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rainbowmom (yeages)
Forum Leader
Username: Rainbowmom

Post Number: 245
Registered: 11-2009
Posted on Monday, November 15, 2010 - 04:50 pm:   Edit Post Delete Post Print Post

Dear All:

Here is a recent article in the NYT regarding Fosamax etc. The interesting part for me is that the FDA will now require the labels to state the optimum long-term dosage is unknown at this stage.

http://www.nytimes.com/2010/11/11/health/11bone.html?_r=1

As we are all most likely on some form of Fosamazx, Boniva etc., I asked my transplant center today what I should be doing. Of course, the wonder/hell drug prednisone strips the calcium from our bones rendering us sensitive to fractures, osteoporosis etc. That said, what I had said to my clinic this morning was that given that I am on prednisone for life, I would have to be on Boniva for life. So, shouldn't I really only be taking the drug when it became necessary for me to take it, particularly as the optimal long-term dosage is unknown? What we agreed is that I would have my annual bone density scan, and we would compare the results, and if it is stable, I wouldn't take it. If it is showing a decline, then we would reassess.

Welcome suggestions, thoughts, etc. on this topic.

Love, Yeages
rainbowmom
double lung tx january 15, 2010
inova fairfax
Rita
Forum Leader
Username: Rita

Post Number: 454
Registered: 06-2003
Posted on Wednesday, November 17, 2010 - 06:24 pm:   Edit Post Delete Post Print Post

I do not know the answer or have a suggestion. I eat lots of veggies that have calcium in them and yogart (greek), low salt cheeses and try to drink milk a few times a week.
I like to know what the doctors tell you when your test come back. Thanks.
Rita
Kidney Transplant 9/95
New York Hospital, NY
Dr. Wang

Rita's Page on Transplant Friends- see her photos
Karen R.
Forum Leader
Username: Relivkaren

Post Number: 5034
Registered: 07-2007
Posted on Friday, November 19, 2010 - 11:18 pm:   Edit Post Delete Post Print Post

Yeages:

I just saw my bone doc today. I had my yearly dexa scan too. I was considered in full blown Osteoporosis pre transplant and put on Fosamax. Last year, there was significant improvement. Today I found out that I was stable in my spine and my hips and knees had improvement. I am now considered to have Osteopenia.

Fosamax has helped me tremendously, but I did read the study about taking it long term. I asked my doc about that. She said that the problem that they were seeing is that many docs were putting patients on Fosamax like meds prematurely and leaving them on them. That is were the problem lies not with the patients that are at risk for fracture due to Osteoporosis. She felt that because of my long term steriod use and the fact that I had already lost significant bone mass - I was a candidate for long term bone building meds.

So...what I gathered is that you should only be on these meds if you have a risk of fracture due to diagnosed Osteopenia or Osteoporosis. You should not be on them as preventative if you do not have bone loss.

I like what that your docs are taking a "wait and see" approach. I would not take Fosamax if I had not already had full blown Osteoporosis. I have done a lot nutritionally too in hopes of helping my bones. I take calcium, vitamin D, vitamin K2, fish oil, and I do weight bearing exercise. I think that has helped a lot too.

Oh! The most exciting thing that I found out today is that I have grown 1/2 inches! Yes! I am officially 4' 9 1/2" tall!! Wahoo!! Most of that is because I am able to stand tall now. Pre transplant I was always hunched over. It has taken a year to get my body to stand tall. Hey! I will take any inches I can get!! :-)

God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Double lung transplant on Dec. 1st, 2009
Cleveland Clinic

Ohio, USA

Be kinder than necessary because everyone you meet is fighting some kind of battle.
rainbowmom (yeages)
Forum Leader
Username: Rainbowmom

Post Number: 253
Registered: 11-2009
Posted on Wednesday, November 24, 2010 - 04:21 pm:   Edit Post Delete Post Print Post

Hi Karen. Firstly, my taller friend! How cool is that?!!!! Secondly, thank you for reaffirming the decision -- I think that's exactly right in the sense that you should only be taking Fosamax or Boniva etc if you have a condition that requires it, not as a preventive measure.

Your first anniversary is coming up ... :-) I remember the day so clearly too. Funny what a difference a year will make. God Bless you and keep you safe, my dear friend.

Have a wonderful, wonderful Thanksgiving!

Love, Yeages
rainbowmom
double lung tx january 15, 2010
inova fairfax
papillonbleu
Forum Leader
Username: Papillonbleu

Post Number: 1783
Registered: 10-2007
Posted on Wednesday, December 01, 2010 - 02:08 pm:   Edit Post Delete Post Print Post

I also agree with your opinion about this matter as far as not taking the medication until there is a problem it can treat as in regards to this situation. I was on a generic of Fosamax, but as I have trouble with reflux and possible absorption problems, I am now doing the once yearly infusion of Reclast. I have had bone scans showing at first osteopenia and the latest showing some osteoporosis. I am trying to keep an eye on my vitamin D level, and as it was low, I am taking a prescribed supplement of 50,000IU vitamin D once a month along with daily supplementation of calcium and vitamin D. Does anyone know of a good site that would show exercises oriented towards those with osteoporosis? I am trying to do the best I can, but my latest bone scan seemed to show a decrease in bone density and lower scores overall compared to one two years ago. Best of wishes to all.
Bobbiejo
Forum Leader-Multivisceral
dx: GERD 1995, gastroparesis 2002, pseudo-obstruction of the bowel 2004
multivisceral transplant, 6 organs, 10/06/05
University of Miami/Jackson Memorial Hospital

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