Considering Prolia, concerned about its Immune System Effects

ptdreamers

Brendatrue, I have medicare and supplemental insurance. They covered the Prolia shot.

Brendatrue

Thanks for letting us know. I've heard that some private insurers are balking but I don't know the rationale for denying coverage for someone who has had breast cancer, is ER+, has osteopenia or osteoporosis, and is using hormonal therapy that negatively affects bone density. Of course, many things that private insurers do or don't do often surprise me, even after all the insurance battles I have fought.

crazy4carrots

I'm Canadian and under 65 so I do carry supplemental insurance to pay for drugs, dental, chiro etc.  My insurance covers Prolia.  With insurance companies, it always comes down to the issue of cost, so I'm thinking that  two Prolia shots each year must be cheaper than weekly bisphosphonates.

Still considering the switch to Prolia and want to hear more "true life" stories from our BCO sisters,, please!

Brendatrue

"Learn to think before you learn to believe, or you'll soon believe you don't have to think""--lindasa, I love your tagline. I've learned over the last 16 years of breast cancer adventures to question, seek more info, deliberate, and do whatever I can to make reasoned decisions about my care (and the rest of my life). I, too, hope we hear more from those women out there who have tried Prolia or decided not to try Prolia or who are still considering it or other approaches to improving bone health.

sweetcorn

I got the Prolia shot a couple of weeks ago, and had no side effects.  I had osteopenia before cancer/chemo and the bone density indicated the progression to osteoporosis.  When I was in college, I was anorexic for a time, and I do not think my bones ever recovered.  I was on Forteo for two years and then Evista.  I am still on Evista as I told the MO that I did not want to be on Tamoxifen or Arimidex.  And he agreed to let me keep the Evista.

Jane

Brendatrue

Jane--It sounds like you have confidence in taking Evista, and I hope that will work well for you in terms of both bone health and preventing recurrence. I'm glad to hear that you had no immediate side effects of Prolia. I wonder if the side effects most often noted are more likely to occur with repeated injections? Or if there is a certain profile of patient who is more likely to experience them? It will be interesting to hear from others....

ptdreamers

Brenda, I told you  I got my shot on February 3rd. Other then minor aches, nothing and as I said they could have been weather related. I too wonder if repeated shots would be any different but since they are six months apart don't see that it would.

crazy4carrots

pt and Jane -- thanks so much for sharing your experiences with Prolia!

Brendatrue

pt, Thanks for your input.I wish my background included a better understanding of science, which might help me to grasp some of the information about Prolia and cytokines and the potential for harm to the natural immune system. Anybody have a grasp on that or have related comments?

MostlySew

I'm scheduled for my first shot tomorrow. I researched as much as I could, and checked with both my dentists (I've got dental pockets and have had for years) and got the go ahead from them. They said as far as the osteonecrosis to just be careful scheduling any "bone" type dental work like extractions, implants etc. none of those are in my future thankfully. I am a little concerned that I haven't had a calcium blood test though, and my research says I should. Have had my Dexa though, so guess I'll just go ahead with the shot and worry about calcium levels when I see the MO in two months. I'll let you know how it goes.

ptdreamers

Good luck Mostly sew.

MostlySew

Thanks, Ptdreamers....I don't anticipate any problems, but might take 2 Tylenol on my way to the appt....for insurance!

Brendatrue

MostlySew, Thanks for letting us know. It sounds like you feel optimistic about this choice, and I hope all goes well with your first injection. By the way, did you calculate your FRAX score when you were making your decision about this medication? I'm not trying to imply that you should have, I am just wondering if that was a factor in your decision. Please let us know how you tolerate this med and whether you learn any info that could be helpful to others. Thanks!

MostlySew

Hi Brenda,

No, I did not consider FRAX at all. For one thing it doesn't work on my IPAD (no Adobe flash player) and I don't know my DEXA numbers. I presume the MO did that part of the decision making based on my DEXA history. All I did to make my decision was to check with my niece's husband , who's a back surgeon at a medical university and knowledgeable about osteo issues....although not about osteo issues with cancer and the AI's it turns out. I also checked about dental disease as I said, and did some research about the thyroid surgery issue which the research says is something to investigate as I had that many years ago. After that, I'm trusting my MO and the knowledge that the AI I'm taking (arimidex) will only cause my osteoporosis to get worse rather than better. I have been able to stave off full osteoporosis for about 5 or more years (had osteopenia all that time) thru diet and exercise, but the arimidex has won.



