Drug for PPMS

I was Diagnosed with PPMS in May of 1996. I have just come across the MS Forum and most if not all the postings were of Interest.The reason I searched follows a call from a relative telling me about the Jeremy Vine Radio show 5th Feb about a ‘new Drug’ for PPMS.It was not named so i googled ‘new drug for ppms’ and it came up as Amiloride. Could someone update me with it’s status re NICE appoval and how it works on PPMS. I currently take between 30 and 50 mg of Baclofen a day for poor mobility in my Left Leg - I find it a bit of hit and miss. My mobility is always the first item on the Agenda at my 6 monthly reviews with the MS Nurse.

In one of the posts (Lozzie) the Drug Idn was mentioned - what does this do for PPMS.

Many thanks to all that might reply to my very first Post.


Hi Tom and welcome!

I also have PPMS. Go to the PPMS board and read threads ‘Drug trials’ and ‘Fampya’ (also many other posts refer to various drugs and frustration at not being able to get them on NHS!).

For info on LDN, go to the ‘LND Research Trust’ website. Also put ‘LDN’ in search on this site as there have been many posts about it.

Nice to see you on here,

Pat x

Here is some recent information concerning amiloride.


I expect you know that ldn is an unapproved treatment for MS, but well worth taking a look at the site Pat suggests, in my opinion.

Many thanks for replies. Tom