Prolia Issues And Side Effects (Page 6)

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: 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 (# 102)

My experience was similiar. I never could wear wool next to my skin, but with Prolia, I couldn't tolerate cashmere. Finally now, 15 months post injection, I can wear cashmere again.

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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: Sodapop (# 52)

Tell your Dr. to read the side effects. They are well written and diarrhea and constipation are both on the list. So much for medical knowledge. huh? Be well~

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Re: JenjiOz (# 101)

For all the good it did me, I reported everything to Amgen except the hair and nails. Prolia has only spread farther and farther around the globe. Be well~

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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: JenjiOz (# 102)

Polyester is very good because it does not breathe so should keep you nice and warm but what a shame to have to buy all new clothes just because of Prolia. 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: jenjioz (# 98)

It seems to take quite a lot of time for allergies caused by Prolia to go away. They can go away for 6-9 months and then pop right back up again. I have never had hay fever since I lived in Colombia where it was just so overwhelmed it stopped but now it's back too as of this year. Very curious. Maybe I need to go back and start all over again. I have never read of one like yours here on Medschat. You seem to have started something very different and I hope people pay attention to you because it could happen to them too. As I have always said, we are humans, not made from cookie cutters. Hopefully, it will lessen quickly in time. Have you contacted an Acupuncturist to see if that is something they can work on? I know in Clinical Hypnosis it is something we can change for sure. I know many people in your Country so will do a little looking at some of our postings to see exactly what their level of expertise is. Not all is lost yet. Be well~

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Re: JenjiOz (# 101)
I left a message at one international forum asking if there are any like we are in Australia. I will let you know if and when I get an answer. Most are based in England and two of us in the US. Hopefully, someone will respond. I know there is a husband and wife team that go there to train people and they like to say 'we can cure that' and I, personally, do not believe one word of it because I have studied under them as well as many others so I know for sure who can and cannot. Be well~Pood

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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: JenjiOz (# 102)
I have located an excellent hypnotherapist for you in Australia. I checked his expertise well and he is willing to work with you to get rid of those strange and nasty allergies you have going on from Prolia. Now comes the question of how do I connect him to you and are you willing to travel in Australia to where he is? It should not take over two sessions according to my work and it's a common thing we do and generally quite easy. Let me know on how to go from here. Hugs~Pood

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Poodle (# 113)

Hello Poodle. Thank you for going to all that trouble for me. The thing is, I really don't know what a hypnotherapist might be able to achieve for drug-related allergy problems. Just lack of knowledge, I suppose, but intuitively I don't see how they connect.
I àm in south-eastern Australia, with some capacity to travel. Where is the person that you know of? I am definitely constrained by financial issues, unfortunately. I would really want to do some research before putting my trust in a treatment, even a benign one, despite at present waiting impatiently for these wretched side effects to wear off.

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I had my third Prolia injection a week ago, having had no side effects after the first two injections. Despite reading so many negative posts, I continued because my bone density had improved significantly—resulting in a change in diagnosis from osteoporosis to osteopenia—and because I tolerated the previous two injections so well. I had intended to discontinue injections for a year to see what happens to my bone density.

For the past three days, I’ve been struggling with muscle pain/discomfort, bloating/stomach pain and diarrhea. Not sure this is related to the Prolia or my having just reduced my Plaquenil from 400 mg/day to 200 (for Lupus and Sjögren’s Syndrome). I’m assuming that because plaquenil must build up for months before its full benefits are felt, an immediate response to a reduction of same would be unlikely.

Has anyone else suffered negative side effects after having tolerated orokinfor a year?

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Have had the leg and foot cramps too.. not fun. I also will not be getting my next shot even though I have only had one shot. I am going to get a bone density about 3 weeks before it is due to see if there is a difference. I had just recently begun to have really debilitating pain in the lower back and hips which I have never had before. MY shot was 10 weeks ago.

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Re: Lizzie (# 116)

A good resource is the Better Bones Blog. Yesterday it reported on a study out of U of Washington listing the top 7 risk factors for Osteo related fractures.
A low bone density alone was not one of them. Also a European study indicated history of falls as an indicator, not simply a low bone density. Perhaps this information can help you evaluate your.
need. Be well.

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Re: David (# 3)

David, I am using lots of D. My level is very good. I am using all kinds of good food and supplements but the discomfort from Prolia is sometimes almost unbearable in the mouth some days. I did not even really need it. Come to find out, one of the doctors I saw mentioned to me: "Oh, you take Prolia? I have bone mass similar to yours and I had breast cancer too and I don't take Prolia" *(unusual for a doctor to say that to me, don't you think?)Then she turned around and said, "YOu must have hidden acid reflux" or GERD whatever it's called!! I don't even have osteoarthritis. Good grief.

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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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I too had nasty side effects after my third injection that included horrible constipation, fatigue and high cholesterol. My doctor said those side effects were rare and I said no more

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