these drugs. Here is mine so far with Prolia:
After 9 months on an AI, I had an 8% drop in BMD, bringing me from the normal range to osteopenic for some of the measurements. (Despite calcium and Vitamin D supplements, and plenty of weight-bearing exercise.)
I've had 2 Prolia injections over the past 12 months (no side effects), and my last scan indicated that BMD had increased on average by 4%, bringing me back into the normal range on all measurements.
Due to this improvement, lack of SE's so far and the data showing some reduction in bone mets, I'm hoping to stay on Prolia for the next 3 years that I'm on an AI.
The data I've seen so far on Prolia do not indicate the more serious side effect of bone necrosis observed with some of the bisphosphonates, but I'm not an expert and some of you may have seen other studies. If so, please post. I think all the data on Prolia in the adjuvant setting are pretty new so hard to know what will occur long-term.
Dec 13, 2016 12:56PM muska wrote:
Based on what I read/heard the side effects, including the dreaded jaw necrosis occur more frequently with Xgeva that is basically the same drug - denosumab - but given monthly at 120mg as opposed to Prolia that is given once every six months at 60mg. Serious side effects are very rare with Prolia.
Dec 13, 2016 08:18PM MinusTwo wrote:
I talked to my MO yesterday for his advice about wait times if I have to have a tooth extraction or an implant. His recommendation is to wait the full time until the next shot is due (even if it's the full 6 months) and then wait another 3 months before having an invasive dental procedure. He also said to wait an additional 3 months after the procedure before starting Prolia again. Wow - I sure hope the crown I had before starting Prolia and the root canal work I ended up having done on the same tooth the first of December will suffice. There's still a chance of failure - possible extraction & implant if that happens. Since my only other implant required 5-6 months for the bone to grow around the 'implant' before the 'tooth' part could be anchored, that would mean a very long time with a broken crown on a back molar & an even longer time before I could start the shots again. I'll I can do is keep my fingers crossed.
Dec 14, 2016 01:30AM Shelly52 wrote:
I was told 2 years of Prolia also - 4 shots, 6 mos apart. I see my MO in Jan so will ask why it's not planned beyond that.
KBee thanks for sharing. Good for you for insisting on the biopsy. It's a good reminder for all of us. I just had a breast MRI. No results yet. Having them every 6 months to watch for recurrence because I am high risk. Kind of nerve wracking.
Prolia shot 2 was uneventful. So glad. To those who are aching from Femara or the Prolia -I started taking Jerrosil at the suggestion of my dermatologist to help with hair growth. Not seeing a hair change but have noticed marked reduction in my achey joints. Active ingredient is silicon. Bought on Amazon.
Dec 23, 2016 02:38AM IHGJAnn49 wrote:
Sandy, I have Medicare with aarp supplement plan f and silverscript for rx
Dec 29, 2016 09:56AM claireinaz wrote:
Is Prolia just an simple injection, like a Neulasta shot? I'm beginning to obsess about recurrence (again), my crazy-fearful mind, and am struggling with overtreating myself because of my fears. I will probably start Prolia in the New Year per Doc's recommendation, but my mind isn't wrapping around that I'll be doing it for "bone health"--I'm interested because I want more protection against bone recurrence. Sadly ILC, if it returns, doesn't usually go to bones (although it can); I wish Prolia worked for recurrence in soft tissues, too, since that's where ILC likes to come back.
Claire in AZ
Dec 29, 2016 10:47AM SpecialK wrote:
claireinz - yes, it is a subcutaneous injection that comes in a cartridge, just like Neulasta. Takes just a few seconds to receive it. I get it on the back of my less node arm.