Prolia Side Effects (Page 78)
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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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Poodle, I did try the yoghurt and it did relieve my tongue to some degree. I still have some swollen taste buds but I noticed that I am ,ever so slightly, beginning to taste a little. However this seems to be quite sporadic and just when I think there's a light at the end of the tunnel , the sores flare up again. I've never heard of menthol jelly before. I'll check it out. Is it Vicks? I'm afraid it may sting as they are open wounds that scab over but as soon as I blow my nose, of course, they break away and the whole process starts all over again. ,Difficult not to blow as I also seem to be more congested since the injections to the point where I'm constantly clearing my throat and have a runny nose.hopefully the ENT dr will have some answers! I see her tomorrow.

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Judy~did you do any of the 'home' remedies and did any of them help the slightest with your mouth and the menthol petroleum jelly creams for the nose? Just curious if anything worked even a little bit. Be well~Pood

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Judy I have been off of Prolia for almost 2 yrs. and the excema started right
after my first injection of Prolia. I have not had any and will never take it again.

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To Janie, re the eczema, I finally saw a dermatologist this week and he did confirm that it is, indeed, eczema. However said he didn't think it was a result of the prolia. I do! I'm not planning on continuing with any more injections. He gave me a prescription for pdp-desonide which is an anti-inflammatory steroid cream and as well told me to slather my body with an anti- itching balm, Lipikar ( La Roche- Posay) . Pricey but I find it better than eucerin. Now I just have to get rid of the sores in my nose and mouth. I see a ENT dr. tomorrow.
Don't know if you're still on prolia but if so, maybe that's why you are still getting eczema. I'm really hoping mine will subside once the prolia is out of my system. I would be due for another injection in January. I can only hope!

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The lady that has the eczema. I have had this since I started on Prolia and the doctor kept telling me it had nothing to do with Prolia. After 2 years off Prolia I still have weekly problems with eczema. I have to use an ointment that my skin doctor prescribed for me plus keep Eurecin lotion on my legs all the time. I don't believe it will ever go away but hopefully it will. You can buy Eurecin lotion at any drug store. It keeps your skin moist and that is what you need for eczema.

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Thanks all I will report it and good to know that this on again off again short of breath should fade after 6 months it's scary, one day I'm fine and next I'm fighting for breath not fun, it does not feel like heart trouble it's different feeling

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Absolutely report it. Someone has to be our advocate so it might as well be us. Not only did I tell my GP (who wasn't the MD to prescribe it) she called me a good detective! I also submitted a complaint to our government and called Amgen and spoke to some medical person. He took down all my info, my side effects, my Dr's name etc but gave me no suggestions as to how to alleviate my symptoms or how long I'd have them. I am now warning any prospective users to research as much as they can before making any decision. In all fairness, I have talked to others who have benefited with no side effects. Lucky!

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I disagree with your Doctor. Report your side effects to the FDA. It is not your docs body, it is yours & the shortness of breath won't go away for another 6 months, if then. After you report it to the FDA, call Amgen (Maker of prolia) as well. Call
1-800-772-6436 to speak to a pharmacist. It has now been 15 months since my one & only injection of this devil's drug & am still having horrid side effects. It took 3 to 4 months to convince my doc of what I was going through. After the 6 months was over he reported it to the FDA on my behalf. Doctors are not aware of drug side effects & could care less since they are getting paid by big pharma to push their drugs.

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Just got thru my 6 month hell with Prolia everyday felt like I had the flue. Thought I was thru started feeling better for a out 2 weeks after it was up but now have shortness of breath and when I talked to my dr and I told her she said it could not be because of Prolia. You will not see side effects like this until after at least two doses, it planely says on Prolia website that shortness of breath can happen. She did not want me to report it to Prolia till I have a cardio work up . I understand it could be cardio however my eeg showed normal ,but I went ahead and schelduled a work up . I think it is due to Prolia. It could have put me into heart failure, not sure but this is FYI for all.

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Thanks Poodle, funny you should mention yoghurt as I have been eating it and particularly holding it in the back of my mouth. Unfortunately because the back taste buds are the ones that taste bitter , the yoghurt can be rather unpleasant. I knew that herpes could cause canker sores but had no idea about it affecting the taste buds. As I have been getting cold sores in my nose it's all beginning to make sense. I'll certainly take all this "ammunition " when I see the 2 specialists next week! Just hoping that once I hit the 6 month mark when I would have received my next injection the symptoms start to subside! Or maybe I'm a dreamer!
As to Florida, we have, for some years now, been renting a place at Anna Maria Island which is on the gulf coast just south of Sarasota. A lovely spot...very laid back. I do know that many Canadians, out of principle , are deciding not to go now. This will probably be our last year. I just didn't want to spoil our children and grandchildren's winter break.
You have been a fountain of information and I now feel well informed when I see these doctors next week. I only wish the drug companies who use women as Guinea pigs and make big bucks because of us would get their dues! You certainly ,from time to time ,hear of class action suits!

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Judy~did some searching on the swollen taste bud issue. It says home remedies are to cover tongue with plain yogurt, use ice but not enough to burn mouth and also honey. Also said it can be a Herpes Simplex I, which is a cold sore on the mouth area except it acts up on the taste buds and makes them swell. Do NOT eat or drink anything acidic. That could well be an issue caused by our lovely poison Prolia. I think you would have a lovely time in FL, just don't go down to Miami. I would not go farther than Boca Raton or the gulf side is very nice and safe. Problem in Mexico is the water and I have seen the maids filling bottled water from the hose outside the hotel - nice! We are still under the Obama Administration until January 20th I think. Canadians are always welcome in the US. Some of our elite are wanting to move to Canada too.

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Poodle, actually I'm in Canada so our summer has ended! I must admit , though , that November has been unusually warm....global warming, I'm sure.
As to my husband, we will be seeing his cardiologist in January. Because he had a second stroke after stopping Coumadin to have a tooth pulled they are having to make a decision as to what to do. I do know that when he had the ablation where there is some cutting involved he had stayed on his dosage as long as his INR was 2-3. When they had finished the procedure he was given heparin and everything went very well. Of course, surgery in the abdomen is a hole different ball game. I'm hoping we can wait till the spring as we have booked a holiday for 3 weeks in Florida for March. That's if liberals like us will be allowed in th USA! We are seriously thinking of cancelling and either going to Mexico or Cuba but not sure if we would be penalized and lose money. Our dollar is only worth 74 cents American so it kind of hurts!
I have so much confidence in his cardiologist and was talking to some women in my knitting group who said the surgeon is top-notch! There is also a hospital nearby (Shouldice) which is world renowned for just doing hernias. So that's an option. It's like a private club and people come from all over the world. Our health care covers it for Canadians.
Lots to think about. Will check out the stuff you mentioned I could get in the drugstore for my mouth....if it's available here. Merci!

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Judy~I am quite sure hubby will have to stop blood thinners about a week before surgery and then they put them back on them in 12 hours. They cannot have us bleeding out during surgery if this is a major surgery. Also know there is another forum for ladies in Australia. I happened upon it one day. You are by far not the only one in your country complaining. There are lots of ladies complaining about the horrid side effects. Don't ask me how I found it. I was just searching around about Prolia and ended up in Australia by some strange fluke. The consensus seemed to be that when the Prolia wore off they would go natural with calcium/Vit. D and light weight exercises. It's about summer for you so go outside and get some real Vitamin D for about 15 minutes/day. It's much better than any supplement plus you can use those 15 minutes to de-stress a little. Pood

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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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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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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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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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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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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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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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