Prolia Side Effects (Page 40)
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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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2379

Re: Judy (# 2373) Expand Referenced Message

I know Judy. You and I have been here for quite some time. Never totally 100% well after all this time. How long do we have to wait to be totally clear of this poison. It's good to know that your WBC is becoming more normal. That is good news as is a clean break. A teen can fall and break a wrist. It doesn't have to mean the bones are really bad. I see young adults and teens at the orthopedic surgeons all the time with casts on. Fact is bones can break with a fall. It all depends on how one falls. One falls and the wrist gets most of the weight. it's going to break no matter what. Only babies have soft bones. When bones break for absolutely no reason, then we have a problem and that is when the medical community should become worried. I wish I could have the medication I was on back but the FDA pulled it and said it didn't work well. That's untrue. It worked well for my Mother and for me. Even in the 90's when I asked my Dr. about it he replied it doesn't work. Get your wrist well and get your tooth in and you will be happier. The one that did my implants put too much bone in and it is now sticking out of the side of my gum. I thought my implants were failing because of the pain in there and it was just him putting in too much bone. Ohhh. What we have to go thru because of Prolia. Be well~Pood

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2378

Re: Sunshine1960 (# 2376) Expand Referenced Message

I'm so sorry you are another victim. It takes quite a lot of time for Prolia to clear the human body and one tiny molecule will always be with you but will never cause you harm. You should be working with a Rheumatologist and a Pain Specialist to help you over this hurdle. There are acupuncturists that work on the body. It seems to work even tho I don't understand it and another is hypnotherapy because the 'inner mind' that runs the body can be changed. If one has only one shot of Prolia, the Prolia is gone in 6 months but that does not mean that the side effects go away. I know - BAD News! You will start feeling better month by month. Treat yourself kindly and get the very best medical support available. There are natural ways to help severe osteoporosis (you did not mention your T-scores). Dark leafy green veggies are a good help as is bone broth. Keep up with the calcium and if possible take it with an acidic liquid such as a citrus juice. When you start feeling better, there are other medications to consider if you have not yet tried them. There are the bis's and hormones. Bis's have a few problems of their own but not like Prolia. There is the jaw issue and the broken femur issue. The hormones will not cause you harm unless you have had DVT's or PE's in which case you can never have them. You will get better. I promise. It's a long road but you can and will make it. Be well~

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2377

Re: Sunshine1960 (# 2376) Expand Referenced Message

How refreshing, a Dr. with the good sense to discontinue Prolia; most Doctors don't even want to consider it.

You are fortunate.

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2376

Re: Lynne (# 7) Expand Referenced Message

My Dr. After the 2nd shot took me off prolia. Hair loss,hands feet spasm,migraine,pain is worse i have severe osteoporosis and numerous compression fractures. Caterac sugery,oral sugery taking month's to heal. White blood count extremely high. Feeling sick all the time. It was not my choice to stop the prolia like i said in the beginning my Dr stopped it.4 month's past my last injection no improvement.

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2375

my doctor wants me to prescribe prolia injection for osteoporosis. I am a dialysis patient and have a hypotheroid. would like to know if dialysis patients are using prolia

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2374

Re: JenjiOz (# 2370) Expand Referenced Message

You just told my story. I always swore I would never take any of these meds.
When I was first diagnosed with Osteo.
I refused meds. It was when I had vertebral fractures that I got scared. No Dowager's Hump for me ! That left me vulnerable. Now I am resolute, no meds for me.

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2373

Re: Poodle (# 2372) Expand Referenced Message

I was at the hospital today for a follow-up with my wrist and to get a new cast...purple! As I suspected I was visited by someone from the osteoporosis clinic re bones, meds etc. Once I told her what I had been through with prolia and what I am doing now[ diet & excercise] she made a very hasty retreat and wished me well.
Unfortunately I'll have to wait for the exercise part besides wiggling my fingers every hour! That's on top of the last year dealing with a very painful rotator cuff tear and biting with no front tooth thanks to an infection in my mouth due to prolia.

