Prolia and Reclast for bone density | Arthritis Information

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Anyone out there have any experience with either Prolia or Reclast? My rheumy wants me to consider taking it to help preserve and maintain my bone density. I'm scared to death to take any of these products.  Prolia has almost no track record, since it was just okay'd by the FDA last year.

I'm not sure I'll be able to get a bone density scan because I just had one a year ago, and the insurance companies don't like to allow them so frequently...only every 2 years.  I'd like to have one before even thinking about starting these drugs so I know how my bones are doing. 

freesia

No experience with either, but I agree with you that it is scarey to take drugs with almost no track record.  I wonder if your insurance company would OK another bone density as a marker prior to taking these drugs? You never know what they will approve. Might be worth a try.

Thanks, Nanatjjj--my primary care doctor is putting in a request --I don't know what is wrong with my rheumy, she won't even try asking. I hate to say it, I really do, but I think I need a new rheumy.   Freesia,

As I am in the UK I just do not have that problem.   However, one thing I do know is that until a test shows my bone density is dropping.  No way would I take any drugs.  And then if I had to, it would be the one that is oldest and has the least side effects.

Are you or have you been on HRT?  If so HRT does help maintain bone density.
Reclast is just another bisphosphonate - with the same side effects as the others except you get it administered once a year by infusion so you don't have the sitting or standing for an hour after taking the tablet once a week! What bothers me most here is that once it's in there you can't get it out again!
 
Prolia was mentioned on a German programme about osteoporosis that I was watching last week. It is a human antibody and it works in a totally different way. The rheumatologist/orthopaedist on the programme seemed impressed and the patient was back to riding her bicycle already! She had had severe bone density loss which had led to a vertebra collapsing despite having been on bisphosphonates for years. The vertebra had been filled with bone cement and then she was started on this drug. It encourages bone formation according to the programme. They monitor if it is working by looking at the level of a substance in the blood (sorry, can't remember what it was now) and after 6 weeks she was back for a check up and they said the level was good, bone was being made.
 
One of the sites with info about it that came up when I googled it says it slows bone destruction - but there are also other changes to the way the bone is formed and they don't have any longterm studies yet.
 
Both of them mention joint and muscle pain as a side-effect (got enough of that with PMR thanks). Both of them also say they are to be used where other drugs for bone protection have failed or in patients at high risk of fracture. I still feel there is too much desperation to get us onto these drugs without there being evidence of a serious risk of fracture - I can't remember what you have said now, what was your first bone scan like, freesia? Was there any degree of osteoporosis? The bone loss is quite slow - even on steroids, it doesn't just pour out of the bones, and if your bone density was OK a year ago it is unlikely to have changed a lot in that time. The primary problem is in people who did not build good bone density in their youth (most of the bone is there by age 25 and then men and women start to lose some bone density after that) either because of lifestyle or poor diet. Then women who have an early menopause and do not take HRT are at a higher risk. Slim built women and those who do not do any exercise may have problems - because you build bone in response to the bones being bent very very slightly when you walk, run etc (not enough to see!). If you are light in weight or don't take such exercise this stimulus is not there.
 
I must say, I'd prefer to be offered the option of HRT for bone protection but it seems to still be suffering from the bad press a few years ago. Wouldn't it be nice if they could all sing from the same hymn sheet? I'm about to face a discussion about statins I suspect - my LDLs are slightly high so there is immediate panic. The facts? According to the primary study for cardiovascular disease risk I am at low risk anyway with a risk that is about the same as if I were to take statins. If you separate men's and women's results in the studies on statins you find that, in subjects who have not yet had a heart attack or stroke, although a man's risk of a heart event is reduced by taking statins - a woman's is not. There is no benefit for women in taking statins until after she has had a heart attack or stroke, then they will reduce the risk of a second attack. This, however, is not publicised widely despite there having been several studies saying exactly this. It is thought that the biggest saving to the NHS in the UK that could be achieved would be not giving statins to patients for whom they are are achieving little or nothing - except putting them at risk of side-effects! I really don't have a problem with taking a drug that is going to achieve something - even steroids
 
Sorry - Rant over!
MrsE
MrsUK and MrsE--thank you both very much.

