Recent scan showed inflammation and increase in lesions so have been advised to make change to Tysabri from Gilenya. Had felt unwell a while and been under a lot of stress so not surprised. Tested JC positive and got a high result but neurologist thinks this is the best bet for me. Have had ms 12/13 years now and just turned 30. Feel very nervous. Currenrly on steroids to reduce chance of Gilenya rebound and start on Tysabri in next few weeks. Would love to hear of anyones experiences - feeling a bit alone in all this at the moment. Nurses at the hospital haven’t been supportive or helpful, just delayed the process by 3 weeks. Currently having to sheild for 2 weeks due to the steroids- they haven’t been clear on that either so I’m following ms society nurse advice. Has anyone else made the switch off of Gilenya? How was it? Alterntively any experience with steroids? Never had them before and feeling a bit funny. Would be great to hear of anyone else’s experience. Also interested if anyone else is on Tysabri with a high JC positive… what does monitoring entail and how regular is it?
Would love to hear from anyone who can relate to a bit of any of this at all or might have some insight. Hard to explain how I feel at all at the moment. Overwhelmed and nervous…understatement!