MS drug for HSP?

Posted - November 2013 in Your Say

HSPer trys Fampradine (Fampyra)

 

I am Grant Powell from Melbourne. I am trying a new drug Fampyra, which is for people who have MS, to see if it will help my Familial Spastic Paraplegia that I have had for 25 years.

My doctor seems to think I should give a try and so do I. From the news I have read about what it is doing to assist MS people it sounds very interesting.

There is a large cost at the moment – $650 for 56 tablets and you take 2 per day. There is no PBS on the drug so I am going to try it for 28 days and see how it goes. I have only taken it for 9 days so far. Nothing at the moment, but I will let you know how things go.

Cheers

Grant

Comments on this story

  1. Wil posted at 11:12 am on 9 December 2013Reply

    I tried Fampyra about 12 months ago as part of a MS research program at the Gold Coast Hospital. I was fortunate enough to obtain a free sample for a month but I had no response at all.

    Good luck and I hope you have some success with it.

    Wil

  2. Grant posted at 11:38 am on 10 December 2013Reply

    Grant Powell – I have tried the Fampyra for 28 days and there was no change in my legs. I had Urinary tract infection and Constipation which was a bit uncomfortable. My doctor said there is no reason to take anymore – they, the Fampyra people, suggest that you take 2 doses of the tablets, but at the price of $650 that it cost me, I wasn’t going to give it a try. It would have been great for a bit of help in the cost of the tablets. Wil, I’m glad to hear that you have tried the Fampyra.

    Cheers Grant

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