 I agree with you, MrsUK; if I were really suffering osteoporosis, or had breakage, I guess I would have to take something for it.  I took HRT for less than one month back in 1998; I started getting migraines from it so I stopped taking it. In fact, my doc at the time was recommending it to help slow bone loss, but now of course, they've discovered it can be bad for the heart so I am glad I stopped taking it.
 
MrsE--rant on!!!! You have more sense than some of the doctors.

 My last bone density test showed that I was just on the brink of osteoporosis, but still in the osteopenia range, and some values actually were better than 2 years previous, some were a bit worse. There was no radical change.

 I did some research of Prolia on the internet and the negative reports are devastating and frightening. I haven't researched Reclast yet, but I assume it is quite similar. Scary reports on Prolia: muscle pain--to the point of not being able to get out of bed for days-- but not only that--chills, fever, kidney failure, new allergies, and more;you shouldn't take it if you have thyroid issues or already have tooth problems ( i have both so I guess I have good excuses to decline). One woman who was taking Prolia infusions had an infected tooth and could not find a dentist who would treat it, due to the jaw bone problems that can happen.  Of course--those are only the bad experiences and there were one or two good experiences sprinkled in among them. 

I love how cavalier my rheumy is about saying "the main side effect is muscle pain" --OH is THAT ALL??? I do have enough of that with PMR.  And yes--why are they so anxious to push these drugs at us "just in case".

MrsE, my primary care doctor has told me so many times that bone loss is slow, just as you say and I believe you and her.  So why is my rheumy pushing these dangerous drugs at me if my bones are not in big trouble? Big Pharma needs human guinea pigs?

That is interesting about the statins. It sounds like the NHS in your country is bowing to the pharma companies (?) just like they do here. 

Bone loss drugs all seem "too good to be true" . 

I already did tell my rheumy not to get mad at me if I decide I don't want to take these drugs! But it's hard because you know, they really want you to take them.  At least my rheumy seems angry when I refuse to take them--I wonder if they feel like they need to dole out drugs because monitoring drug use is what they are trained to do and a big part of their job? Having patients doped up to the gills is like job security for them?

I'm only guessing, but this is what it seems like.  Oh well--even if I have to find a new rheumy, I'm not getting those infusions....

freesia


freesia2011-03-14 13:43:42I think the anger is partly because we are daring to question them: doctors have always been used to being held in awe by Joe Public and they are beginning to lose control. I suspect it may be worse for you in the US as they still get to earn megabucks unlike in the European "socialised medicine" models.
 
Big Pharma is highly skilled at marketing and they emphasise the results that make them look good: you can do anything with statistics! If they camouflage the results of the bits that don't agree with what they want it helps their sales. If the bit about statins not helping to prevent heart events in women with no previous history except elevated cholesterol then their target population is reduced by 50% or so - doesn't take a rocket scientist to see how that impacts on their sales.
 
Over on the Patient Experience UK site one of the ladies has just been to see an orthodontist as she has a loose tooth which need to be removed but, as she is on steroids and has been taking AA they wanted an expert. AA has been given the blame for the loose tooth. He pointed out there was a second loose tooth on the other side which might as well be taken out at the same time. She stopped taking the AA in December 2010 after 2 years but he said waiting to remove the teeth won't make any difference - AA remains in the body for a long time (as far as I know, at least 10 years as that is the length of time the trials have been going on). He then asked WHY she was taking it if she didn't have osteoporosis. When she told him it seems to be part of the package when you are put onto steroids he "harrumphed" and said "How interesting!".
 
I won't be taking any of these bone medications for a long time yet - HRT I would possibly consider despite the scare stories there as long as I get some sensible information. Losing the enamel on your teeth because of steroids is one thing leading to you needing dentures. Losing relatively large amounts of bone in your jaw and your teeth becoming loose is another - will that hole in your jaw heal or is that going to remain a weak point????
 
