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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: |
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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 |
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Rita
Forum Leader Username: Rita
Post Number: 454 Registered: 06-2003
| Posted on Wednesday, November 17, 2010 - 06:24 pm: |
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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.
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Karen R.
Forum Leader Username: Relivkaren
Post Number: 5034 Registered: 07-2007
| Posted on Friday, November 19, 2010 - 11:18 pm: |
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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. |
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rainbowmom (yeages)
Forum Leader Username: Rainbowmom
Post Number: 253 Registered: 11-2009
| Posted on Wednesday, November 24, 2010 - 04:21 pm: |
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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 |
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papillonbleu
Forum Leader Username: Papillonbleu
Post Number: 1783 Registered: 10-2007
| Posted on Wednesday, December 01, 2010 - 02:08 pm: |
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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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