So......that's the issues I looked at before going ahead with this. Although I must say I'm much happier taking Prolia than being saddled with Fosomax for example. Just my feeling.



Hope this helps. I'll let you know about side effects from the shot in a few days.....

Brendatrue

MostlySew, Thanks so much for sharing how you came to your decision about Prolia. I hope your injection goes well and that you have no side effects, short- or long-term. Keep us posted.



I think sometimes I exasperate my MO, because I am often skeptical about new meds, I do a fair amount of research about treatment options, and I am concerned about side effects given my med sensitivities and allergies. I don't worry too much about being a source of exasperation as long as I know that my MO still has my best interests in mind and is willing to work with me. He and my internist occasionally disagree about my care, and I work hard to make the right decision for me. It's tough when I look back and think, knowing what I know now I would not make that choice, but I try to avoid judgment because I did the best I could with the information that I had at the time.

crazy4carrots

I'm still sitting on the fence about this one!  In fact, I'm on the fence about whether to continue talking any of these medications.  Have already had the experience of a sister-in-law who, after being on Fosamax/Fosavance for just over 5 years fell last year and fractured her femur in 4 places.  She is still limping and in some pain.  Surgeon said her femur was extremely brittle, and this did not register on a DEXA she'd had 3 months earlier.  Her surgeon advised her NEVER to take that stuff again; he has seen too many cases of fractures caused by bisphosphonates.  Prolia uses a different mechanism but there is enough doubt as to whether this difference will reduce the brittle bone aspect to make me wary.

MostlySew

Hi Lindsay,

I don't blame you for being on the fence, but to clarify, Prolia isn't a bisphosphonate and acts completely differently on the bones/body. I'd been hearing for several years that Fosamax was giving a false positive read on the Dexa scans.....I.e. the bones looked more solid, but in fact weren't any stronger. Prolia has been being used for late stage cancer mets with success, or so I understand , for several years. That's what decided me to try it as I knew I needed to do something.

It sure is tough to make all these decisions though, and as Brendatrue said, we each have to make the best decision for us with the knowledge we have at the time.

crazy4carrots

Yes, Prolia is different, as I said; it's a monoclonal antibody, but I'm concerned that there haven't been long-term (10+ years) studies published yet.  I haven't had any SEs from the Fosavance, nor do I have any allergies, and I seem to have a healthy immune system (no colds or flu for many years), but still....

Oh yes, a confession -- I'm a Libra, and I hate having to make decisions 

MostlySew

Lindasa, I can relate to that. I think I've used up all my decisions for the year already!

Mickey32

I have been told (in addition to my breast cancer and most recent recurrence) that I have something called CVID which is common variable immune deficiency. Essentially it means that I am more susceptible to respiratory and sinus infections. All that said, I had my first Prolia injection 3 months ago. I had no side effects, I was glad to stop taking the fosamax for sure! My onc told me the main thing they worry about is the Prolia can lower the blood calcium (it's running back into our bones!), so he told me to make calcium + vitamin D supplements a part of my daily routine. No problems so far.

crazy4carrots

It's so reassuring to hear your stories!  I'm starting to slide off the fence a bit....

Brendatrue

It's great to hear from others who are pondering the potential benefits and risks of Prolia and those who have decided to take the leap. lindasa, I'm also worried about the lack of long term studies. I think the FDA approved this drug in 2010, and I guess I am just skeptical about using a med with a short history of research and use behind it. I also don't have much confidence in pharmaceutical companies as a whole, but I guess I shouldn't generalize. If I didn't have such a c-r-a-z-y history with so many different meds, I might me more open minded. As it is, I think I'll keep reading, pondering, and checking in here to see what others are thinking, deciding and experiencing.



Mickey32, thanks for your input regarding your experience, especially given your immune deficiency. The immune deficiency issue is important for me as well, as I noted when I started this topic. I'm glad you've had no problems thus far!