BTW - the NHS is actually less pandering to Big Pharma than you'd think. They refuse to pay the high prices for some things and have contributed to lower drug prices in others as they are such a big purchaser. The problem is more that many doctors don't do enough reading and just continue with the perceived wisdom. I do have sympathy with PCPs to some extent as they need to know about a lot of things and obviously can't be up to speed on it all - but in my opinion they should be a bit more questioning. The biggest problem is getting money to do the research studies - there is less and less available and anyting that isn't sexy enough doesn't get money.
 
MrsE
Interesting, MrsE.

Doctors must hate the internet and all the information we can get, to challenge their "godliness". 

I just didn't feel right taking HRT, and I'd never had a migraine in my life until taking it, so I just opted not to continue it. Other people do well on it, I guess.

I'm glad to hear that the NHS isn't pandering to Big Pharma so much. Actually I wouldn't expect them to...it seems like attitudes are different in England and Europe.

Thanks again for an informative and interesting post!

freesia
I took HRT for 13 years - strangely, for symptoms that in retrospect were awfully PMR-like. I wonder! I had one or two different ones - the best was the one MrsUK has been on for years but at the time it wasn't so common in the UK and I'd started on it in Germany. The relief of the symptoms was such that I never minded taking it - it was pre-menopause but there was a lot of evidence that the pre/peri menopause period could start many years before actual menopause. I don't know whether that had any influence on when I finally got there - at the age of 56 and a half! It used to be said that if you couldn't get on with the HRT you were on - it was the wrong one. There are dozens of different version! But I do understand why people don't like taking it.
 
MrsE
I forget which HRT I was taking, but it might have been Premarin.  When I found out how they treated the pregnant mares who supplied the hormone I was even more glad not to be taking it. Sorry--I don't mean to offend anyone who does take it and it works for them! If it doesn't cause any harm, "go for it" !!

As far as wondering if your HRT might have triggered or in some way brought on PMR , I've been questioning every medication I've ever taken, suspicious that some med might have caused the PMR ! Especially when the doc's say "no side effects" with a particular medicine.

freesia
freesia2011-03-15 15:44:14No - I meant the symptoms were there and were greatly helped by the HRT - that's what I now think is a bit strange as many were similar to the PMR ones!Hmmmm.....that is strange.  Update on bone density  test: my insurance won't allow it because it's only been a year since my last one.

What is that saying? "there's very little CARE in health care these days".  <sigh> At least in the U.S.
I refuse to go get another bone density scan.  (I have osteoporosis in hips and osteopenia in spine) I refuse to take those poisenous drugs. The ingredients are found in toilet cleaner (either bisphosphonates or prolia) They make your bones thick but more prone to fractuere. One can get osteocrenosis of the jaw. . Google it and see pictures. You'll never touch that stuff. Femur fractures have been reported aswell .
Get lots of calcium (not milk however) Vit D, Vit K and eat an alkalizing diet and do if possible weight bearing exercises and hope for the best!.
"Get lots of calcium, Vit D, Vit K".............and several weekly servings of oily fish: salmon, mackerel and sardines (including the bones with the latter!) Hi Freesia
Vitamin D is far more beneficial to the bones that Vitamin K.  I have read that Vitamin K does not protect against thinning of the bones in post-menopausal women although it may help to prevent fractures.  The Vitamin D is important because it helps with calcium absorption into the bones. 
 
I haven't been prescribed Vitamin D because the relevant blood test showed a reading of 54 which my GP said was ok.  However, I've since discovered by accident that the words "borderline deficiency" were against the reading on the lab results!
 
Immediately on starting very high dose steroids I paid for a private DEXA scan and the results were normal.  However 2 years into the steroids the next scan showed Osteopenia (the stage before osteoporosis) so the steroids do pose a very real risk in some people.  I have my next scan due in a couple of months so I'm relying on the oily fish (and the beautiful sunny days here in the UK at the moment) to work to my advantage!
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