Prolia Issues And Side Effects (Page 4) (Top voted first)

I am not going to have my next shot of Prolia due 11 June. I have already had two injections and lately have suffered horrible side effects such as terrible constipation, leg and foot cramps, skin rashes, stomach pain,etc.

I also found out that Prolia works by stopping the body's own bone production, causing old bone to become denser. This results in probable fractures due to old brittle bones, Prolia also causes low calcium levels in the blood, a weird side effect seeing it is supposed?to strengthen boned!

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Re: Laura (# 82)

There are other options, an alkaline diet, Yoga, especially Yoga for Osteoporosis, my go to exercise is called TTAPP. This one I have been doing for years. It was a long period of inactivity following surgery, plus a poor diet because the drugs caused me nausea that caused me Osteo. Check out Yoga for Osteoporosis by Dr. Fishman, Save Our Bones, the Better Bones Blog, and TTAPP.

Be well.

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Re: Laura (# 82)

Hi Laura, There are other options available. The big issue for me regarding Prolia was that I naively accepted a six-monthly inj. which delivers what it promised in terms of bone density but also delivered many unwanted and lingering side-effects. While my fracture has healed, and my bones in general are recovering, the various 'adverse events' (to use the Australian TGA jargon) are gradually tapering off, but I have no idea if they will ever totally disappear. These side-effects are supposedly minimal, unusual or rare BUT the number of people affected, often severely, is clearly high. As for percentages of people affected, that is less clear. I am skeptical about the official statistics. We, on this site, are definitely part of the statistics. After a great deal of agonizing, and influenced by a body of research that shows that stopping Prolia causes a regression to a worse than ever state of bone density, I realized that stopping treatment was not an option for me. So now I am taking Actonel, so far without any negative fallout. The acknowledged side-effects are much fewer, and seemingly less common. The reason I was prepared to take this on is that it is a weekly tablet, meaning that I can stop it if I feel there is a need. This is a very different proposition to a six-monthly inj. which cannot be undone. I know that I am still exposing myself to risk but I am also very glad to have regained a fair semblance of a normal life now that I am physically more capable and active due to both these treatments. My skin begs to differ, a hangover from Prolia. I was pretty shocked to experience the unwanted effects of Prolia because I have never previously been susceptible to side effects in a major way. Naive, I suppose. This time I'm crossing my fingers for the triumph of optimism over experience. Explore the possibilities but with research and caution, unlike me initially. Bonne chance!

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Re: Poodle (# 66)

Hi Poodle. I'm very interested in what you said about bone deposits in facial bones. For most of the past year I have experienced itchiness, seemingly in the bone, around my eye sockets, between the eyes and on the browbone. A hollows have developed beside the inner corners of my eyes. When I was exploring the deeper hollow with my fingertip I discovered a tiny growth. This turned out to be a basal cell carcinoma, which was removed. The small wound was very slow to heal and the itching persisted long after it healed.
Do you know any more about this strange phenomenon? Your mention of it is the only info I have seen. I wouldn't even know what kind of doctor to consult. I'll keeping hunting for further reading.
Thanks, Jenny

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JenjiOz (# 92) --

I am so very sorry that this has happened to you.

Be well.

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Re: Nikki (# 92)

Search Dr. Loren Fishman a Physiatrist in New York City. He is conducting a study on Yoga and Osteoporosis. His initial study shows excellent results, so he has expanded it. If you live in or near NYC, you could have a consult. Another option is to find out if there is one of his trained instructors near you (they are scattered around the country); or, obtain the book and/or the DVD from his office. If you are unsuccessful, please post that, perhaps I can help.

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Re: Poodle (# 96)

Thank you, Poodle. It is truly alarming to read more fully about Prolia and its hideous effects on its victims from the outset. It is illuminating to see the general consistency over time. I am only as far as page 42 and I need to take a break! What difficult and depressing reading. So much pain and suffering, including your own, which seems to have been particularly dreadful.

My gloominess has been increased by seeing advertisements for Alzheimer's testing on almost every page.

Nevertheless, your explanations of the concept of 'half-life' brought to mind Zeno's Dichotomy Paradox. I know my own issues are gradually decreasing in a 'two steps forward and one step back' way, and have never been of the same magnitude of many, for which I am somewhat grateful, knowing what the possibilities are.