MostlySew

I had my first Prolia shot yesterday and it went just fine. They did keep me 15 minutes to make certain I didn't have any reactions ( I didn't) and after this I won't need to stay at all. Other than being tired yesterday afternoon which a short nap took care of, I can't even tell I've had the shot. And it's entirely possible i would have been tired yesterday anyway. They did again caution me to be sure to get my 1200iu of calcium and 2000iu vitamin D daily and to stay well hydrated. I'll let you know if any symptoms show up, but I thoroughly doubt they will.

Brendatrue

MostlySew, I'm glad for you that you had no immediate side effects. Perhaps you can let us know over the next months if you continue to do well or if you encounter problems. And, of course, it will be very interesting to hear how folks are doing in a year or more.

Sunshine99

I had my first Prolia injection on Monday.  My bone density test came back with a 15% reduction in the past year, so my onc wanted me to start it.  My dentist is concerned with the risk of ONJ, but I'm more afraid of fracturing a hip.  Í am 53 years old.  Don't know what this is going to cost me yet...

Sunshine99

Sorry, but I had another question:  Along with the calcium and vitamin D, is anyone taking magnesium?

MostlySew

Sunshine99,

Haven't heard about magnesium, but there is 100mg in my daily vit.



Did read an interesting thing today from an Occupational Health Nursing article from 1985 (kinda old, but might still apply). It was about self care for osteoporosis. Among other things it recommends "taking a calcium supplement on an empty stomach or preferably prior to bedtime". And "eat calcium and fiber foods at separate times as fiber decreases calcium absorption".

Brendatrue

Sunshine99, I have read various recommendations about adding magnesium when taking calcium supplements, ranging from taking 300 mg per day for adult females to taking 1/3 of the calcium dose you already are taking to taking 2/3 of the calcium dose you are taking. I think the last calcium supplement I took had 600 mg calcium and 300 mg magnesium. If I understand correctly, magnesium allows the body to make effective use of the calcium, which also keeps calcium from being wasted or buidling up deposits, which I think can be a cause of joint pain and other problems. I also take Vitamin D 5000 IU every other day, and my Vit D level has been gradually improving.

 I am trying to re-examine the vitamin/mineral supplement issue to decide what is best for me. When I first started taking calcium, my MD insisted I take 1200 mg calcium in supplement form, in spite of the fact that I had a calcium rich diet. I ended up with excessive calcium and an inbalance of electrolytes, which made me feel simply awful. I learned a valuable lesson about listening to my own hard earned wisdom. I wish you the best in discovering what is right for you!

 MostlySew, I read somewhere that calcium is best absorbed when taken in 500-600 mg or less at a time. If you take calcium carbonate, you should take with food; if you take calcium citrate, you can take with or without food. If anyone else knows differently, please advise!

Brendatrue

Just an update, in case anyone is still interested in this thread. I had a long visit with my internist this week, and he suggested that, at least for the time being, I NOT take Prolia. I have been dealing with chronic fatigue since my last chemo in '09 and along with the use of tamoxifen; I have had mild anemia since chemo; and my WBC's have been trending downward over the last year or so. He suggested to me that my immune system might not be able to tolerate Prolia given its side effect of having a "negative impact" on immune functioning and that, in essence, it was too risky for me. I guess for now I will continue to do all those other things I have learned to deal with osteopenia. I wish all who take this med good luck and good outcomes!

otter

I can't add any information about Prolia, but I wanted to confirm what Brenda said about limiting the amount of calcium supplement to 500 mg at a time and taking calcium carbonate with meals.

Only about 500 mg of calcium can be absorbed across the GI tract at a time, because the calcium receptors on the cells get saturated.  Anything in excess of that amount will pass through the GI tract and not be absorbed.

Apparently, calcium carbonate is not absorbed effectively unless the stomach contents are acidic, which will be the case during or immediately after eating a meal.  That's according to the osteoporosis specialists at my cancer center.  They recommend taking calcium carbonate at mealtime. OTOH, calcium citrate (as in Citracal) doesn't have that limitation -- it will be absorbed regardless of stomach pH (with or without food).

otter