I know the feeling believe me. I am a 41 year old male with severe case as well. After a car accident two years prior I assumed it was from that and a bad chiropractor I seen for a wile. For two years my back kept popping and hurting so severely. Finally I went in to the doc and found I had shrunk 4 ½ inches in 2 years. New MRI’s found 10 compressed vertebrae fractures missing 40 to 50% of each. They also found multiple pinched main root nerves and discs as a result. I was tested for everything from hormones to Cushing’s. They doubted the odds that the last thing I was tested for would be it either. They said the odds were better of me winning a lottery than having a rare incurable disease called Systemic Mastocytosis. Bone marrow biopsy tests confirmed it. Treatments have been rough. One of the Chemo treatments they are using to build bone mass seams to be working GREAT!!! They took me off Fosamax and put me on an I.V. bone cancer med called Aredia. I think it’s working great because I can even sneeze or cough and sleep in bed without breaking anything. I swear I feel so sorry for any of you here who suffer with this. I never understood just how important bone mass was and how painful it could be to have them crumble this way. I hope to here more from you all.

John

JohnDiV,
How is the Aredia working for you? You mentioned that you can sneeze and couch without breaking bones. Are you having side effects? Has your bone density improved. Sorry for so many questions but I'm just wondering about how that medication works.

Witchesway,


I understand what you are saying and am starting to get very concerned for you. I WISH YOU WOULD PLEASE CONCIDER SECOND OPINION AT LEAST. I am completely shocked and appalled that they would also tell a person with severe osteoporosis and readings of –3.5 with history of compression fractures to WHERE A SLING???!!! Strapping a sling around your neck I’m sorry for saying this sounds like an incredibly incompetent thing to do unless you want to possibly cause another fracture in your cervical spine. Ask your doctor what he thinks of this therapist’s suggestion. You need a reason for getting Osteoporosis too. Not just surgery.

My best wishes go out to you

JohnD




taape,

It’s good to here from you again. You ask about Aredia. I will be going soon to get a new Dexa scan so we will see. I do have some pains now and then and still have some problems but nothing like before. I am so sure this is working better than anything available for me though. No doubt. Let me briefly explain just a little bit about my cause for continual bone loss. My rare disease sets up in the bone marrow. It is triggered by almost anything and sometimes on a daily basis. It allows at times more Histamine release all at once into the marrow and bones than most people have in their bodies or are incapable of. Afterwards it brings the immune system too and it all out attacks and fights to eat my bone like a disease. It can later move to my vital organs as well. Anyway, this drug needed to be used immediately to not only build mass at an incredible rate but also keep up with the attacks. That’s how good it is. It is primarily used for cancer patients once a month or every other month. I only get treatments every three. Now this is the part where many like me get angry. It would not be covered on my insurance for just Osteoporosis. They say it’s the best for it, but was only approved because of my other diagnoses. I have seen the cost on many of the other drugs even Forteo. One I.V. 4 hour bag pump every 3 month costs around $2,500. Do the math. As far as the side effects I wish I could be honest. I am on so much stuff and my disease too, all have the same side effects or symptoms so I find it hard to say honestly. Even still I would choose the effects over the constant breaking.

Thank you so much for your interest and concern. Good luck to you too!!!

Sincerely
JohnD