I have severe osteoporosis. My doctor said Prolia was the only drug to take. It had severe side effects. Initially it caused horrible back pain, lfushing, and forgetfulness. I thought I could handle it if it would save my bones. After the third infusion I got shingle like pain on my arms and back so severe I could not sleep. Agony. No rash, just intense pain. I cried daily it felt like someone had taken a potato peeler and took off the top layer of my skin. My doctot told me to disconintue it and said I am his only patient who had this reaction. Now I am taking nothing. He said that reclast gives you a 2% chance of spinal fracture help .. maybe. Lots of side effects from reclast. He said that I could just take my chances although I have a 16% chance of a fracture. After all was said and done the Nurse practicioner told me that Prolia does not work and forteo seems to be the only drug that does .. however I am on a blood thinner and that is not a good combination. I am taking D and Calcium My bones got WORSE after three Prolia infusions. I am sick at heart the prolia may cause other problems. I had to have a root canal a month after the last injection and am on alert for jaw necrosis. This is a nightmare.View Thread
You are a doing a wonderful thing answering questions on this discussion site. I learned more from you in these few sessions than any other doctor has told me. I am deeply appreciative for all your help and encouragement. I am going to take your suggestions... talk to my cardiologist next week about Forteo and get in a support group. Thank you SOOO much! Marilyn Canandaigua,NYView Thread
My doctor recommended my taking Reclast also. I have not done it yet. I understand there is excruciating bone pain in the beginning. Did that happen to you? Also did the eczema occur from the Reclast? Did you have the fever long? These drugs are so scary.View Thread
Hello... I got the results from the doctor's PA via my chart today. My T-Score is -3.5 in the spine and -2.9 in the right femoral neck. No other test was done. Should I be worried? Not exactly sure what this means. Again... Thank you I tried to post this but was not certain it was going through to you... but since I wrote it .. did some research and it seems I am in fact very bad off ... I got so upset I threw up.. and still nauseated. In a way maybe I was better off in a fool's paradise. I think I am going to check out soon after reading the TScores.View Thread
Hello... I got the results from the doctor's PA via my chart today. My T-Score is -3.5 in the spine and -2.9 in the right femoral neck. No other test was done. Should I be worried? Not exactly sure what this means. Again... Thank you!View Thread
Once again thank you. I wrote to my doctor on My Chart regarding my scores and will let you know. I do know that I have been to 4 endocronologists and they all said I am in bad shape ... one in florida also. So bad that the nurse came over and hugged me when I walked in the office (I did not know her) (in florida) and said "I feel so sorry for you" I wanted to kill her.
Every doctor SCREAMED at me. All of them and told me 'take a chance' and I did... but was reduced to tears.
I am concerned about what you told me about the tums affecting my heart!!! I see a new cardiologist the middle of this month as we just moved from Rochester, NY to Canandaigua, NY and want doctors here.
I have been to a center like the one you are working in. I waited 6 hours in the waiting room and waited 2 years for an appointment. When I finally got in the woman talked to me and she was pushing drugs although I have GERD the new drugs were not out yet. I asked to talk to the doctor with whom I had an appointment and she said "oh no, you can't see the doctor ... you need an appointment for that.
I went back 4 months later... first appointment and this time waited 4 1/2 hours and I saw the same tech and she said the doctor was not there. I was so upset and never went back. This doctor has a really good reputation... too bad your can't see here. There were about 85 women in the waiting room .. so I went to the endocronologists and quite frankly do not or did not like any of them. the last one who 'gave me the verdict' of my scan I was shocked and cried and he told me to see another doctor. I did and this one was better but when he saw that the prolia did not work he did not want to see me again and pawned me off on the P.A. who told me to start the Reclast in may.
You are very intelligent and help a lot of people in these discussions I am sure. Once I get those tests back I will let you know. I just know that when I had my bone density test the girl at the clinic looked at me in horror and I got really scared.
Denial is a stage you go through I beleive .. I am trying to take charge of things now. It is difficult when you don't have family and no one to help you who loves you.
I don't drive as I am too weak to shift from park to drive and have to depend on others and it can only get worse.
I appreciate all your input and knowledge and will get back to you when I get the results.View Thread
OMG you have a wealth of information and a lot of questions I don't know the answers to. I just had spinal exrays and they were fine .. thank God. I don't know the T-Score. I have lost 2 1/2 inches in height. I am afraid I did not know what questions to ask and actually afraid to hear the answers in a way. IF I could hear. Severely hearing impaired. I usually take someone with me. Ashamed to admit when I hear bad news my heart goes out of rhythm and I wind up in ER but I am getting more scared NOT to know. But the anxiety is probably going to kill me first. When I see my doctor next week .. sadly not the bone doctor but my internist I will see if he can give me the T Scores and any other information. I wish I could calm down but I am a nervous wreck over this .. maybe everyone is. Appreciate your help and input ... very much!!!!! Will keep you posted.View Thread
Thank you for your input. to answer your questions No broken bones for me Parents never broke hips but mom was diagnosed with osteoporosis when it fact it was multiple myeloma and found out 2 days before she died. I am checked for it yearly. Doctor never told me T-Scores just said severe osteoposis and 16% chance of a fractrure.
I have GERD and have had esophageal strictures that were ballooned out.
medical conditions are AFIB, AFLUTTER 1st degree AV block. Have had heart restarted a few times. . and many hospitalizations.
Hypersecretion of bile after gall bladder removal.
menopause at 57 .. no symptoms .. just stopped.
saw 5 endocronoligists... all said prolia .. my internist is totally against bone meds as is my oncologist friend my late husband was a doctor and he saved his life and told me to trust him before he died.
I take 4000 calcium a day and 3000 D3 a day. Walk 1/2 hour a day Drink Milk eat cheese and cottage cheese and D containing foods.
Drugs I take are Propafenone, Dilitiazem, Prevacid, warfarin, Ativan.
Doctor told me Forteo was not an option because of my heart. I am on strong (very high doses) for my heart.
I am 68 and very anxious and usually spend 5 months in florida but this year some illness in the family kept me from going.
I think I answered your questions. I am not good at this...
My doctor said I should try Reclast but after all the symptoms I have read about it .. and the frightful experience with Prolia .. my doctors say and 3 others ... that the pain with reclast in the beginning is excruciating and then goes away and feel I can't handle it and said for a less that 2% chance of MAYBE stopping the bone loss I am taking more risks taking the drug.
I need a lot of dental work. I have two wisdom teeth that are impacted at 68 and no oral surgeon will touch them...
I am in a quandry. I appreciate your help.
I get so scared that I wind up in ER a lot with heart issues. I have no family at all. Not sure how to proceed. See the endocronologist in May for my decision he says. I don't know what to do.
Warfarin has been a big issue as it is never stable although I have eaten the EXACT same meals every day for 7 years. EXACT (boring as hell) it fluctuates all over the place ... do not understand why,, and doctors worry about clots. appreciate your help or any help ... I am scared and sad about this whole thing. , Right now my ankle is filling up with fluid as the day goes on and see a doctor next week.
It seems it is always something .. inside I feel vital' but my body betrays me.
From all I have heard from friends in my age group Advanced osteoporosis... have seen no favorable results and then my doctor tells me forteo is the best. Another doctor told me zometa but quite frankly the other doctors I talked to were not optimistic about any of these bone drugs... my internist and my oncologist friend said it is a lot of grief for very little or no results and who knows what side effects can happen as it has not been tested long enough. Dental work is another issue. Very sad about this....View Thread