Awaiting confirmation that i might have developed a peripheral neuropathy after being on Aubagio since 2018.
Just asking whether anyone else has experienced this…Many thanks
Hello Rachel
Welcome to the forum.
This is what the NHS says about peripheral neuropathy: Peripheral neuropathy - NHS
It says to me that peripheral neuropathy in MS is part of the ‘neuropathic pain’ spectrum. We, nearly all of us, suffer some degree of pain, even when it doesn’t exactly come across as ‘pain’. For example, pins and needles in our extremities are part of pain.
This is what the MS Trust has to say about neuropathic pain: Neuropathic pain - the 'invisible illness' | MS Trust
I’ve had pins and needles in my feet for many years and in my hands too, although they’re more numb than tingly most of the time. Sometimes, especially when they’re hot, it’s agony. I find Amitriptyline helps, but it’s a drug that can give you a ‘hangover’ type feeling if you take it too late at night.
Often the damage we suffer as a result of relapses is the cause of the pain we experience. I believe that sometimes, even when a person has relapsing remitting MS, nerve damage can be accruing over time even when we’re not actively relapsing.
Aubagio is probably the least effective of the disease modifying drugs (DMDs) available right now. We measure the effectiveness of DMDs by the average relapse severity and reduction rate. It also has an impressive number of potential side effects. One of these is actually nerve pain. So in addition to getting peripheral neuropathy from MS, your DMD could actually be adding to your pain.
You could consider asking your neurologist to switch DMDs. There are so many available right now that switching should be quite easy. You could talk to your MS nurse about changing drugs if you think that’s a good idea, or get in touch with your neurologist by phoning his/her secretary.
This is the link to the MS Trusts Decisions Aid. MS Decisions aid | MS Trust You can see from here that Aubagio is certainly one of, if not the, least effective drugs at preventing relapses.
I hope this information is helpful to you.
Sue
Hi Sue
Thank you for your response, your message was very much appreciated.
I am hoping to have a talk with my consultant in a couple of weeks (he is currently on annual leave) . He requested that I had some nerve conduction studies done, as he wanted to rule out the Aubagio causing the peripheral neuropathy. I had them done and the consultant who performed the test told me that they weren’t normal suggesting a peripheral neuropathy!!
I am sorry to hear that you experience neuropathic pain , it is awful isn’t it.
I am just concerned about the Aubagio causing this and I do feel I want to come off it.
Hopefully I will get some answers in a couple of weeks.
Take care
Rachel