My son, Bobby, is 9 years old and has been on 35mg/weekly of Fosamax for about 2 years. Every 6 months we went back for a DEXA scan and found that while Bobby's lumbar score stayed pretty okay, his femor score has continued to decline - his last z score was -5.6. Today we had another DEXA as our neurologist is recommending to raise his dose to 70mg/weekly. Upon completing the DEXA today and talking with the Endocrinologist - they are recommending that Bobby have a Pamidronate Infusion starting in the next 2 weeks then every 4 months after that for a year. We would have another DEXA in 6 months to see how it's going - has anyone had any experience with this drug and the infusion? I appreciate any insight. Thanks.

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Hi,
My son tried the IV Pamidronate once, it gave him a high fever (motrine/IB profen) would not bring the fever down, and with the high fever came an elevated heart rate, further he did not feel well for a couple of days. If I remember correctly he missed at least 2 days of school. From what our doc. told us that type of reaction is pretty common, sometimes goes away after several infustions... We decided after that to stick to other types of osteoporosis medications and supplement(s).
Hope this helps,
Katherine
Thanks Katherine I appreciate your information - they did tell us that fever was typical - was your son at the hospital for his infusion?
Yes, he was infused at the University of Washington Medical Center. Fever onset was not until after we got home.
Debbie Bogar said:
Thanks Katherine I appreciate your information - they did tell us that fever was typical - was your son at the hospital for his infusion?
Sorry for all the questions - did they give the infusion to your son over a period of two days and have him stay in the hospital the entire time. I am having a heck of a time finding any documentation out there for boys with DMD that have had this - so I really appreciate your input.
Hi
I think this is a fairly new procedure for osteoporsis. My sister-in-law is trying to get the insurance to cover it for her post cancer treatment. I don't think there is very much research on treating this disease in dmd. Each clinic is trying different things with no consensus at this time. My son was on Actonal for 5 years and though the numbers improved, he was still 3-4 standard deviations below normal. If you do find something, please post it here because I am very interested in bone health in dmd.

Debbie Bogar said:
Sorry for all the questions - did they give the infusion to your son over a period of two days and have him stay in the hospital the entire time. I am having a heck of a time finding any documentation out there for boys with DMD that have had this - so I really appreciate your input.
My sons at one time tried infusions of Zometa for their bone density, as the fosamax did not improve their bone density either, we did three infusions, I think they were 3 or 4 months apart, it took about an hour for the infusion, they did the first one at the doctors office to make sure they did not have any bad reactions, the next 2 times they send Apria out, they have RNs that do infusions, my sons had a mild fever and did not feel well for a few days, my boys were older, can't remember their ages since it was awhile ago, and they were wheelchair bound already and it was getting difficult to do the dexa scans, moving them and so on, my sons decided it was too much trouble, so we stopped that treatment.
Thanks to you all for the information. We are going to go ahead with the infusion on August 10-11 - we are doing it at the hospital with an overnight stay. 4 months after this infusion we do this again and then at the 6 month mark we have another DEXA to see if there is any improvement. I will post how Bobby does on with the first infusion and definitely the results of the Dexa in 6 months. Hopefully this improves his numbers -
Hi Debbie,
Just curious to find out how things went with the infusion. Hopefully without a hitch :-)
Katherine

Debbie Bogar said:
Thanks to you all for the information. We are going to go ahead with the infusion on August 10-11 - we are doing it at the hospital with an overnight stay. 4 months after this infusion we do this again and then at the 6 month mark we have another DEXA to see if there is any improvement. I will post how Bobby does on with the first infusion and definitely the results of the Dexa in 6 months. Hopefully this improves his numbers -
Thanks for asking...Actually - everything went very well with the infusion. Bobby had no side effects from it and it was reassuring to be at the hospital for the infusion. Each infusion took 4 hours but Bobby could go to the game room and do whatever as long as he was feeling fine. The next infusion should be in December and we will have home healthcare come to our house to administer.

The plan is to do the second infusion then have another Dexa in Feb or Mar to see if there was any improvement.

We aren't sure if we are continuing with it though as our Neuro we see is in discussion with our Endocrinologist in regards to the success Omaha is seeing with Pamidronate as apparently studies over the summer are suggesting that Fosamax and other bone density improving drugs are actually causing brittle bones in boys with DMD. It's so hard to know what path to take with DMD - nothing is ever clear cut. I am anxiously awaiting the results of that discussion so we can decide how to proceed.

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