Steroids
Dr John McConville was asked regarding this at a Becker Event in Belfast .I recorded what he said on an MP3 player so the notes below have been produced by listening again and writing down what was said . I have not written down everything he said this is the main important bit.
NB The comments in blue are by me making comments for you –I do not claim to have any medical knowledge.
Q What do you know about the use of steroids with Becker ?
There are some drug treatments which have been increasingly popular for use with Duchenne but really haven’t been tried in any numbers with Becker. A very different equation with Becker, steroids have lots of side effects and like any drug there are risks as well as the benefit side.
Q .What are they ?
I’ve written down some, the risks are short term
- Diabetes
- Catteracts
- Brittle Bones - Osteoarthritis
- Weight problems
- Sometimes changes in moods
- Sometimes ‘ ‘ ‘ Sleep patterns
- Bruising
- Changing Fat distribution for instance fat faces
- Acne
Side Effects Long Term
- Shortens the life span –not said at this point in his talk but he did say it
Benefits
The potential benefits in Duchenne maybe outweigh the Problems
- makes the muscles stronger for longer
Very different equation with the duchennes , much more effective as they loose their strength much more effectively and stop walking early in life and their lives are short so some of the short term and the long term problems we refer to are not so much a problem . Its not so much of an issue as it is with Becker.
There’s not enough medical evidence ( these are examples of thing they don’t know but would be good to know I didn’t pick it up properly sorry )
For instance in all this work if it helps 50 people live and you know they are going to be better than the 50 you don’t help ?
Or a 50% chance you are going to be walking for an extra 10 years ?
Or If not we want to hear about it we don’t have it
There haven’t been enough people tried with Becker’s with steroids and the benefits of Duchenne given their reasonably high numbers are not hugh and yet there is enough to warrant effort.
My conclusions
Risks
- Shortens the life span-
- Diabetes
- Catteracts
- Brittle Bones - Osteoarthritis
- Weight problems
- Sometimes changes in moods
- Sometimes ‘ ‘ ‘ Sleep patterns
- Bruising
- Changing Fat distribution for instance fat faces
- Acne
This is not an issue if your life is shortened anyway as with Duchenne as you may get a better quality of life –Stronger for longer but with Becker you can live a normal life span you may regret taking the risks in the long term. One other thing is everyone I know who takes steroids has a fat face I mean rounded for instance my brother in the USA who has to take steroids,
Tim
Steroids –Can they be used to treat Becker MD ?
Dr John McConville was asked regarding this at the recent Becker Event in Belfast .I recorded what he said on an MP3 player so the notes below have been produced by listening again and writing down what was said . I have not written down everything he said this is the main important bit.
NB The comments in blue are by me making comments for you –I do not claim to have any medical knowledge.
Q What do you know about the use of steroids with Becker ?
There are some drug treatments which have been increasingly popular for use with Duchenne but really haven’t been tried in any numbers with Becker. A very different equation with Becker, steroids have lots of side effects and like any drug there are risks as well as the benefit side.
Q .What are they ?
I’ve written down some, the risks are short term
· Diabetes
· Catteracts
· Brittle Bones - Osteoarthritis
· Weight problems
· Sometimes changes in moods
· Sometimes ‘ ‘ ‘ Sleep patterns
· Bruising
· Changing Fat distribution for instance fat faces
· Acne
·
Side Effects Long Term
· Shortens the life span –not said at this point in his talk but he did say it
Benefits
The potential benefits in Duchenne maybe outweigh the Problems
· makes the muscles stronger for longer
Very different equation with the duchennes , much more effective as they loose their strength much more effectively and stop walking early in life and their lives are short so some of the short term and the long term problems we refer to are not so much a problem . Its not so much of an issue as it is with Becker.
There’s not enough medical evidence ( these are examples of thing they don’t know but would be good to know I didn’t pick it up properly sorry )
For instance in all this work if it helps 50 people live and you know they are going to be better than the 50 you don’t help ?
Or a 50% chance you are going to be walking for an extra 10 years ?
Or If not we want to hear about it we don’t have it
There haven’t been enough people tried with Becker’s with steroids and the benefits of Duchenne given their reasonably high numbers are not hugh and yet there is enough to warrant effort.
My conclusions
Risks
· Shortens the life span-
· Diabetes
· Catteracts
· Brittle Bones - Osteoarthritis
· Weight problems
· Sometimes changes in moods
· Sometimes ‘ ‘ ‘ Sleep patterns
· Bruising
· Changing Fat distribution for instance fat faces
· Acne
This is not an issue if your life is shortened anyway as with Duchenne as you may get a better quality of life –Stronger for longer but with Becker you can live a normal life span you may regret taking the risks in the long term. One other thing is everyone I know who takes steroids has a fat face I mean rounded for instance my brother in the USA who has to take steroids,
Tim