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Fibromites with Osteoporosis

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Posted 3/29/2010 5:15 PM (GMT 0)
Awhile back I posted about the link between fibro and osteporosis. Some research

showed that fibro hinders the production of a growth hormone limiting the production

of bone. 

My osteoporosis is getting worse. I'm at -3.9 in my lower spine which is severe. I

am beginning to think that bisphosphanates do not help me and might be harmful.

I have been taking Boniva for seven years and my osteporosis is worse.

Last week I went to see an oral surgeon for a consult. I have teeth that have broken

off at the gum line. Because I have connective tissue dieases it could be connected to

that. The oral surgeon believes the bisphosphonates are bad. He will not pull my

root tips because he has seen cases of bone necrosis (bone death) of the jaw, where

extractions don't heal and cause other teeth to fall out. Thank goodness I'm not in

pain and the teeth that have broken off are in the back. I had wanted to get them

all pulled and get dentures. I can no longer wear my partial. Now there is nothing

I can do but pray my remaing teeth won't fall out.

I see my rheumy in two weeks. He wanted me to start on a new bisphosphonate

either a daily injectable or a yearly infusion. I'm reluctant to take anything.

I have been doing research and I'm leaning on the side of just stopping the med.

What do you think?

Hugs, Robin

 

Posted 3/29/2010 9:09 PM (GMT 0)
It is really fate that you posted this. I got a phone call this morning for a consult after a bone density scan. It seems I have osteopenia. It is always something!!!
Posted 3/29/2010 9:10 PM (GMT 0)
Oh, Robin, I'm so sorry you are having all of these problems.  It's just not fair!

 

I agree that it very well could be the Boniva that is causing more problems for you.  I checked out the medications before my doctor and I sat down, after my osteoporosis diagnosis.  I didn't want to take Boniva, Fosamax and others in that family of drugs because some were having bone loss...especially in the jaw.  It was like the bone was dying.  Obviously, Boniva isn't helping you one bit.

 

My doctor has me on Evista.  It isn't a hormone but acts like one.  I have not had a single problem with this medication and it also helps protect against invasive breast cancer too!  I put a link at the bottom about it for you.   So far, though, my loss is stabalized but he wants it to get better.  I have Crohn's so I don't absorb things like I should and I know that plays into my picture.  He said that if I don't see improvement with the next bone scan, he will want to do infusions.  I only have a moderate loss, too!  So, REALLY talk to your doctor.  What you are going through shouldn't be happening since you have been treating this for several years!

 

http://www.evista.com/pat/pat300_about_evista.jsp

 

I'll be praying that you get the help you need and turn this all around.

 

Sherrine

Posted 3/29/2010 9:21 PM (GMT 0)
Thank You Sherrine! I will be printing out the info you referred me to and will bring it along
my next doctor visit. The name of the infusion my rheumy wants me to try is Reclast.
I think I have decided against the Forteo daily injections for sure. Hoping A good decision
can be made, Thanks again!

Hugs, Robin
Posted 3/29/2010 9:24 PM (GMT 0)
My doctor mentioned Reclast, too.  That might be the ONLY infusion-type medication for osteoporosis.  Good luck!  Let us know how you fare.

 

Sherrine

Posted 4/1/2010 2:56 PM (GMT 0)
Robin, I saw something in my paper the other day I thought might be of interest to you. They have a health section 1 day a week, ppl will ask ??? of a pharmacist and he responds.

This woman has been on Fosamax for about 8 yrs and was NEVER told that it shouldn't be taken that long. She is 62 and works out. She fell last yr and broke her femur. Her friend is 55 and also takes Fosamax. She ended up w/ a broken jaw after a dental procedure and she broke her tibia.

The pharmacist wrote back that 'Drugs like Actonel, Boniva, and Fosamax increase bone density, BUT long-term use may alter the quality of the bone.

At a recent meeting of the American Academy of Orthopaedic Surgeons, researchers presented data suggesting that after four or five yrs of treatment, some bone may lost its structural integrity and become brittle. The FDA is reviewing data to determine whether these drugs contribute to atypical femur fractures.'

I know one dr put my DM on a cancer med for many yrs, it shouldn't be taken for more than 5 yrs. Another dr had to point that out. She is now on a differnt med. You just wonder sometimes how much the drs really know about the meds they prescribe.

God bless.  Alice.

Posted 4/1/2010 4:52 PM (GMT 0)
Thanks Alice for this information. I have been gathering lots of info for my next rheumy
visit. I have decided I will not even consider the Reclast infusion and I'm not taking
my next dose of Boniva either. Reclast is a bisphoshonate..

The consult with the oral surgeon really opened my eyes to dangers of bisphoshonates.
I did read a report of long term use of a bisphoshonate can change bone and lead to
unusual leg breaks.

Alice Thank you for thinking of me when you read that article. I really appreciate it!

I've been keeping your Mom in my prayers.

Hugs, Robin
Posted 4/1/2010 7:06 PM (GMT 0)
I too have osteoporsis but due to all the stomach issues can not take any of those oral meds. After we found out my vit D was low my doc said that could have something to do with the osteoporsis since you have to have D to process calcium right so hopefully getting the D up will help a lot of us.

 

luv and hugs

Marlee

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