Advice please

Just started on new drug - (fingolimod) I’ve been in a lot of pain ( like electric shocks) in my legssince starting on this drug, i’ve also been having strange feelings of being wet from the waist to my feet, Has snyone else started on this drug ?

Hello Liz, I have that without the drug.

My philosophy, after thirty years pf MS is, if you don’t like the drug don’t use it. These are prescribed to us because the may work for some people. The feeling of wetness is very disconcerting.

There are so many crazy symptoms-I’m almost used to it.

Best wishes, Steve

Hi Liz

I am not on that medication so can’t comment, other to say that I get electric shock feelings in my legs which make them jerk, and they can be really painful, so you have my empathy.

Could be just coincidence but maybe worth having a word with either neuro, ms nurse or GP, hopefully they can clarify.

Wishing you all the best.

Pam x

Hi Liz, There is no point putting up with side effects (if that’s what it is) when there are alternatives available. As Pam says, talk to your GP, MS Nurse or neurologist about the options. It doesn’t sound as if fingolimod is suitable for you. Regards, John

Hi Liz

You should definitely speak to your MS nurse or neuro. However, this section is for primary progressive MS specifically, so we don’t get any disease modifying drugs, like fingolimod. If you post in the Everyday Living section then I’m sure you’d get more people with experience of this drug commenting.

The symptoms you’re experiencing don’t sound unusual for MS type symptoms tho. Hope your nurse an help you better tho.

Sonia x

Hi Liz,

I was on this drug Fingolimod on a trial for PPMS in Australia and they stopped the trial in it’s third year it didn’t pass for PPMS, now this drug Fingolimod - Gilenya i think it is mainly used for RRMS please speak to your Doctor about this i could be wrong.

all the best stevo450

Hi there Liz. Considering MS has been around for a long time & how much funding has been spent on drugs. I chose the none medicated route after my experience of being a guinea pig. I’ve been trialing so many natural remidies, exercising & eating a balanced diet. It’s been far better for my health. After being offered Fingolimod with my experience of Baclofen, Anti-Depressents & the pot luck stuff. Life has been far better. Trying a different approach to life seems to work wonders. Along with avoiding the stress heads & folks stuck in their routine. All the best, Terry.