Replies to This Discussion

Permalink Reply by anne on January 22, 2009 at 7:38am

not sure...
when we were first prescribed steroids it was by the consultant. he wrote to our gp to keep him informed of doseage etc. gp gives us repeat prescriptions. we don't have to see gp for this, just a note.
consultant 'adjusts' doseage accordingly... and writes to let gp know

i'm not sure if your gp could 'start you off' on steroids... but it might be worth asking

i can't remember... was james already on steriods? ... because if he was then i would have thought gp could definately help

i'm not too helpful, but wishing you luck
anne x

Permalink Reply by Sharyn Thompson on January 22, 2009 at 7:46am

He has been on steroids since he was first diagnosed, at 2 years of age. And apart from the first 2 months (when he was on prednisone) he has been on deflazacort. When I saw the GP he told me that Deflazacort is not available in the UK but that there were so many other steroids he could take that do the same trick (such an idiot!!) so I am not feeling too positive about him giving me a prescription.

So James has a medical history of taking steroids, but that was through Australia. I am now wondering if I could get his Aussie doctors to write me a letter to give to his GP, since he won't be seeing anyone at GOSH until June!

Permalink Reply by *annette* on January 22, 2009 at 2:37pm

I reckon you probably can, you need to speak to Pauline as her Josh is on deflazacort. Joe's on prednisolone but our GP supplies the prescriptions all the time. Sometimes they even push the boat out and check, height, weight, blood pressure and every so often urine. ;-)

x

Permalink Reply by Johanna on January 22, 2009 at 5:45pm

If James is currently on steroids there shouldn't be an issue, to be perfectly honest Sharyn from your posts regarding your GP I would move to another one in your area. It may be worth chatting to neighbours, other mums at school etc... to see who they are under, it sounds like yours is an ass (polite name!!!)
If you have no luck I would contact Ruth Barratt the neuromuscular clinical nurse specialist at GOSH to ask for her advice, if you want let me know and I will pass you her direct number.
Good luck
xx

Permalink Reply by anne on January 23, 2009 at 9:19am

i was under the impression that deflazacort was available in the uk... what concerns me sharyn is that once your son has started a course of steroids, that they shouldn't just be stopped.
fred is 10 and we have be reducing his steroids gradually, under the instructions of prof muntoni
i think speaking to ruth barratt is a good idea... so is changing that gp

good luck
anne x

Permalink Reply by Lorraine Davies on January 23, 2009 at 2:37pm

Alex takes deflazacort daily, it was prescribed by his consultant but we now get regular repeat prescriptions from our GP. hope this helps. Lorraine x

Permalink Reply by Lynne Taylor on January 24, 2009 at 3:49pm

Hi Sharon
I have checked with my friend who is a pharmacist and deflazacort can be prescribed by your GP as it used to treat other conditions as well as Duchenne . However i would think that it would be the neurologist who would advise it to be prescribed. All you would need to do is ask the neurologist to write to your GP to prescribe the deflazacort.
Hope this helps and hope you find a more knowledgable GP
Lynne

Sharyn Thompson said:

He has been on steroids since he was first diagnosed, at 2 years of age. And apart from the first 2 months (when he was on prednisone) he has been on deflazacort. When I saw the GP he told me that Deflazacort is not available in the UK but that there were so many other steroids he could take that do the same trick (such an idiot!!) so I am not feeling too positive about him giving me a prescription.

So James has a medical history of taking steroids, but that was through Australia. I am now wondering if I could get his Aussie doctors to write me a letter to give to his GP, since he won't be seeing anyone at GOSH until June!

Permalink Reply by Sharyn Thompson on January 25, 2009 at 2:41am

Thanks everyone for your advice. James hasn't been to GOSH yet and doesn't have an appointment till June so no neurologist as yet. I might see if the (idiot) GP will give us a prescription based on his Australian doctors notes.

Permalink Reply by KellyR on January 26, 2009 at 7:32am

Aidan's first prescription for prednisolone was an Australian one that I filled for the first time in England. I just gave the aussie prescription to our new English GP and he just altered it slightly - I think a slight difference in name- to the UK equivalent. Do you have any copies of the last one to show him? I agree with Jo, maybe also look at switching GPs, he sounds like he's going to be nothing but a drain!