Going off treatment...?
Hi everyone, I am 50 and have had MS for almost 25 years. I have been on Tecfidera for ten years and my Neurologist noticed my white blood cell count taking a downward trend since I started it. He wants me to stop taking it for six months to see if there are any changes in my blood tests.
The thought of going off treatment is terrifying to me, when I asked him if my chances of relapsing are higher, he said he couldn't say and that it's different for everyone.
Has anyone experienced this issue and had to go off treatment? I haven't had a relapse while being on Tecfidera and I'm scared if I relapse it could be really bad and even cause permanent disability.
Can anyone relate or help calm my anxiety?
I relate with your feelings, I had been taking plegridy for 8yrs and had endured it's side effects every two weeks, and thought it was a price I had to pay to avoid further disabilities in the future. Having come off it 6mth ago, initially I was elated as I was no longer feeling really sick every two weeks, and I could plan and enjoy my time with my son and my wife, but I still live with MS and it still creeps back. Work colleagues asked if I was cured, as my mood lifted so much and I was over the moon about stopping the DMT, Probably quite confusing for them , the fear of relapse is what has driven me to take the Meds, but it was a long 8yrs and I feel a lot better now I'm off. It's still a lonely journey though.
I used to be on Tecfidera for almost 5 years and yes my white blood cells were low also, but I ended up having a major flare up and ended up switching to Ocrevus in 2020 and have been on it for the last 6 years, I’ll be 50 in 2 years after my birthday this July, I don’t plan on no getting off any treatment yet