Finally fampridine is recommended to be available as a routine commissioning treatment option for adults with MS and associated walking impairment (as defined by EDSS score of 4-7) in England and Wales.
It is only an effective drug in about 1/3 of the people who qualify for it, the drug does make walking significantly easier but it does not affect just walking. For example it will help with balance, putting a set of laces into shoes.
Approval does not mean that it will be available through your local NHS but lets keep our fingers crossed. I suggest you pester your MS nurse
Good luck in trying to get it prescribed. Do let me know what success you have.
So a friend of mine just messaged me about this drug as it’s just been on across most news channels and according to the NHS England site most will be eligable, so I’m a wheelchair user with poor balance and would love a go, I’ve already left a message with my MS nurse,
Jean
My mother who is a primary progressive sufferer of Ms trialled this drug a year or two ago. It resulted in quite bad side effects which resulted in her ceasing the drug. I wondered now with the drug being made accessible nationally across England, and with the patent coming to an end - have any, or, will any further developments with the drug be made for people who struggled with the side effects. Additionally, for those people who were deemed as non-responders, will further developments be made with Fampradine to support them?
Hi @dangeorge2693 Well it’s good to read your reply, I did read it could cause side effects, but I wasn’t sure what, I really want this to be a game changer, but not if it’s going to cause me too many problems,
Jean
I’ve had MS just over 20 years and was diagnosed as Secondary Progressive a few years after then. As a result I haven’t been eligible for any treatments really for most of my diagnosis. Fampridine is something I’d really be interested in trying however, as per usual, the potential side effects sound very worrying ie seizures. How do other people come to the decision (or not) to go ahead with treatments even if they’re worried about what might happen as a result of taking them? My mobility and balance are really deteriorating however I don’t want to end up in a worse state than I already am!
This is from the patient information leaflet and might help with your risk assessment.
Like all medicines, this medicine can cause side effects, although not everybody gets them.
If you have a seizure, stop taking Fampyra and tell your doctor immediately.
If you experience one or more of the following allergic (hypersensitivity) symptoms: swollen face, mouth, lips, throat or tongue, reddening or itching of the skin, chest tightness and breathing problems stop taking Fampyra and see your doctor immediately.
Side effects are listed below by frequency:
Very common side effects
May affect more than 1 in 10 people:
Urinary tract infection
Common side effects
May affect up to 1 in 10 people:
Feeling unsteady
Dizziness
Spinning sensation (vertigo)
Headache
Feeling weak and tired
Difficulty sleeping
Anxiety
Minor shaking (tremor)
Numbness or tingling of skin
Sore throat
Common cold (nasopharyngitis)
Flu (influenza)
Viral infection
Difficulty breathing (shortness of breath)
Feeling sick (nausea)
Being sick (vomiting)
Constipation
Upset stomach
Back pain
Heartbeat that you can feel (palpitations)
Uncommon side effects
May affect up to 1 in 100 people
Fits (seizure)
Allergic reaction (hypersensitivity)
Severe allergy (anaphylactic reaction)
Swelling of the face, lips, mouth or tongue (angioedema)
New onset or worsening of nerve pain in the face (trigeminal neuralgia)
Hi @ Julietta, You are like me, I went straight in as SPMS and have had nothing, I too would like to try this and have read the info that @ whammel has sent, very interesting, I put a post on everyday living, you might want to look at some of the replies,
Jean