Prolia Side Effects (Page 5)
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Alexis Says:
 
Would like to know of side effects after Prolia infusion from other persons. Up to now I have none.

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1606
Jan Says:
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I was told the mouth bumps are a heroes- autoimmune influenced by prolia... I take acyclovir when I feel then starting, and when I am in an outbreak- I rinse with a mix from RX that had lidocaine, peptobusmal. No acidic beverages and foods- and I also eat a bland soft food diet... sometimes the sore grow into fatty tissue blobs... it's so annoying and gross, but is manageable. I saw 4 specialists on the first hideous mouth outbreak.... I had never had this before- anytime I get dental work I have an outbreak - even with a simple cleaning... hope this helps... it's a symptom I don't share often, as it's very embarrassing and depressing.... but you sound like what I have endured for a year now...
Maybe this note will help! Hugs...

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1605
Judy Says:
 
Poodle, yes I have been to the dentist, twice, and he really didn't know what it was. Of course, at the time, I never clued into the connection with prolia and had forgotten to tell him that I was even on it. I am aware of osteoarthritis ......I have had 2 arthroscopic surgeries on my jaw due to TMJ. Prednisone may be the answer, however I'm very hesitant to put too much more into my body! I may give my niece a call as she is a doctor and unlike some, is very knowledgeable and does not prescribe drugs unless absolutely necessary. She is not easily influenced by drug reps who give "perks" in order to get you to push their product. I was in sales (not drugs!) so I know how this works and I refused to play the game! Once again, thanks for your feedback. I now will have to wait till next week to see these specialists for, hopefully, some relief. It has been particularly trying times. My husband has had 2 strokes, an ablation, some vascular damage which has affected his cognitive ability and now he needs a hernia operation. Due to the fact that he is on Coumadin, it presents a risk. Guess I should be thankful it's just some problem in my mouth! I'll keep you informed about my future visits with the 2 doctors I see next week. Hoping for a miracle!!!

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1604
Poodle Says:
 
Judy, yes, MS is an autoimmune disease and if one did not have it before one could easily get it with Prolia. Since she has had it and Prolia has messed up more of her immune system it obviously gets worse.

Have you not gone to a dentist for this type of mouth issue. They see more mouth issues from medications than other doctors do. I thought I was getting ONJ so got into mine immediately and it was a muscle from the injection site in my arm that ran all the way up to my mouth. I had dental work planned and it was put on hold as he said "don't come back until Prolia problems are over". Good old fashioned Prednisone Rx will get rid of the sores on your skin. It's bad for bones so don't stay on it for longer than absolutely necessary. I wonder what would happen if you used Mentholatum or Vicks in your nose. Would that petroleum jelly stop the sores???

Joint replacement is for people with osteoarthritis as it eats up the cartilage in between the joints so they rub on each other. It has nothing to do with Prolia or age. It's an unwanted 'present' in DNA. People get them at 45-50 years of age plus. Pood

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1603
Judy Says:
 
Thanks Poodle for the info. The main problem with my mouth is the fact that the taste buds on my tongue are very swollen. This , I guess, is what causes a bitter taste in my mouth. I also get little bumps appearing on the roof and inside cheeks. I am so hesitant to take anything for fear of creating new problems or antagonizing what I already have. I also have sores inside my nose that scab over and then , of course, when I eventually blow my nose , they break off and then the whole process starts all over again! Of course on top of the mouth there's the peeling palms and scaly ,itchy patches on legs and arms. Unlike you, I have not had any joints replaced. I am quite small boned and slim and my bone density is borderline so I really wonder if, in fact, I am even a candidate for prolia. I'm 75. (Just) in good health, otherwise. ( mentally , I'm beginning to wonder after all this!). My doctor runs the osteoporosis clinic at a teaching hospital in a large Canadian city and is known as an exceptional MD. However I'm beginning to question her decision to start me on prolia. I hesitated, read the info she gave me, and was assured that side effects were minimal. Thus, I decided to go with the program. I am now so bloody angry with the drug companies and doctors who they have duped into promoting this drug. I have contacted our government as well as spending 45 minutes on the phone with a medical contact with the drug company. They didn't discount my symptoms but gave me no answers as to whether they would ever go away ,or any solution to treating them. If everything I ate or drank didn't taste so bitter I'd turn to the bottle!! Sorry, I am a bit dramatic! I will check out your suggestion and hopefully the dermatologist and ENT doctors I see next week may have some answers. In the meantime I will continue to clue in others about prolia. Oh yeah, my neighbour who has MS was given prolia last year and had such a bad reaction that she ended up in the hospital for 2 weeks and her MS has progressed significantly! Very sad.

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1602
Diana Says:
 
No, Dr. won't even acknowledge soresm let alone an association withe Prolia. Also my haunches have purple stripes, like a zebra. Back when Crohns was active purple patches on my skin were not unusual, but always had very smooth skin. Daughter says it is because I'm old - but I was old two years and had no preProlia skin issues as Crohns in remission about 15 yrs.....so I remain frustrated. I have seen dermatologists about the purple, but they say they don't know. So, I just keep using essential oils which help a little. Why I can't get a prescription for maybe some cortisone, I will have to ask next time I go in. And yes, taste messed up. I thought myself that was old age. Maybe that's good news it will return.