Now I'm waiting it out, but without any certainty about whether any of my recent allergies will subside.

Thanks for all your wise words.

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Re: Nikki (# 89)

Thanks again. I am now taking it in liquid form, adding it to my water.

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Re: jenjioz (# 98)

You mention recent allergies -- are you referring to food by chance? There is clear evidence that Prolia brings out the worst in our DNA that we never knew we had until Prolia turns up. In my case it is gluten. Years past the one and only shot it still comes back for some unknown reason that it is still causing with my DNA. I can go 6-9 months eating all the gluten I want and then there comes a day when I can have none, not even a sniff. It was one of the worst side effects I had from Prolia other than a cataract, infections, losing 2 two teeth - it ate the roots off of two back ones and the only thing that saved the rest of my mouth was it ran into a titanium implant and even Prolia cannot get past titanium. My dentist bill for the two crowns for the implants was almost $3,700 yesterday.. I truly believe Amgen should be paying that bill but not until enough of us get it and report it so we can have a class action suit. We all need to figure out what we all have in common with bad side effects from Prolia other than the broken femur and then we will have a class action suit against Amgen. Many they admit to but many others they do not. It's a certainty that our Doctors are not telling us about the bad side effects and we have to research them on the net. Be well~

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Re: Poodle (# 100)

You must have a very thick file of medical and dental bills due to Prolia-related issues. I wonder if it would be worthwhile sending copies to Amgen just to see what would happen? I doubt that it could hurt. Food allergies on top of everything else - that's just cruel! Fortunately, I don't seem to have food allergies except for a longstanding allergy to MSG in large quantities. My IgE levels were 13 times normal at the last test. This manifests in a huge increase in my usual perennial rhinitis (some days I sneeze about 100 times); an unexpected allergic reaction to a very common local anaesthetic; and a recent inability to wear most of my favourite jewelry. I had minor surgery without any anaesthetic several months ago (a general anaesthetic wasn't justified), after I had a massive skin reaction, with lethargy, to a routine local anaesthetic a few months before that. It was the same one that I've had often for dental work over the course of many years. Now I'm afraid of unusual reactions to anything else I might have to take. Like most of us, I have a collection of various kinds of costume jewellery - now I can't wear most of it because it irritates my skin badly, causing itching, and sometimes red or purple blotches on the surrounding skin. I have worn some of those things for decades. Same goes for metal on clothing - zips, metal buttons and studs on jeans. I can't even hook my reading glasses or sunglasses into the top of a t-shirt or dress when I'm not using them. I know that nickel allergy is common; I seem to have acquired it. So, it seems, nothing serious, but certainly extremely irritating. Now that my massive lethargy and the worst of the various skin conditions are subsiding, I feel that I have got off very lightly indeed.

Thanks for your concern and all your hard work on our behalf.

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Re: Poodle (# 100)

P.S. Another "allergy", if you can call it that, is sunlight. Even with a hat, long sleeves and sunscreen, being in the sun makes me incredibly itchy, and has for most of the past year, beginning 3 months after my first shot of Prolia. This is annoying with winter on its way here. I normally spend a lot of the day, when it is cold, sitting in a sheltered "sun trap" on my verandah. So my heating bills are about to rise. The other thing, which I have discovered in the last couple of days, is that I can no longer have wool touching my skin, not even a little bit of collar. Obviously, I don't wear wool next to my skin, but a collar??? So now I'm in heavy cotton and polyester with no problem. Winter is coming (at least in this hemisphere) and most of my outer clothes are useless. Sort of trivial but I am furious anyway, partly for myself but mainly for everyone.

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Re: JenjiOz (# 101)

You might want to try this with a small piece of your costume jewelry to see if it works. In the past, I've brushed on clear nail polish on the back of a piece of costume jewelry and it has helped prevent discoloration and skin irritation.

Sending you hugs from Texas. Hope you're feeling better.

