I Am Only 31!!

[taape]

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.

[witchesway13]

The doctor said i have severe osteoporosis. My hips appear to be ok. Can i take fosomax and still complete the fusion in my neck?? I heard something somewhere that fosomax will make healing harder. I am not sure about the truth of that. My doctor said the fracture in my T3 was old and healed, but i have severe pain in between my shoulder blades and a hump on the lower back of my neck. My collarbone on the left side (the side of my weakness and pain in my arm) is bowed out and there are constant muscle spasms in my arm and left side of my shoulder and neck. The collar bone issue was present before my surgery and i thought it would go away after, it did not. It is VERY swollen above the collarbone and my physical therapist said my collarbone was malaligned?? I pointed out that it crackles and pops when i move it forward at all, he said to wear a sling? I do not see my doctor until August, and the pain in my neck is getting worse more than not. More bad days than good lately. When i went for my 6 week check up he said it looked fine on the xrays. Would a failed fusion show up on an xray this soon, or was he implying that the hardware was still in place (cage, screws, and plate)?? Thanks for any help.

[taape]

Hi,
I'm no expert but I do know that a friend of mine with severe osteoporosis had a lumbar fusion (where the severe osteo was located) and continued to take Forteo during and after recovery. He said that his surgeon told him to continue his osteo treatment. I know Fosamax works differently though so maybe you should contact both your surgeon and your osteo doctor about whether to continue with the Fosamax. I would think that you would want to continue treatment so no bone loss occurs.

[Johnsternow]

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

[Jade4u]

I was also diagnosed with osteoporosis at a young age - 28.

I had not been taking any steroid medications and my parathyroid functions came back normal. Perplexed, my doctors blamed the osteoporosis on my Depo-Provera injections. I quit the Depo shots and began taking Fosamax 70mg once weekly. After two years, there was very little improvement in my bone density.

Several weeks ago, I finally went to see an endocrinologist and asked to be evaluated for Cushing's Syndrome. I felt that I was experiencing many of the symptoms associated with this condition, one of which is bone loss. Surprise - it turns out that I do, in fact, have Cushing's Syndrome. In my case, it's caused by a small, benign tumor on my pituitary gland. I'm in the process now of choosing a neurosurgeon to remove it.

Nobody thought to test me for it before, because Cushing's is quite rare. In fact, my endocrinologist even raised an eyebrow at me when I told her that I thought I might have it. The funny thing is, I would never have learned of this condition if I had not been searching the internet one day and accidentally stumbled upon some information about it.

Just thought I'd share my experience with you. If your doctor can find no other cause for your osteoporosis, you might want to consider asking him/her to evaluate you for Cushing's Syndrome. Best of luck.