I have some questions for David/anyone else.

[Erig B]

Hello. I am a 24-year-old man with DMD and I have some questions for anyone that knows about this sort of thing.

1) Are there any kinds of drugs/supplements I could take that could help me? I've heard Coreg can help make the heart work better. Are there any others that could potentially aid someone with advanced DMD like me?

2) I've been reading up on treatment trials and it seems quite a few treatments are coming down the pipe in the next 5-10 (possibly 15) years. How many of these can be used on people with DMD, particularly patients 20-years-old and onward? Which ones should I be following as far as research?

Thanks for your time. This forum has been a great educational tool for me.

[David Feder]

ErigI: thanks for your message. My son will complete 24 years of age in March. At his age are some basic care: respiratory, heart, nutrition, bone, etc.. I suggest that you at least every 6 months a respiratory assessment, in case of failure would require the use of BIPAP. Cardiac Care: EKG and echo every 6 months and even without dysfunction is necessary cardioprotection with carvedilol (coreg) and losartan and / or ACE inhibitors (enalapril, captopril, etc). Bone Care: dexa scan every year.
Nutritional care to avoid excessive weight loss or obesity.
Supplements: There is no evidence that the supplements can help at any age, but their use should certainly improve their clinical condition. L-arginine, glutamine, creatine, HMG, anti-oxidants such as CoQ10, curcumin and others should also help. We can't test each drug or supllement alone. Unfortunately we have no time to lose and if each of the supplements do any effect you have a better quality of life. My son use several supplements. Where do you live? If you want to send me an e-mail ([e-mail]) will be a pleasure to give you more informations.
A hug,
David

[varghakata]

Hi David
protandim, juven, steroids, losartan, coq10, nicotinic acid, vitamin E, D, alendronate, steroids, carvedilol, creatine, oxotamide, etc. etc.
My Son 25 kg.
from this supplement ,how many mg must He take ?
I read about albuterol drug is safe option.
whats Your opinion about albuterol ?

[David Feder]

I reply in parts:
Cardioprotection: losartan or ACE inhibitors and carvedilol under medical supervision, in case of cardiac dysfunction is associated with spironolactone and/or digoxin.
Osteoporosis: Alendronate - 70mg a week, fasting for 60 minutes, 30 minutes remain without bed
Treatment of osteoporosis and cardiprotection is a medical decision.
Medical literature recommends the early cardioprotection but many doctors ignore this recommendation.

[David Feder]

Calcium to prevent osteoporosis and children with steroids;
children - 4 through 8 years: 800 mg
children - 8 through 19 years: 1300 mg
adults- 1000 1200 mg

Pentoxyfilline - my son use 400mg/ day; dosis for children don't determined

Juven - my son use 1 pack each day

[David Feder]

Other supplements:
Omega 3 fish oil 1000mg
coq 10 - 400mg
lipoic acid - 600mg
taurine 50mg
carnitina - 100mg
vitamin b2 - 50mg
vitamin b6 - 100mg
vitamin c - 100mg
selenio - 100mcg
vitamin d - 1000 u
carnitine - 100mg
and others HMG - 1pill