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2372

Re: Hazlat (# 2371) Expand Referenced Message

This is a bis, exactly the same thing as Reclast and Boniva. There is a large class action suit of $63 mil for broken femurs with it and also has the same effect on the jaw bone that Prolia has. I tried the Reclast. I was delirious for over 2-3 months and not well for the entire year. Then, after the bone scan, it did zero. I can only hope and pray that you have better luck with it. Be well~

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2371

Re: Judy (# 2367) Expand Referenced Message

Try a pamidronate infusion it has helped me as I have Osteoporosis in my spine with 5 fractured vertebrae ( my gp misdiagnosed me with a pulled muscle!) this has taken me out of a wheelchair and walking again, just had very mild side effects after the infusion for a couple of days, i have been onthis for just over a year now and have had 4 infusions.

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2370

Re: Marion (# 2368) Expand Referenced Message

It took me a full 9 months to make the connection. It wasn't even denial, just naivety, As a professional researcher I feel so stupid. I suppose we all feel pretty desperate after a diagnosis of osteoporosis. The wretched drug fulfilled it stated purpose and my bones have benefited for now. I think I was so freaked out by the prospect of the full-on 'dowager's hump', and so terrified of the hideous prospect of further fractures, that my critical faculties simply abandoned me. I was pathetically trusting in a time of exceptional vulnerability. And I'm usually somewhat skeptical!

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2369

Re: Marion (# 2368) Expand Referenced Message

Not informing of known, dangerous side effects seems derelict to me.

This points out the need to be an informed Patient.

Me, I knew of the potential side effects, but because I was scared and vulnerable, I agreed to take it.

This decision was based on emotion;
intellectually, I knew better.

Never again will I do such a thing.

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2368

Re: JenjiOz (# 2360) Expand Referenced Message

Hi again. I actually do know 2 people here in Oz with problems but who have not connected their issues with Prolia. One who is 77 has necrosis in the jaw and says her jaw has been eaten away but never dreamed that it could be an adverse effect of something that was supposed to help her bones. It's a worry.

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2367

Re: Poodle (# 2358) Expand Referenced Message

Poodle, re my WBC. Because it had been on the high level my Dr has, in the last months done 2 more tests. It has now come down and is near normal, thank God. As to my bone density, it is not good but not considered "at risk". My GP is very hesitant to have me take any meds due to my reaction to Prolia as well as other drugs( not for my bones) . She is having me eat a high calcium diet as well as exercise. Of course now, because of the wrist fracture she may think differently.
I see the ortho Dr tomorrow and am anticipating some flack...maybe not! The Dr that put the cast on did say that I was lucky ,at my age, that it wasn't my hip. It was also a clean break that didn't need to be pulled back in place.
We women are such Guinea pigs when it come to drugs, hormone therapy, bone meds, calcium supplements. I'm trying to advocate for my own health and it's difficult because you read and hear such conflicting info!
Thanks for your concern and feedback.

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2366

Re: JenjiOz (# 2360) Expand Referenced Message
At least with Actonel there is a large sum for class action lawsuits. I don't know if it is world wide or only in the USA. When my Dr. wanted me to take it, I mentioned the class action suits against it and he just said that drug companies get sued all the time. Well, only if they do HARM. I told him I did not want to be one of them and that ended the discussion. I have had nothing broken or any other bone problems after stopping the Prolia except for the fracture IT caused in my spine. When I have surgeries for new joints. my surgeons are not complaining about the state of my bones. Something must be working! Pood

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2365

Re: Marion (# 2362) Expand Referenced Message

I caution against another inj. My thigh and jaw were unbearable also, and those were only two of my side effects.
This is a highly toxic drug. I regret the weak moment that I agreed to take it.

When I informed my Dr. that I declined any further injections, he was understanding, but painted a bleak picture for me. I will take my chances.
Life on Prolia is no life at all.

I have noticed in the ad, they are including more side effects now.

Perhaps because of the complaints??

