My son started Prednisone 2 months back and has gained 2 kgs since then. I know that side efects with steroids vary from person to perrson but is this weight gain in the normal range or should we be looking for switching the steroid.
We are in Netherlands & here Doctors do not prescribe Deflazacort. Therefore, Pedinisone is the only option for us .......but if his weight gain is really too much then we definitely need to discuss this with his Neurologist.
One more thing is that even though he is on medication since last 2 months , doctor has not prescribed any supplements for him yet. My question was that is it not that supplements are started as soon as we start the steroids.
Thanks
Tulika

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The doctors, in many cases, won't suggest supplements. That's where this site is great and so is the internet. I like to use this site http://www.truestarhealth.com/Notes/healthnotes.asp to tell me what the medications deplete and increase in the body of. Salt intake is a big one too. I am in Canada where we can get Deflazacort without question, but from what I've read, many can have it ordered in and pick it up at hospital pharmacies. You just have to an advocate and not take no for an answer. Good luck!

Naomi
Hi Tulika,
Our son gained 1.5 lbs after being on deflasacort for 18 months. Dr Wong was concerned with even just this minimal weight gain because he had not grown during this time. did your son have a growth spurt? If not then that does seem to be a lot of weight for 2 months. can you get the deflasacort from masters marketing. good luck.
We use the growth chart to figure out how much gain is ok. We need to try and keep it at the same percentile that was there prior to the start of the steroid.

Few tips for controlling weight

1) Givign steroids in the morning
2) Controlling sugar intake
3) Using low sodium salt
4) Low carbs
5) Heavy breakfast, lunch and lite dinner
6) early dinner

-bain
Our son gained 8.8 pounds in 9 months on prednisone. We switched him over to deflazacort only for this reason. It now cost us $288.00 every 3 months vs. $33.00 for prednisone. He has lost a pound in 5 months since switching him over. The cost is worth it to us since the weight gain adds to his muscle weakness problem. We didn't notice any other changes ( i.e., behavioral issues, attention issues,weakness, fatigue, etc) from using deflazacort. It was a simple process too. One day, he was on prednisone and the next day, we gave him deflazacort. Dr. Leshner figured out the dose we needed to give to our son. The only down side to deflazacort is the cost and playing the waiting game to get it in the mail. I kept his prednisone as a back up in the event his deflazacort gets held up in customs or if we are just waiting on it.
Good luck. I can understand your concerns. Unfortunately, my son is one of those boys who gains the weight from a steroid. He is not underweight by any means.
We're here in the US and we order it from the UK. All you need is a prescrption for deflazacort and fax it to Masters Marketing. I deal with Julie on the phone. You have to give them your credit card information. It took about a week or so to get it to us from the UK. They only send you a 3 month supply. Dr. Leshner wrote us a prescription for 6 months so when the 3 months is up, I call Julie and she sends us the remaining 3 month supply.
Tina

Does the insurance pay for deflazacort?

Thanks,
-bain
Kelvin gained between 7-9 pounds this last year, but, he did grow 2 inches, so he is still fine on weight (his normal doctor says). I am betting that Dr. Wong will think it is too much though, we'll be there in January. His weight gain, most of it, happened prior to steroids, but after starting supplements. I think the Creatine actually made him gain weight and in muscle (no matter what doctors would tell me), as immediately after starting the creatine the beginning of the year, he gained weight and his muscles bulged (his thigh muscles and arm muscles grew, quickly). He had only gained 3 pounds in 3 years, previous to this year. Kelvin is 6 and weighs around 46 pounds or so. It doesn't seem bad to me and he isn't fat at all, just solid. He did want to eat a lot when first starting Deflazacort in June, but that didn't continue, he eats very normal. He does eat sweets, but he rather have fruit, we just give him a little at a time and tell him what he can have. He is ok with that. He mostly wants to chew sugarfree bubblegum (all the time!). Michelle
bain

No, our insurance does not cover the cost of deflazacort since it is not FDA approved. We pay $288.00 every 3 months for deflazacort. There is a thread on here somewhere already with the ordering info on it. Just let me know if you want Julie's phone # and fax #. I'll dig it up for you after Halloween.
Tina

Thanks, My son is on Defalzacort and we buy from MasterMarketing . When you mentioned the cost, I was wondering if there is a way to get it covered under the regular insurance in US. Thaks again. -bain

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