Hi folks
I am writing for a friend who is unable to come on here at present, she has dreadful pain with her MS and was recently told by a Neuro that she should ask for the new oral drugs (Betaferon caused too many side effects and she was told that oral drugs may not).
Could anyone tell her whether taking oral drugs have helped with MS pain.
Thank you on behalf of my friend for any replies.
Wendy x
Hi Wendy.
Sorry your friend is suffering.
I am on Rebif, not on oral DMDs but the only thing that helps with my pain is Gabapentin.
Hope your friend gets some relief soon.
Shazzie xx
Hi Wendy,
“Oral drugs” covers a huge spectrum, so I’m assuming you mean oral DMDs in particular, if they are being suggested as an alternative to Betaferon.
A key thing to understand is that NONE of the DMDs - whether oral or the conventional injectables - are intended to treat symptoms such as pain. Their only job is to try to reduce or prevent future relapses, not to make the person feel better NOW. If your friend opts for the oral DMDs, it needs to be on the clear understanding that reducing future relapses IS a benefit, but treating symptoms is not the aim. It’s unreasonable to expect any DMD to work as a painkiller, because that’s not what they’re for.
If someone is relapsing very frequently, and it’s the relapses causing the pain, then yes, I suppose managing to prolong the intervals between relapses would enable a fuller recovery, and perhaps improve how the person feels. But that’s really more of a by-the-by, and still wouldn’t mean the DMD was functioning as a painkiller. DMDs don’t reverse damage that has already happened, and that’s why they’re not very effective at treating symptoms, which result from existing damage.
Having said that, there are many oral drugs (not DMDs) that ARE designed to treat symptoms, and there’s absolutely no reason a person can’t do both - DMDs to try to limit future disease activity, and other drugs to help things NOW - you don’t have to choose on or the other.
If pain is the main problem, your friend probably needs to discuss pain relief options, as well as a different DMD. The two are not really connected.
Hope this helps,
Tina
x
Thanks for the replies Tina and Shazzie
​
Wendy x
the oral dmd’s - aubagio, gilenya and tecfidera all have side effects.
your friend will need to speak to her neuro or ms nurse to see what she is eligible for.
the neuro or nurse will talk her through the side effects.
i recently chose tecfidera, mainly because the others would require me to have fortnightly blood tests at the hospital where my neuro is based.
tecfidera’s side effects are flushing and stomach problems.
i need to get stocked up on aspirin (for the flushing) and immodium for the stomach problems.
people who are already taking it say that the side effects are just in the first few weeks.
hope she can make her decision.
carole x
Thanks for the reply Carole, I suppose by virtue of preventing relapses it would also prevent some of the pain.
Wendy x