Our son Krishna was diagnosed last Oct and he turned 7 in December 2014. He has been on a weekend dose of Prednisone for a little over 6 months now. We started at 50mg per day and have gone up to 100mg per day which our doctor suggests is the stable dose for weekend regimen. We have had no weight gain issues but do see behavior issues. Overall I donot see much difference in his muscle strength from starting steroids. He is ambulaotry and does stairs as well. I'm looking for some inputs from parents who have continued to be on weekend dose over an extended period of time. Have you seen similar results (ambulation, side effects) comparable to daily dose. Thank you so much for your response. Any recommendations of daily versus weekend
We would really appreciate hearing from some parents who are using weekend regimen. We have been on it and just need a vote of confidence that its the right choice for the long run. Thanks so much for your time and support. Being newly diagnosed, we are having a lot of anxiety and apprehension
Soon after our son, Weston, was diagnosed with DMD at almost 5 years old, he fell and busted out 3 of his front teeth. The MD recommended going ahead and starting steroids due to this fall. We started him on the weekend high dose Prednisone. The MD said this was the best place in his opinion to start. We could always switch to daily dosing, but it was harder to switch to weekend dosing after doing daily. He did great on this for about 3 years. No major behavior issues nor massive eating issues. Toward the end of the 3rd year, we noticed that the weekend dose was not carrying him all week. He would start slowing down by about Thursday each week, even though his dose had been steadily increased as he grew. He was to the point where the weekend dose was almost too high to be safe and no longer working as well for him. We then switched him to daily Prednisone. This quickly escalated his appetite. He gained so much weight that he quit walking completely by 9 years old. We then talked to our MD and switched Weston to daily Deflazacort. Yes, it is somewhat of a pain to have to order it from the UK, wait for it to arrive, and pay for it out of pocket, but we feel it was the best decision. Ultimately, we listened to our MD's advice, made what we felt was the best decision for Weston, switched things up when needed, and continue on with our daily struggles of this disease. You have to meet this disease on a day to day basis and not let the anxiety and apprehension rob you and your family of having a life.
Thank you so much Lisa for sharing your experience. We are trying to take each day at a time and make decisions that we hope are good for now and also the future. Its a tough call and all of us here, I'm sure go thru this everyday. We don't necessarily have any regrets or concerns from being on weekend so far (although its just been 6 months) but just that there just not enough data or long enough study available to prove that long term weekend use can give similar results as daily dose is making us uncomfortable. Krishna is not tolerating 100 mg of prednisone that he is on well for the past two weeks and thus switching to daily is our next best choice. We are going to start deflazacort mainly due to 2 reasons,
a. Everything we read and hear so far indicates there are less weight gain issues with Deflazacort and also some indications that stunting is lesser too. Although we are cautious about cataracts
b. There is an open label study happening at our MD clinic of Deflazacort and those who participate will be able to get Deflazacort paid thru the study until FDA approves / rejects the drug
We would love to hear more opinions on Deflazacort use from parents who are on it long term.
Thanks everyone for your time and inputs