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2364

Re: Ann (# 2361) Expand Referenced Message

Same with my Dad! Never had a broken bone in his life until 4 days after that stupid shot! The prescribing doctor needed to be thrown in prison. Dad had 3 medical reasons that are warned to NOT take Prolia. My mom, dad nor brother would listen to me or read the articles I showed them before dad got the shot. They insisted that he get it because thats what the doctor said he needed. He was 81 years old and never had mention of osteoporosis or anything. The doctor just thought he needed it just because! $$$$$????? And my brothers wife is the office manager of the office where the prescribing doctor is so DON'T MAKE WAVES! Yes, they got mad at me for bringing up the articles and saying I didn't think dad should get the shot. So they secretly took him and got it. He got sick and was stumbling by 2 days after, fell and never recovered. All kinds of issues, new troubles almost daily. Died 8 months after getting it. The doctor had him on NO calcium and he ended up with heart issues. My mom was giving him a Tumms each day thinking that was enough calcium #1, it was the wrong kind of calcium and was doing him NO good. His levels got extremely low. Was in the hospital nonstop. I'm so angry to this day. And I always will be. NO ONE will listen. I wrote and called FDA, Amgen, etc. That was a joke in itsself.

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2363

Re: Marion (# 2362) Expand Referenced Message

Please do not take another injection. It is poison to everyone.

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2362

Re: JenjiOz (# 2360) Expand Referenced Message

Thank you so much Jenny. I'm in a quandary about stopping the stuff as I'm just about due for another one. It's the aching jaw and thigh bones that cause the most distress. I know the GPs will just say 'do you want a hip fracture' I'm 79 and I can do without all this pain at night time. I've always been active with a big garden and so forth until we moved into this retirement apartment in June last year. We have a physio onsite so I'll get an appt to see him next week and see how we go with that.

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2361

Re: Judy (# 2357) Expand Referenced Message

I have had three fractures since I took one injection. My dr.'s also said no one else had a problem. I am 76 yrs old and never had a fracture before. Can't get anyone to help me.

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2360

Marion (# 2348) --

Hi Marion. The reply I sent to you a few days ago is lost in the ether. Sorry about the delay - perhaps a long weekend glitch or more likely because I posted after a big night out in Sydney. Thank goodness I can still even do a 'big night out' some of the time.

I'm in Australia, in SE NSW, and I have just experienced one of the worst years of my life, in my opinion due to Prolia. My GP and endocrinologist both say they have never had anyone complain of severe side-effects before me.

My most apparent issues have been multiple skin disorders - several kinds of rash, most of which itch or sting terribly, and/or look hideous. There have been other things - a basal cell carcinoma near my eye which took a very long time to heal, exacerbation of my pre-existing perennial rhinitis and rosacea, various unexplained pains, and allergic reactions to a variety of ordinary things that had previously never caused problems (my favourite jewellery, an ordinary local anaesthetic, etc). Also higher cholesterol levels. My iGe (immune system antibodies reading) is through the roof - normal x 13! I cannot find any other explanation for this.
My GP mentioned this to an Amgen rep, who sent Adverse Events forms for us both to fill in. I attached a detailed list of all the unusual health-related issues I have experienced in the past year (2 injections' worth, unfortunately). These, I believe, have been forwarded to the TGA.

I have just commenced weekly Actonel tablets, (2 so far), and my previous symptoms continue for now, although from time to time it seems they are tapering off. So far it seems to be 'two steps forward and one step back'.

It seems I have been very fortunate not to have been hit with the full range of side-effects in the way that many others seem to have been.

We feel somewhat isolated here, due to our relatively small population compared with North America, so the numbers are also low. BUT look up Prolia Adverse Events on the TGA website, if you haven't already, and you'll see that we're not alone. It's not as though this information is not available to prescribing practitioners either.

I wasn't happy about taking Actonel after this horrible experience, but I have read extensively about the 'rebound effect' which makes it very likely that we will be in a worse state than ever after discontinuing Prolia without replacing it with some other powerful drug. I was already aware of this possibility, but my sister, who lives in Switzerland, saw a TV program about this very issue, and she attached some articles from scholarly journals with supporting evidence. And now it seems that in the USA Prolia injections are labelled with the relevant warning.

I suppose neither of us knows personally anyone with similar issues, but we are out there!

Best wishes,
Jenny

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