Nikki

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Re: Poodle (# 96)

One is on Prolia Side Effects Ongoing, post No. 180 by Daisy about a growth growing in one of her eye sockets where Prolia was depositing more bone that was not supposed to be there. I just saw it today as I am looking for a certain poster about her medical condition that I did finally find under Prolia side effects. Be well~

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Re: Gracie (# 44)

There are other drugs and you need to try them to find out if they work for you. Merck has Actonel which is a pill that can be stopped at will and there is also Boniva which is a 6 month inj. of a bis and Reclast which is a yearly inj. and it's also a bis. There is also another that is akin to HRT if you have not had DVT's or PE's. It's name may be Evista. One nice thing about Merck is they have a huge settlement fund for class action suits. I just didn't want to be one of them when it was suggested by my Dr. For right now, those are our only other choices in the drug market. The one I really liked was removed a year or two ago so I'm on just calcium supplements. Hopefully, I can win this war myself. Be well~

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Re: Poodle (# 110)

I'm hoping that the increased sensitivity will fade away over time. That is the optimistic view that I am trying to take. Some of the skin issues have definitely subsided. There is a family tendency towards eczema and asthma which I have pretty much avoided. I just had to look up the spelling of 'eczema'; that's how unconcerned with it I have been. I really want to believe that, post-Prolia, I will stop reacting allergically to anything and everything. I don't want to think that Actonel will perpetuate this. Its called denial.
But, of course, any information is really valuable and appreciated.
I was horrified by Daisy's account of bone deposits around her eye sockets and will definitely have my own strange changes and sensations in this area investigated. Fortunately, apart from the sunken areas at the inner corners of my eyes and the itching bones in the vicinity, I have not experienced anything as awful as she has. So please don't worry about me too much!
I think my concerns about all this weird stuff are lagging behind my physical state. It took months before I made the connection between my weird symptoms and Prolia - 9 whole months, most of them miserable. But the eye soçket thing, well that is a bit scary and I'll have it looked at for sure.

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Re: Judy (# 1)

Just to make sure that you understand that taking this drug will not prevent you from the wheelchair. There are many who are in one after taking the injection. Everyone is different of course but do your homework folks and when you decide to take this drug that you know what you are dealing with. I did mine too late but I can assure you I now know more than any physician dispensing this poison. So do not go blindly into this night.

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Re: Judy (# 1)

That sad part about that Judy is that it really does not do what it is supposed to. You need to do some reading on Prolia to understand all the effects. There are individuals who did not have any reaction until many injections later and then had awful affects. It is not a miracle drug at all. Some have ended up in a wheelchair by using this poison. I don’t mean to be negative but everyone should really do their homework before using this drug. I wish I had.

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Re: Judy (# 1)

The difficulty is that it really does not do what they say and the adverse effects get more pronounced. Do your homework on this nasty medication and truly make sure you are ready to accept all it can do to you. There are no guarantees you will not end up in a wheelchair taking this poison. It is horrific. I now have right ventricular heart failure from pulmonary hypertension resulting from increased severity of my asthma directly linked to the Prolia injection and I only had one. All this along with 7 months of pure hell post injection. They can go to hell with their claims as it has not changed anything but made me sick when I was fine.

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Ive had 2 shots and wont have anymore. Have had lots of side effects. It does prevent bone turnover leaving your spine pack with old dead bone so it looks like bone density has improved but its an illusion . As soon as you stop you can have spontaneous fractures in your spine. This drug should be banned!...

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Re: Kazz (# 124)

Well I have been 1 year post first and only injection.It has been horrific. To this day I still have side effects.Every week I get a reminder of this nasty drug. I had the worst allergic reaction within hours of the injection and it just kept coming. I know still have angioedema like signs and my asthma is not stable like it was. I the end it hit my lungs and bronchi..I have ended up with bronchiectasis which my new specialist is still trying to define. I have tried to set up legal action but according to legal counsel I am not sick enough. But I keep watching. I feel bad for anyone that thinks this medication is of any assistance, it isn’t just that some symptoms are not as strong for everyone but I can assure you all of us that have been exposed have some sort of symptoms.

Dawn

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Re: David (# 3)

I have taken 2500 mg of Vit D along with 250 mg to 500 mg of Magnesium daily for years but it didn't work. Oh and calcium 1600 a day. Every bone med has messed me up and yet as I labor through PT for a fractured shoulder, elbow, and wrist...I give up. Going on Prolia again despite growing a bony tumor in my eye socket possibly from Prolia (2014) and a fractured spine (2013) after coming off of Boniva IV (3.5 years) I give up.

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