Prolia Side Effects (Page 25)
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I would like to know of any side effects others may have experienced after receiving Prolia infusions. Up to now I have none.

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Lizzie (# 2677) --

I certainly did, and my skin too.
It has resolved, though. My last shot was over a year ago.

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Re: JenjiOz (# 2665)

Did you ( or anyone else ) experience a crawling sensation in your scalp? It is like a weird tingling creeping all over my scalp.

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Re: Judy (# 2676)

I wish I had known about this site before I let myself be talked into taking Prolia. On the other hand, I was so frightened (I had vertebral fractures) I might have taken it anyway!

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Re: sal (# 2675)

You’re right, Sal. And that’s what I do......spread the word to anyone I can. My daughters are also doing the same with their friends even though they’re not yet dealing with bone issues to the same degree that I and my peers are.

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Re: Judy (# 2674)

I just share my experience with anyone who will listen !

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Re: sal (# 2673)

Unfortunately we don’t have the resources to educate people like big pharma has! First and foremost giving prolia for osteopenia or to patients who have had success with other meds doesn’t seem to stop Drs from prescribing it.

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Re: Gloria (# 2672)

I agree ! Unfortunately it is next to impossible to fight " The Big Boys " I.e.Big Pharma ! All we can do is what we are already doing : educate people

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Prolia has been a nightmare for me. I had my first shot in 2012, without being given any info about the horrible side effects! My body may never be the same. I am still suffering most of the horrible side effects of this drug. It is now being used for bone cancer patients! I took it for osteopenia. As I stated, this drug has been and still is a living nightmare for me. There should be a class action lawsuit against Amgen, the maker of this drug. And the FDA should open their eyes to the many negative post on Prolia, aka, denosumab, and Xgeva. Still suffering. Wish I could find help for the horrible side effects I am still having, and my last shot was in 2015!!

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Re: Elaine (# 2670)

True enough ! I have multiple auto immune conditions and they all exacerbated during Prolia, and some persist after more than one year after my last injection.

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Re: JenjiOz (# 2665)

You are blessed My skin rashes persist with anything I put on my skin that isn't completely neutral such as shea butter or vit e oil ect. I still have periodic heat flashes that I never had before the prolia reaction. I have found that others have some lasting problems related to their worst side effects. Yes Hasimotos thyroiditis since mid 30's and the prolia reaction affected my stability. I found out that no one with an autoimmune disorder should ever take any medication made from a monoclonal body such as prolia.

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lizzie (# 2666) --

I only just did !
I had attributed my symptoms to Prolia, but perhaps it was indirectly related by affecting my Thyroid. I will never know, but perhaps this is useful information
for others who are suffering.

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sal (# 2665)

Unlikely to be a coincidence or "environmental factors", those convenient explanations offered for weird phenomena experienced concurrently with, or soon after, Prolia.

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sal (# 2665) --

Thank you for posting about your thyroid.. I have been really exhausted and gaining weight and had not thought to check my thyroid since the same med on the same dose has worked for years... I will check it.. I should have linked changes to possible prolia interference but did not.

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Re: JenjiOz (# 2664)

For 19 years my Hypothyroidism had been stable on the same dose if the same drug for18 years. Since starting Prolia in July 2016 landing in Jan.2017
My thyroid has been deregulated 4 times, the last time just recently !

There must be a relationship.

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Re: Jennifer (# 2657)

It's great that you are now out of the osteoporosis zone, and you are very fortunate that your treating specialist is not inflicting more Prolia on you. Prolia really is effective against osteoporosis, but frequently at a huge cost to general health. The skin-related effects you describe are virtually identical to mine. The most overwhelming, although not necessarily the most serious, effects I experienced were massive lethargy together with a range of skin disorders.

Three months after my first injection I had terrible hives which eventually came to resemble capillaritis. I had incredible itching, bruising, facial swelling, purple splotches on my face (probably tiny bruises from friction from my pillow). My limbs blossomed with red pinprick spots which morphed into red, then brown, blotches. I scratched in my sleep till my ankles bled. I used too much cortisone lotion, causing thinned skin and bleeding to my face and upper chest. My scalp was covered in itchy bumps and clumps of hair fell out. A couple of new moles. So many sleepless nights, not enough antihistamines to have any impact. Ridiculously high immunoglobulin readings.

A year after my second (and last) injection nearly all of these have subsided or disappeared entirely. I have occasional itching around my armpits (which are now hairless!) but my skin looks and feels fairly normal these days. This time last year my skin looked hideous and felt worse.

If you delve into this site you will find many similar accounts. Many detailed and much more serious issues but the skin problems are a constant theme.

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Re: sal (# 2663)

I have just seen a UK cancer research site which lists Prolia, together with Xgeva, as causing most of the side-effects we have experienced. It seems that our reports of dreadful reactions are being recognised in some quarters. It is interesting to read that Prolia and Xgeva are being lumped together now, when previously I had read that, seemingly paradoxically, Prolia had more side-effects than the higher dosage Xgeva. I guess that NOT having cancer still does make a difference.

A year of lethargy after an injection is acknowledged, with advice about rest and lowered expectations about activity. No-one ever warned me about that or its effect on my ability to work. Personally disastrous.

It is fascinating to read once again that these phenomena, e.g. rashes, should be referred to a doctor. My GP seems to have acknowledged the reality of side-effects without grasping their implications, while my prescribing endocrinologist seemed sceptical. And as for taking a burning rash to an emergency department, well, I tried it once on a night of desperation and I might as well have been in Fantasyland. I left humiliated and still in agony.
It was what some medical sites recommended as a matter of urgency!

Tender, swollen skin and allergic reactions are supposedly 'rare' even now, but it seems that the weight of evidence is mounting.
We will be vindicated for reporting our supposedly imaginary side-effects, but the lack of transparency about adverse effects and the lack of options that we were offered, largely due to Amgen's suppression of information to prescribers, is thoroughly reprehensible.

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Re: Lizzie (# 2662)

It definitely does list all of them, but more than they used to

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Re: sal (# 2659)

I don't see the side effects we have posted here and reported... like hair loss, mouth infections, and others we have commiserated about.

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Re: Marion (# 2655)

There is one other option left for a blood thinner and MD's don't particularly like it. Lovenox - one has to do a small subcutaneous injection daily. I used it to prevent a blood clot and had zero problems with it. Used it for a good three months. Docs are pretty busy now and don't like to waste time messing with Warfarin. It's so much easier for them to use the new one. I have not tried this new one and I really don't want to. When I talked to my Orthopedic Surgeon in June 2018 we decided to stay with the Lovenox. Hugs~Pood

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Re: Jennifer (# 2657)

If you did not have these issues before Prolia can for sure cause the issues you are having. Nothing to be done but stay away from what you know causes exacerbation of the hives ect. Whole food vitamins, antioxidants, polyphenols are important. Maintain a whole food diet and get your calcium via your foods not supplements. collagen in your coffee in am helps keep your calcium levels up. Bone broth is good as well.

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