Forum

Ongoing symptoms

Hi everyone, when I sit reading posts especially about relapses I do get a bit confused. I have been taking Avonex for the last 18months as my last MRI showed numerous more lesions, I was dx 6 yrs ago. I definitely have had 3 relapses since being on the drug, but I have some symptoms all the times. Pins and needles, neuropathic pain and lots of burning sensations and fatigue is this the norm( if there is a norm) with r&r ms ?? X

From my experience, it’s pretty normal for a lot of MSers to have various symptoms all the time, but it’s definitely not the norm to have so many relapses when you’re on a DMD.

According to NICE guidelines, two relapses constitutes a failure of disease modifying treatment (many neuros believe that one does). From what you’ve said I would have thought that your neuro should have offered you a second-line treatment (e.g. Tysabri or fingolimod/Gilenya) instead - you meet the eligiblility criteria! The neuro may argue that Avonex is quite slow to reach full effect versus the other injectables (it can take up to a year), but if you’ve relapsed in the past six months, something is definitely not right and this argument just does not hold water.

If I were you I would be asking why your neuro hasn’t suggested a change in treatment. (Not all consultants can prescribe second-line drugs btw! If yours is one then please push for a referral to someone else.)

Good luck!

Karen x

I agree with what Karen says. I have been on Extavia for 4 years nd have frequent relapses ( about every 6 months). Most I haven’t reported as fairly mild sensory rather than affecting me hugely …except the fatigue that is. Last two have been worse so reported to MS nurse. She has referred me back to neuro to discuss Tysabri.