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1601
Poodle Says:
 
Judy~it's quite obvious Prolia is not for you. Too many problems. Try to get Calcitonin. I use it. It's not a racehorse like Prolia but it is sure and steady. I even fell on my new hip implant and hurt nothing so I know for sure it is working. Problem is, it's old, no money in it for the Drs. and they don't like it. You have to hunt around to different ones to get it. Be well~Pood

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1600
Poodle Says:
 
Judy~Biotene right now for dry mouth. I don't know if I have it spelled correctly. It's something you pickup OTC at a drug store. Be well~Pood

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1599
Poodle Says:
 
Judy~found a med so you don't have to use silver nitrate sticks. There's an OTC version of Debacterol called OralMedic. Be really careful and not swallow any of it as it contains a little sulfuric acid and that we don't want in our bodies or throats. I don't know why a really good DDS would not recognize this on a tongue. They happen anywhere in the mouth and if they are not totally killed they will start growing again. I know the silver nitrate sticks are a total cure and it hurts because you are cauterizing the spots where they are. Yes! BIG OUCH but then get well. Pood

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1598
Poodle Says:
 
Judy~I've been in the scientific field about all of my life if that helps. MD's don't know that much about Prolia as it is too new. Even Amgen now admits it is not what it was supposed to be according to an article in the NY Time. The only things I know of Prolia in the mouth are fungus which you don't have but could it be canker sores? Easily healed with a stick of silver nitrate. Hurts like H and than gets well. Are they so new that they don't know what an old fashioned canker sore is??? Hmmm, confused here~Pood

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1597
Judy Says:
 
Diana, that is not encouraging. Actually I could probably live with this eczema type rash , it's the sores and swollen taste buds in my mouth that are really upsetting me. I can't taste and if I taste at all it's very bitter. My mouth is constantly dry which keeps me awake at night. I also keep getting cold sores in my nose which never seem to heal. Have you been given any time frame on when your rash may go away? I do see both a dermatologist and ENT doctor in another week.

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1596
Diana Kaye Says:
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Have this rash too, still. Almost 2 years post Prolia. Had fantastic skin before that shot.

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1595
Judy Says:
 
Poodle, you seem very well informed about prolia and medical conditions. Are you working in the medical or science field? The reason I ask is that I have spoken to doctors, pharmacists as well as a relative in the field and either they aren't giving me a straight answer about prolia or they really don't know. These are individuals who are well regarded in their fields. I have also spoken to a medical person from the company and the best answer I got from him was that, yes, my symptoms are some that have been noted! No answers as to whether they will disappear now that I have decided to stop any further injections. I would, if I continued, be due to have another injection in January. Guess I'll have to wait and see!! .

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1594
Poodle Says:
 
It would be the same diagnosis tho as it affects the immune system and we all know what Prolia does to our immune system and so do Doctors that will tell the truth about this drug. Rheumatologists often give much more horrid drugs than Prolia and have an Immunologist on hand for help with a patient that has bad reactions. Have you asked yours where is the nearest Immunologist or do you work with an Immunologist? The others were MS which the Docs are now saying is an autoimmune disease so it could be the beginning of that too. You have to get her in and checked out correctly. best of luck~Pood

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1593
RM Says:
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Thank you much Pood for your help and thinking about my mom who is in pain all of her days! I am suffering deeply! I cant stand the idea of her feeling so bad. I need to fix her and find out what is wrong. I will look for an immunologist and Ill keep you posted. Please let me know if there is anything else you find out! She is not in a wheel chair, her neuropathy is not motor, just sensations. Pain, burning pain, prickling, numbness, and of coarse she cant stand shoes.

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1592
Skitty Says:
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Good luck to those who were harmed by prolia. If you haven't taken it don't ever take it. Remember your doctor is supposed to be the gateway between you and a drug that could cause you harm. Unfortunately they don't do that anymore and many take kickbacks for RX of drugs. You have to research carefully and say no to most drugs like this.

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1591
Skitty Says:
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You're kidding right. I will not be posting in this forum anymore since you're blaming hrs for promos that is totally Crazy! How about blaming done others as well? No chance of that I guess since that doesn't fit into your crazy agenda.

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1590
Diana Says:
 
Well, I looked up immunologists here - and there is four - but guess what they treat. Asthma. Sigh.


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1589
Poodle Says:
 
RM~I did a total web search for your Mom's problems. That is the only one that showed up that made any sense to me at least. You will have to go to an Immunologist since it involves the immune system. Can you get Mother in a wheelchair to go to Billings, MT. We call it the 'banana belt' because they have nice weather in the winter. She is the only one I know of but she may know of more. Look her up and call her and ask. Be well~Pood

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1588
Diana Kaye Says:
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I wish there was,a furiously mad icon to post re making money off our misery.

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1587
Diana Kaye Says:
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You are inspiring me to look for an immunologist. After PT surgery I find much better health, except skin, and intermittent pain, could be nerves and vertebrae breaks having a hard time healing. But I'm pulling weeds, cleaning house to a point, much more active. Still having trouble sleeping, but situation at home not good Had baseline DEXA, do not have results yet. Blood calcium 10 which is better than last result I could find of 11.5. Taking Pro Bono with minerals, k, etc and one multi a day that has 1000 iu of calcium. Called Tampa, they said all good. Seeing pain doctor Thurs. although pain improved much. Primary isn't bugging me about taking more Prolia anymore. :) oh, and am able to walk, despite knees. Went to a department store Saturday. Shopped a bit. Probably 3 time in 4 years. Have bad aching In jaw....dentist said abcess but round of antibiotics no help. Of course after this going into 3 year ordeal of one Prolia injection I am on alert for necrosis. Will keep eye on it. But PT surgery made huge difference for me. The more research I do the more I'm finding I see Prolia and other similar high powered drugs can cause PT tumors. They work through altering PTH hormones. All tied in a package.

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