Does anyone on here have osteoporosis?

dfwtexas · #1 09-18-2008, 02:44 PM

I am very frustrated! My bone density scan shows a -3.5. They say -2.5 shows you have osteoporosis, a rating of -4. is the worst rating you can get. My entire spine is affected. The meds for osteoporosis are very strange, the worst part is I cannot take morning Keppra with it...so basically I have been told I have to choose. I think that the osteoporosis is so bad, I cannot afford to have a seizure and hurt myself. There is a new IV therapy drug, Reclast. However my family doc said it is so new and her patients that have done it were very unhappy with side effects....that she does not want me to try it. I would be open to it, but one of the main side effects is bone pain...I still have so much bone pain, not sure I could handle any more.
I have been trying to get info on possible meds....on the National osteoporosis Foundation's site, they have a similiar forum to this...except it not very informative ...plus apparently I am the only one on the site that has seizure disorders and they don't seem to get it that not taking my Keppra is not an option for me.
Am I really the only person in the world with both these problems? Looking to find someone that has it and taking meds for both, thanks

**Nancy** · #2 09-18-2008, 05:47 PM

Hi ~ It was my neurologist who diagnosed me with fairly severe osteoporosis ... maybe 13 or 14 years ago. He insisted I have the bone density test when he was looking at my records and saw that I had taken Dilantin in the past.
I had no idea - I wasn't "old" enough and I have no bone pain at all. But I immediately started taking Fosamax and in a few years all the bone density was all most "normal" again.

I had no trouble or problems at all taking it with my anti-epileptic drugs ... including Keppra at some time. I simply got up 30 - 45 minutes early once a week, took the Fosamax, sat at my computer or read, did something for those extra minutes - THEN took my morning dose of anti-epileptic drugs.

I'm so sorry you are having such difficulty- especially such pain !! I hope that is solved very soon.

dfwtexas · #3 09-18-2008, 06:50 PM

Thanks, Nancy. My family doctor told me I would have to wait at least 3 hours before I could take my Keppra. She said if I took it earlier than that, the osteoporosis drug would not get any benefit and it would just be a waste.
My pain isn't related to my osteoporosis, it due to a trauma incident from May 2006 to my arm...and while it's better now that I am not having surgeries every time I turn around...it's something I have to live with. Unfortunately, this is the best it is going to get.

I have an appointment in November with both my trauma ortho and my neuroglist...I guess I will wait and talk to them about it.

**Nancy** · #4 09-18-2008, 07:29 PM

My sister takes heart drugs every morning and her cardiologist (simple partial?) told her she could not take the once-a-week bone density meds either. I wonder ???

It's horrible that you've had the pain from TRAUMA and surgeries. I hope that ends very soon. Added to epilepsy -- that really sucks.

dfwtexas · #5 09-18-2008, 07:53 PM

Yes, sucks, it does...actually the entire experience involved a lot, 10 surgeries (and I may still need more), 7 bacteria infections, 1 month in hydrobearic (actually...that was kinda fun, simulated submarine dives!), 2 years of antibotics (18 month (had 24/7 ivs) were via port line in my good arm, rest oral meds) 10 months with "external fixator" on my arm (two halos with rods and pins on outside of the arm and drilled into the bone), my bones in my arm had to be shorten two inches to get rid of the bone infection that was too far gone to heal, 6 weeks with a double external fixator because my bones collapsed and home nurses two times a day to do all my meds, vitals and tests. BUT....thur out that all...I STILL HAVE MY ARM! It was by the sure Grace of God, that a doctor stepped up to my insurance company and would not let them proceed with amputation (he was out of network doc, they were insisting on me going to in network doc and the only one willing to take me said amputation would be my only hope to survive the infections. He only took what they paid, will not take any money from me and tells me that I am his patient for Life. God also brought many caring and special people into my life that did literally everything for me, people I didn't know brought me food, did the lawn, cleaned my house...family helped to pay all my bills since I had no income. Thoughout it all I learn God is good and will provide for you in every need you have. So maybe it doesn't suck when you look at the big picture!

**Bernard** · #6 09-19-2008, 08:18 AM

my suggestion

dfwtexas · #7 09-19-2008, 08:41 AM

Boy, David, everytime I read what you have been thru, it makes me want to tell myself to shut up...you have had it rough. Do you take any meds for the osteoporosis?

Bernard, I have a lot of faith in my neurologist and I will talk to him...I will take him the alternative meds and ask his opinion, thanks

**Bernard** · #8 09-19-2008, 09:24 AM

"my suggestion" was a link to another post related to osteoporosis. Did you follow the link(s)? I wasn't referring to my signature (which is automatically posted at the end of every post I make).

dfwtexas · #9 09-19-2008, 09:48 AM

Bernard..sorry, I am an idiot! I am on daily calcuim supplements...had been on 500 mg since accident and dr upped it to 1500 mg. She also put me back on horomones