Bone Health
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STOPPING HAVING PROLIA INFUSIONS

|Hello Everyone,

Well, had my first two infusions during 2017 but have now had to come off this drug. I appeared to have no side effects immediately after the first in March and the second in September, but during the year - and particularly after September, I had one really bad chest infection after another, for which I had to be treated with antibiotics and (worse still) week-long courses of prednisolone tablets, 8 per day. In fact, in December 2017 I was so ill, I had three weeks of this dose, in succession.

Of course, I have no proof that the prolia was to blame for this: I have had bronchial asthma since birth and therefore have had to be treated for chest infections throughout my life. (However, in recent years, I had generally been much better, especially since taking Vitamin D in the past five years, after a blood test showed me to be very low in that vitamin). Being treated with a big dose of prednisolone tabs is not good for bones, - so I decided to ask my Osteoporosis Specialist if I could come off the prolia infusions (I was due for another four infusions in the next two years).

I am now back on twelve monthly bisphosphonate injections instead. Yes, I am disappointed that I had to give up on prolia. It is admitted that some people get chest infections as a side effect and obviously being highly vulnerable in that department I must have been at higher risk. As I said above, there was no proof the drug was to blame, but I was so ill with a run of severe chest infections and the misery of that, I decided not to take a chance.

Anyone else had the same problem with Prolia, I wonder?

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Hi Trisha,just inquisitive ,do you mean injections ,not infusion.?

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Yes, sorry, injections is the more accurate word! (It's the zolendronic acid that is infused, isn't it? I had one of the latter last Tuesday, after a rather horrid, lengthy session when none of the nurses or doctors present struggled to get a canular in my arm!)

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I am convinced that Prolia is the source nof your problem. I researched and discovered that FDA comments prior to approval reveal strong concernd regarding the negative impact of Prolia upon the immune system. Last year, I experienced two Shingles outbreaks. The first was so severe that my eyesight was in danger.

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, What does worry me, however, is that my GP did not make the link. I had to research it for myself. I phoned the NOS helpline to discuss my fears and they recommended I ask to see my consultant again, before further prolia injections. I phoned up the hospital concerned and they saw me without delay. My consultant said she thought prolia could well be the culprit and has changed my treatment back to annual zolendronic acid infusions.

I am going to keep an eye on my general health, though, even on the zolendronic acid, for it could well be that "the cure is worse than the disease", if you know what I mean!

Are you off Prolia now yourself? Please keep in touch as to how you are.

Many thanks.

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Unfortunately GPs do not know much about OP unless they have a special interest in it. GPs know a little about a lot of conditions. You were very wise to research it for yourself and also to call the NOS helpline. I wish you well and definitely keep an eye on your general health.

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Thank you, Kaarina. Really appreciate your knowledge and advice.

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Hi Trisha,I'm not disagreeing with you,I can only speak for myself.

I've been on Prolia for the past 5yrs,and it suited me just fine. I have Emphysema . I can't say anything wrong with it,because I haven't had a chest infection for about 10yrs.

I was taken off Prolia last July because I broke my wrist in a bad fall. I was put on Forsteo,which just not agree with me at all. So seen my OP nurse Wednesday and I can go back to Prolia. Which I'm pleased about because I had no side effects at all with it. I have fresh lemon juice in a glass of water every day,and I put having no chest infection down to that🙄.

Think your best to go with your own instincts,as long as you've done your homework. Good luck. Take care.

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