Hello,

My son started prednisolone last two months. 15mg/day for 2 weeks (he is 26kgs --> ~ 0.58mg/kg/day). Then reduce to 10mg/day (~0.38mg/kg/day). After two months, he got CPK test again. It is ~ 24,000U/L (two months ago was ~ 12,000U/L). So, Dr proposes to increase back to 15mg/day.

Anyone can give me some advise on :

+ Should steroid link with CPK level or not ?

+ Should I increase dose or not ?

Very much thanks.

Trinh

 

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CPK IS NOT IMPORTANT IN THIS CASE BECAUSE IT IS UP AND DOWN

Deflazacort is much better than Prednisone

 

Hi, Not sure what age your son is, but our son started steroids in January aged 5 and a half. He started on 16mg as the standards of care published in the Lancet stated 0.75mg per KG. His weight has gone up slightly, but the docs are happy to stay on the 16mg dose per day. We will try and stick to the recommendation in the standards of care, depending on side effects etc. The standards of care document is available on the Action Duchenne Site....

As for the CPK, my understanding is that steroids have no effect on CPK levels...but I may be wrong.... our sons CPK result when he was 4 years old was 32,000,.....and have never got it measured again......Hope this is of some help?


Dear Damien,

Much thanks. My son is 6 and a half. Yes, current dose is quite low.

So, we will consider to increase to standard level.

By the way, how does yr son's doctor monitor his progress ? Regular exam./check-up ?

As you said yr son did not take CPK measure again. Doctors in my city just ask CPK measure to monitor progress (!), it seems not appropriate .

Wish you and family a nice week-end.

Trinh 


damien lynch said:

 

Hi, Not sure what age your son is, but our son started steroids in January aged 5 and a half. He started on 16mg as the standards of care published in the Lancet stated 0.75mg per KG. His weight has gone up slightly, but the docs are happy to stay on the 16mg dose per day. We will try and stick to the recommendation in the standards of care, depending on side effects etc. The standards of care document is available on the Action Duchenne Site....

As for the CPK, my understanding is that steroids have no effect on CPK levels...but I may be wrong.... our sons CPK result when he was 4 years old was 32,000,.....and have never got it measured again......Hope this is of some help?

Hi Moein,

Much thanks for yr reply.

Yes, I heard many parents said so. But Deflazacort is not available in Viet Nam. Anyway to buy from other country ?

Trinh

Moein said:

Deflazacort is much better than Prednisone

Hi,it can be purchased from Europe,Japan,Korea I think
I don't think I have ever heard anyone, even in the medical community say that deflazacort is better than prednisone. They both are equally effective. There are supposed to be a few less side effects with deflazacort, particularly weight gain.  
Moein said:

Deflazacort is much better than Prednisone

My son has been on defalzacort and on prednison, i believe defalz is a little better for my son, when he was on prednison he was on 16mg everday and in less than three months my son gained almost 30 pounds so the doctors and us decided to try deflaz and hes on 15mg everyother day and im so glad to say that all though he hasnt lost the 30 pounds he has not gained any more  so again my thing with the meds is that they both work different and every case is very different.

Dear Jessica,

Yes, I heard so. But in my country, only prenisolone is available. I am asking my relative to buy in Canada ; but it's very difficult ; maybe impossible.

Trinh

Dear Dolf,

So sad whenever I hear of more Duchenne boy.

I have just joined the community no so long time ago. I have not much experience since my son was just dianosed Duchenne in Feb. '11. I believe moms and dads here can give you best advise.

Meantime, you can check the below link. It's very useful.

http://issuu.com/parentprojectmd/docs/connect2010_wong/1

Take care.

Trinh

 



Dolf Lombard said:

Hi All

 

Our youngest boy, Petrus, who is 5 years old tomorrow,  was diagnosed with DMD three weeks ago. The doctor said the first step is to put him on Steriods.

 

I read a lot about this and also read what you all said and have a few questions. Please forgive me if it was answered elsewhere and I missed it:

1. Does he have to go on it this young? Can't he wait until he is older? What is the latest he can start and still benefit?

2. What are the main benefits for going on steroids? I have read studies but want to hear from parents who are experiencing it daily.

3. What are the main side affects? Does it weigh heavy it terms of quality of life? I also understand it affects children's immunity. We live in South Africa which is a developing country and we are exposed to more sicknesses.

4. Will being on steroids not disqualify a child for later treatment or are we buying time for when better treatment becomes available. ei. exon skipping

 

Thanks

Dolf 

Many from the US and elsewhere get the deflazacort from Masters Marketing UK from what I've read here and on Facebook.  We live in Canada so we are fortunate enough, as you know.

Trinh Nguyen said:

Dear Jessica,

Yes, I heard so. But in my country, only prenisolone is available. I am asking my relative to buy in Canada ; but it's very difficult ; maybe impossible.

Trinh

My son is 4 years old and on steroids (prednisolone) since February - 10 days on and 11 days off. He gets 0.75 mg/kg/day. His CPK level was 2,600 at the time for diagnosis, it hasn't been measured since. Our neurologist has never mentioned the CPK level being related to steroids.

We haven't tried Deflazacort, but he is doing very well on prednisolone - the only side effect so far is that his cheeks are a bit round. He has improved a lot physically, now he can jump, run and climb hills. He goes to regular check-ups every other month to check blood pressure, height, weight etc.

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