Extensive Osteoporosis - Osteoporosis Message Board

tiredbunni · 11-28-2007, 01:41 PM

Hi, I just got back from my GYN today and heard what my scores were last year. I really didn't have time to hear them last year as I was dx with MS and placed on corticosteriods IV at the same time I was dx with Osteoporosis. I choose not take Boniva as my insurance would not cover it. I didn't call about getting Fosamax either. I just decided to stay on HRT.

Now, I heard my scores this morning. I sure he said -2.5, -3.5 and right hip -4.0. He said I had extensive osteo and needed to start of Fosamax. I have GERD and know this medication can cause me trouble. I have a difficult times with meds. My body is still adjusting to Avonex injection weekly. I have weakness in my legs and balance problems for the past 15 years. I was disabled in 1993 with ME/CFS. I don't know how many times I have fallen. Thank God for no fractures. It is a miracle. I know my Z-score was low and concerned my doctor. My mother has Osteo also and I am small bone. I have also lost 20 to 30lbs of weight that put me in anorexic state several times over the years It was cause by Gastroparesis due to MS.

My mom is going to bring her Fosamax to me as she been on it for six years without any improvement. She is now going to take daily shots to build bone. I will try it and see what happens. I hope I can tolerate it. It doesn't look like my numbers are very good. And I am already using a walker because of great fatigue and weakness. I can do weight lifting but cardio I can not maintain in my target zone for more than 5 minutes. This is not due to deconditioning. I tried for six months to bring my body into the zone and all I accomplished was raising my resting pulse from 60 to over 90bpm. I can still dance but have to be careful of my back. It hurts really easily. I swim in the summer time. I can't walk around the block. I barely make it 50 feet to my mailbox with being exhausted.

I see my neruologist next Thursday to give a report what is going on with MS. I am going to tell him about the bad back pain. It isn't just lower back but down my spine. It hurts to the bone. I know I have neurological problems with it combined with the Osteo. I don't know which is what. I just know I really hurt.

I have to eat a balance diet- low fat for MS. Of course they want me to cut out some of the dairy. I have to balance between the two. I eat plenty of fruit and veggies. I like to eat spinach salads mixed with fruit and nuts. I also like wild salmon and eat it. I take a multi-vitamin. I take calicum from Osteo-Procare which has 1200mg of calicum, D-3, magnesium... other good things.

Is there anything else I can do to help with my bones? I appeciate you help.

Thank you.

Bunni 54yrs in SC

taape · 11-28-2007, 02:10 PM

Hi Tiredbunni,
Sorry to hear that you have extensive osteoporosis as well as other medical conditions. I would think that you would want to talk to the doctor who diagnosed and treated your GERD before you take oral bisphosphonates like Fosamax. It's can be very irritating to the stomach and GI system. i was only able to take 3 Fosamax pills and had to get off of it immediately due to stomach problems.

Is Avonex the medication for MS? You probably already know this that corticosteriods deplete bone but if you have to have that type of medication then you do, and will have to work around it finding a treatment for osteoporosis. You might also ask about being put on Forteo-daily injections. It does work as I took it for 2 years and never had any noticeable side effects and it doesn't go through your stomach.The problem came after I got off of it, I lost the gains I made.

DesertBloom · 11-28-2007, 02:28 PM

Hi tiredbunni: Sorry about all the problems you have. Taape is correct on all her remarks. I would ask the dr about Forteo (daily injection) and see if you could try that since it doesn't have any effect on your gi tract. I've had great gains from it and will be on it another 9 mos or so. I haven't had any side effects either, and it sounds like it may have more benefits for you than just building new bone. You may have some other spinal problem going on, because osteoporosis doesn't usually hurt until you have a fracture. Since you are seeing a neurologist, ask what the source of the pain is. Have you had an EMG? Do you have any radiating pain from your spine down your legs? If so a nerve may be involved in whats going on. Is the Avonex helping your MS?

Here's a link on Forteo if you want to read it. Let us know how things go with your appointment.

[url]http://www.ccjm.org/pdffiles/DEAL703.PDF#search=%22forteo%20and%20ost eosarcoma%22[/url]

kajolyn · 11-30-2007, 10:33 PM

i saw your note,i took forteo for 3 months,developed severe heart burn,the
same as when i took fosomax.i have a t score of -3.68/dr put me on forteo,
but when i developed the heart burn dr said to stop if it was that bad.also,
dr did blood test,i have no vitamin d in my blood which means i don't absorb
calcium.i am concerned about long term effects of forteo,after reading about
dead jaw syndrome from taking the fosomax. i had a scare from that when i
needed gum surgery,after 6 years i still had fosomax in my blood and my jaw
bone was disentegrating.had to have a special blood test that came back
low risk for gum surgery and dead jaw syndrome.now i have stopped the
forteo to get my stomach back in order and don't know about going back on
it,for fear of future problems.has anyone else had any of these problems?
kajolyn

taape · 12-01-2007, 12:45 PM

Kajolyn,
I didn't have any side effects to the Forteo in fact it was prescribed because it didn't go through the GI system. Are you sure that was causing your stomach problems or could it have been lingering side effects from Fosamax or another medication you were taking. Since these medications are prescribed for life most of the time I don't know how anyone could take bisphosphonates indefinitely. Even if you don't have GI problems when you start, if you take it long enough you probably will. I wish ther were more options for treatment available.